Science.gov

Sample records for aggressive end-of-life care

  1. End of life care.

    PubMed

    Williams, Ruth

    2012-01-26

    The combination of an ageing population and increasing numbers of prisoners means delivering end of life care in prisons is inevitable. To this end the National End of Life Programme has published a practical guide, aimed at health and social care workers, and prison staff. The guide outlines the six steps of the end of life care pathway in detail, from initiating discussions to care after death. It also includes case studies highlighting best practice. To read the guide, visit http://tinyurl.com/ndoflifeinprison.

  2. End of Life (Hospice Care)

    MedlinePlus

    Healthy Lifestyle End of life Hospice care might be an option if you or a loved one has ... 28, 2016 Original article: http://www.mayoclinic.org/healthy-lifestyle/end-of-life/in-depth/hospice-care/art- ...

  3. End of Life Care

    MedlinePlus

    ... this with your healthcare provider. End of Life Considerations There are situations that ill older adults may ... is not indicated. In some settings, however, the law may require that physicians offer the option of ...

  4. End-of-Life Conversations and Hospice Placement: Association with Less Aggressive Care Desired in the Nursing Home.

    PubMed

    Reinhardt, Joann P; Downes, Deirdre; Cimarolli, Verena; Bomba, Patricia

    2017-01-01

    Education about end-of-life care and treatment options, communication between family and health care providers, and having advance directives and medical orders in place are important for older adults with chronic, progressive decline and end-stage disease who spend their last days in the nursing home. This study used retrospective data (6 months before death) of long-stay nursing home decedents (N = 300) taken from electronic health records to capture the end-of-life experience. Findings showed for almost all decedents, Do Not Resuscitate and Do Not Intubate orders were in place, and just over one-half had Do Not Hospitalize and No Artificial Feeding orders in place. A small proportion had No Artificial Hydration or No Antibiotic orders in place. Overall, there was congruence between documented medical orders and treatment received. Findings showed that use of hospice and discussions about particular life-sustaining treatments each had significant associations with having less aggressive medical orders in place. These results can inform best practice development to promote high quality, person-directed, end-of-life care for nursing home residents.

  5. End-of-life care in Canada.

    PubMed

    Fowler, Robert; Hammer, Michael

    2013-06-01

    End-of-life care and planning is critically important to the next decades of health care in Canada. In our country, between 2005 and 2036, the number of seniors 65 years and older is projected to increase by up to 25%, and the number of deaths by 65%. The majority of patients are currently admitted to hospital and intensive care units at the end of life; however, up to 70% of elderly patients say they would prefer a less aggressive treatment plan focusing on providing comfort rather than a technologically supported, institutionalized death. Herein we provide a brief overview of the end-of-life care in the Canadian context, and highlight challenges and opportunities for health care system change in the coming decades.

  6. End-of-life care: practical tips.

    PubMed

    Marthaler, Maureen T

    2005-01-01

    End-of-life care is one part of nursing that many nurses are not fond of administering. The procedure for administering end-of-life care and the rationales for providing such care can benefit the nurse, patient, and family. Considering religious beliefs and practices can assist in proper care for the patient.

  7. Palliative and end of life care for people with dementia.

    PubMed

    Harrison Dening, Karen

    2016-02-03

    Dementia is a life-limiting condition that is largely a disease of ageing. However, older people in general, and older people with dementia in particular, have not always had equal access to effective palliative and end of life care. As a result, people with dementia at the end of life often receive aggressive and burdensome interventions, or inadequate assessment and management of their symptoms. Patterns in how people with dementia experience and present symptoms as they near the end of life can indicate when the goals of care should change and a palliative approach should be adopted.

  8. Enhance End-of-Life Care

    MedlinePlus

    ... the lead at NIH in end-of-life care research. NINR funds studies aimed at improving the care of the dying, as well as communication among ... Ideally, all health care planning should include palliative care at the time of ... Nursing Research Studies , from which these capsule research stories were taken, ...

  9. Spiritual care at the end of life.

    PubMed

    Storey, P

    2001-08-01

    An essential part of end-of-life medical care, spiritual care allows physicians to recognize problems like meaninglessness, anguish, and hopelessness, for which effective interventions are available. This form of care can be a deeply rewarding area of medical practice.

  10. Gaps in end-of-life care.

    PubMed

    Daher, Michel

    2011-01-01

    End-of-life care is an important aspect of medical practice. Individual physicians and the medical community must be committed to the compassionate and competent provision of care to dying patients and their families. Patients rightfully expect their physicians to care for them and provide them with medical assistance as they are dying. To care properly for patients near the end of life, the physician must understand that palliative care entails addressing physical, psychosocial, and spiritual needs and that patients may at times require palliative treatment in an acute care context. To provide palliative care, the physician must be up to date on the proper use of opioids and the legality and propriety of using high doses of opioids as necessary to relieve suffering. Good symptom control; ongoing involvement with the patient; and physical, psychological, and spiritual support are the hallmarks of quality end-of-life care. Care of patients near the end of life, however, has a moral, psychological, and interpersonal intensity that distinguishes it from most other clinical encounters. With appropriate education, physicians can play a key role to improve care for patients and families who are living with advanced life-threatening illness. Although some issues (e.g., the role of physician-assisted death in addressing suffering) remain very controversial, there is much common ground based on the application of the four major principles of medical ethics, nonmaleficence, beneficence, autonomy, and justice.

  11. Spiritual care at the end of life.

    PubMed

    Wynne, Lianne

    With increasing focus on providing spiritual care at the end of life, healthcare professionals and those involved in policy development are questioning how to make a 'good' death the expectation, rather than the exception. However, there is a lack of awareness of the importance of spirituality to patients' lives, and how good spiritual care can enhance quality of life and improve patient outcomes. This article examines the role of spirituality in palliative care, focusing on spiritual assessment, communication and compassion in nursing. The article attempts to provide a working definition of spirituality, focusing on who should provide spiritual care and the difficulties in meeting the spiritual needs of individuals at the end of life. Strategies to promote the spiritual wellbeing of the patient are discussed.

  12. Video Eases End-of-Life Care Discussions

    Cancer.gov

    Patients with advanced cancer who watched a video that depicts options for end-of-life care were more certain of their end-of-life decision making than patients who only listened to a verbal narrative.

  13. Communication in palliative care: talking about the end of life, before the end of life.

    PubMed

    Brighton, Lisa Jane; Bristowe, Katherine

    2016-08-01

    Increasing evidence demonstrates the benefits of early end-of-life care discussions with patients with life-threatening illness and their families. However, these conversations often do not occur. This review explores some of the many barriers faced by clinicians in relation to end-of-life care discussions, including prognostic uncertainty, fear of causing distress, navigating patient readiness and feeling unprepared for these conversations. The value of core clinical communication skills, potential strategies for improvement and areas for future research are also discussed. It is essential that clinicians offer patients facing life-threatening illness, and those close to them, the opportunity to discuss end-of-life issues in line with their information and decision-making preferences. With a growing and ageing global population, supporting both generalist and specialist providers of palliative care in this task is key. With careful preparation, fears of undertaking these discussions should not be a barrier to initiating them.

  14. Caring at the End of Life

    ERIC Educational Resources Information Center

    Olson, Sandy

    2008-01-01

    Dying and death have become more and more complicated for everyone. Technology and the patient autonomy movement have come together to create a host of possible end of life treatment dilemmas. The introduction of advance directives in medical decision-making has raised further issues about projecting treatment wishes into future, unknowable…

  15. Internists' attitudes towards terminal sedation in end of life care

    PubMed Central

    Kaldjian, L; Jekel, J; Bernene, J; Rosenthal, G; Vaughan-Sarrazin, M; Duffy, T

    2004-01-01

    Objective: To describe the frequency of support for terminal sedation among internists, determine whether support for terminal sedation is accompanied by support for physician assisted suicide (PAS), and explore characteristics of internists who support terminal sedation but not assisted suicide. Design: A statewide, anonymous postal survey. Setting: Connecticut, USA. Participants: 677 Connecticut members of the American College of Physicians. Measurements: Attitudes toward terminal sedation and assisted suicide; experience providing primary care to terminally ill patients; demographic and religious characteristics. Results: 78% of respondents believed that if a terminally ill patient has intractable pain despite aggressive analgesia, it is ethically appropriate to provide terminal sedation (diminish consciousness to halt the experience of pain). Of those who favoured terminal sedation, 38% also agreed that PAS is ethically appropriate in some circumstances. Along a three point spectrum of aggressiveness in end of life care, the plurality of respondents (47%) were in the middle, agreeing with terminal sedation but not with PAS. Compared with respondents who were less aggressive or more aggressive, physicians in this middle group were more likely to report having more experience providing primary care to terminally ill patients (p = 0.02) and attending religious services more frequently (p<0.001). Conclusions: Support for terminal sedation was widespread in this population of physicians, and most who agreed with terminal sedation did not support PAS. Most internists who support aggressive palliation appear likely to draw an ethical line between terminal sedation and assisted suicide. PMID:15467087

  16. Concepts and debates in end-of-life care.

    PubMed

    Chakravarty, Abhijit; Kapoor, Pawan

    2012-01-01

    Debates in India on end-of-life care assumed a new life after the petition in the Supreme Court in the case of Aruna Ramchandra Shanbaug, calling for withdrawal of life-sustaining therapy from a patient in a persistent vegetative state. The Court's landmark decision has led the way for discussing and developing guidelines on various situations in end-of- life care. This paper discusses some key concepts in end-of-life care - medical futility, palliative care, advance directives, surrogate decision making, physician assisted suicide and euthanasia - with reference to the guidelines of various medical associations and decisions in Indian courts.

  17. Developing, implementing and evaluating an end of life care intervention.

    PubMed

    Cox, Anna; Arber, Anne; Bailey, Fiona; Dargan, Sue; Gannon, Craig; Lisk, Radcliffe; Quinn, Barry; Samarasinghe, Jane; Wrigley, Martha; Gallagher, Ann

    2017-01-31

    Aim To develop, implement and evaluate a collaborative intervention in care homes seeking to increase the confidence and competence of staff in end of life care and enable more people to receive end of life care in their usual place of residence. Method A two-phase exploratory mixed methods design was used, evaluating the effect of an end of life care toolkit and associated training in care homes, facilitated by a specialist palliative care team. Six care homes in England were recruited to the intervention; 24 staff participated in discussion groups; 54 staff attended at least one training session; and pre- and post-intervention questionnaires were completed by 78 and 103 staff respectively. Results Staff confidence in receiving emotional and clinical support and managing end of life care symptoms increased post-intervention, but confidence in discussing death and dying with residents and relatives decreased. Audit data indicate greater reduction in the number of residents from participating care homes dying in hospital than those from comparison homes. Conclusion Collaborative end of life care interventions support care home staff to manage end of life and may enable residents to have choice about their place of death.

  18. Care management role in end-of-life discussions.

    PubMed

    Meyer, Star

    2012-01-01

    How do we prepare our patients for decisions that will need to be made for end-of-life care? End-of-life care discussions should occur early on in the patient's disease process and often requires a great deal of coordination between multiple caregivers. There are also ethical, cultural social and spiritual considerations during this very important time in the disease process. Research suggests that we are not doing an adequate job of addressing end-of-life care with our patients and that a great deal of money and resources are being spent in the last days of life when there may be no clinical indication to do so. Registered nurse case managers have a unique knowledge base to serve in the role of coordinating care and leading the multidisciplinary care team in an effort to use resources responsibly while providing patients and families with options for end-of-life care.

  19. Interdisciplinary education on discussing end-of-life care.

    PubMed

    Rose, Chrissian; Bonn, Ashley; MacDonald, Kaitlyn; Avila, Secia

    2012-01-01

    The interactions and observations of residents speaking with patients and family members about end-of-life decisions indicated a need for more empathy. Nursing and medical students have been called to learn and work together so they can work more effectively. A review of the evidence on interdisciplinary education of residents concerning end-of-life care and communicating with patients and their family members was the inspiration for this study. This article applies evidence related to interdisciplinary education in critical care settings. This pilot project was a collaboration of medical education between a critical care service in a public hospital and baccalaureate nursing students assisting family members in making end-of-life decisions. As nursing students, we were able to effectively present content on end-of-life decision making to medical residents.

  20. Quality end-of-Life cancer care: An overdue imperative.

    PubMed

    Faguet, Guy B

    2016-12-01

    This review assesses the current status of end-of-life care based on large-scale, multiyear nationwide surveys of treatment modality, setting, and cost of care during terminal patients' last months of life. It shows that end-of-life care goals often remain suboptimal. Contributing factors include prioritized life preservation, uneven commitment to palliative care, few palliative care specialists, and perverse financial incentives that encourage costly interventions. Although not determinant per se, these factors coupled to doubts about what constitutes end-of-life can lead to overextended disease treatment and a late implementation of palliative care. In order to bridge the existing gap between care received and care expected and achieve quality end-of-life and promote death with dignity, we propose both to view the person rather than the disease as the unit of care and a pragmatic definition of end-of-life. Such a strategy should facilitate selecting an optimal time to transition from disease-targeted treatment to palliative care.

  1. Theodicy and End-of-Life Care

    PubMed Central

    Swinton, John; Abbas, Syed Qamar

    2013-01-01

    This article examines theodicy—the vindication of God's goodness and justice in the face of the existence of evil from the perspectives of Judaism, Christianity, and Islam. We focus on the thought processes that chaplains, social workers, and other professionals may use in their care interventions to address issues of theodicy for patients. Theodical issues may cause anxiety and distress for believers, but they can also potentially be a source of relief and release. Palliative care patients with a religious worldview often struggle with whether God cares about, or has sent, their pain. How social workers and other clinicians respond to such questions will have a great impact on how patients express themselves and use their religious beliefs to cope with their situations. For patients holding religious/spiritual perspectives, discussion of theodicy may facilitate closer relationships between patients and their caregivers and result in more compassionate and empathic care. PMID:23777234

  2. Ethical care at the end of life

    PubMed Central

    Latimer, E J

    1998-01-01

    In treating dying patients, who by virtue of their physical and emotional situation are frail and vulnerable, physicians must meet a high standard of professional, ethical care. Such a standard is based upon a philosophy of care that recognizes the patients' inherent worth as human beings and their uniqueness as individuals. The ethical and virtuous physician will practice in accordance with the principles of biomedical ethics that form the foundations of thought and treatment approaches in this area and will seek to do the best for the patient and the family. "Doing the best" includes respecting autonomy through gentle truth-telling, helping the patient and family to set treatment goals, and providing for symptom control, continuing attentive care and accompaniment throughout the course of the illness. Total care includes physical, emotional and spiritual aspects, is sensitive to cultural values and is best provided by an interdisciplinary team. Practices of symptom control in routine care and in crisis situations, as well as the cessation and non-initiation of treatment, will have as their goals the relief and comfort of the patient. The ethical physician will not act with the intention of bringing about the death of the patient, whether by ordering medication in excess of that required for symptom control, administering a lethal injection or any other means. PMID:9676552

  3. Symptom Management and End of Life Care

    PubMed Central

    Rudnicki, Stacy; McVey, April L.; Jackson, Carlayne E.; Dimachkie, Mazen M.; Barohn, Richard J.

    2016-01-01

    Synopsis The number of available symptomatic treatments has markedly enhanced the care of patients with Amyotrophic Lateral Sclerosis (ALS). Once thought to be “untreatable”, patients with ALS today clearly benefit from multidisciplinary care. The impact of such care on the disease course, including rate of progression and mortality, has surpassed the treatment effects commonly sought in clinical drug trials. Unfortunately, there are few randomized controlled trials of medications or interventions addressing symptom management which has resulted in the need for physicians to base their selection of specific therapies upon personal experience and anecdotal reports (1 Forshew). In this review, we will provide the level of evidence, when available, for each intervention that is currently considered “standard of care” by consensus opinion. PMID:26515628

  4. End-of-life care in a psychiatric hospital

    PubMed Central

    Waterman, Lauren Z.; Denton, David; Minton, Ollie

    2016-01-01

    Since the Liverpool Care Pathway has been withdrawn in the UK, clinicians supporting the palliative needs of patients have faced further challenges, particularly for patients with dementia who are unable to go to a hospice owing to challenging behaviours. It is becoming more important for different services to provide long-term palliative care for patients with dementia. Mental health trusts should construct end-of-life care policies and train staff members accordingly. Through collaborative working, dying patients may be kept where they are best suited. We present the case study of a patient who received end-of-life care at a psychiatric hospital in the UK. We aim to demonstrate how effective end-of-life care might be provided in a psychiatric hospital, in accordance with recent new palliative care guidelines, and highlight potential barriers. PMID:27280036

  5. Strengthening Nursing Education To Improve End-of-life Care.

    ERIC Educational Resources Information Center

    Ferrell, Betty R.; Virani, Rose; Grant, Marcia

    1999-01-01

    As the members of the health care team who spend the most time with patients who are facing death, nurses are aware of the need for improved end-of-life (EOL) care and have identified resources to achieve that goal by improving education. A survey of 725 nursing faculty and state boards indicates an awareness of the need for improved EOL care and…

  6. Approach to optimal care at end of life.

    PubMed

    Nichols, K J

    2001-10-01

    At no other time in any patient's life is the team approach to care more important than at the end of life. The demands and challenges of end-of-life care (ELC) tax all physicians at some point. There is no other profession that is charged with this ultimate responsibility. No discipline in medicine is immune to the issues of end-of-life care except perhaps, ironically, pathology. This presentation addresses the issues, options, and challenges of providing optimal care at the end of life. It looks at the principles of ELC, barriers to good ELC, and what patients and families expect from ELC. Barriers to ELC include financial restrictions, inadequate care-givers, community support, legal issues, legislative issues, training needs, coordination of care, hospice care, and transitions for the patients and families. The legal aspects of physician-assisted suicide is presented as well as the approach of the American Osteopathic Association to ensure better education for physicians in the principles of ELC.

  7. End-of-life care in medical textbooks.

    PubMed

    Carron, A T; Lynn, J; Keaney, P

    1999-01-05

    Improvement in end-of-life care has become a demand of the public and a priority for health care professionals. Medical textbooks could support this improvement by functioning as educational resources and as reference material. In this paper, four widely used general medical textbooks are assessed for their coverage of nine content domains for 12 illnesses that often cause death; each domain in each disease and in each text was graded for presence and helpfulness of advice. Helpful information was rare, and only prognostication and medical treatments to alter the course of the disease were usually mentioned. Harrison's Textbook of Medicine, The Merck Manual, and Scientific American Medicine often mentioned at least a few of the domains in each disease, although not often in a way that would guide a clinician. Manual of Medical Therapeutics (The Washington Manual) includes little information about end-of-life care. Improvement seems possible. Short additions of information on end-of-life care would probably be effective. Many chapters discussed at length certain topics that are clearly optional; other textbooks addressed these topics only briefly. When dealing with end-of-life care, physicians should seek guidance from other sources and textbook authors and editors should improve the utility and completeness of their texts.

  8. The Nurse Advocate in End-of-Life Care

    PubMed Central

    Hebert, Kathy; Moore, Harold; Rooney, Joan

    2011-01-01

    End-of-life nursing encompasses many aspects of care: pain and symptom management, culturally sensitive practices, assisting patients and their families through the death and dying process, and ethical decisionmaking. Advocacy has been identified as a key core competency for the professional nurse, yet the literature reveals relevant barriers to acquiring this skill. Challenges exist, such as limitations in nursing school curricula on the death and dying process, particularly in multicultural settings; differing policies and practices in healthcare systems; and various interpretations of end-of-life legal language. Patricia Benner's conceptual model of advocacy behaviors in end-of-life nursing provides the framework in which nurses can become effective patient advocates. Developing active listening and effective communication skills can enhance the nurse-patient trust relationship and create a healing environment. PMID:22190882

  9. Does Death Anxiety Affect End-of-Life Care Discussions?

    PubMed Central

    Brown, Alaina J.; Shen, Megan J.; Ramondetta, Lois M.; Bodurka, Diane C.; Giuntoli, Robert L.; Diaz-Montes, Teresa

    2017-01-01

    Objectives The aim of this study was to determine if a gynecologic cancer patient's comfort level discussing end-of-life care issues with her caregivers is related to her death anxiety level. Materials/Methods Gynecologic oncology clinic patients were asked to rate their degree of agreeability with 4 statements regarding comfort level discussing end-of-life care issues. Participants also completed the Hoge's Intrinsic Religiosity Scale and Templer's Death Anxiety Scale. Results Four hundred one surveys were distributed. One hundred twenty-nine patients participated, with a response rate of 32.2%. The median age of the sample was 55 years. Most patients were white (72.9%), married (58.9%), and Christian (85.3%). Most patients had ovarian cancer (40.4%). Of the 74 patients who knew their cancer stage, 59% had been diagnosed with advanced (stage III-IV) disease. Thirty-three percent were currently in remission, and 17% had recurrent disease. Of all patients surveyed, 32.6% were currently receiving treatment. Chemotherapy was the most common treatment (62% of those being treated). Higher level of comfort discussing end-of-life care topics such as do-not-resuscitate orders with family members was significantly associated with decreased death anxiety (P = 0.008 and P = 0.001). There was no significant association between comfort level when patients discussed do-not-resuscitate orders with physicians and patients' death anxiety (P = 0.14). After controlling for age, race, marital status, education level, current treatment status, and religiosity, linear regression analysis demonstrated that the relationship between a patient's increased comfort level when discussing end-of-life care topics with family members and decreased death anxiety remained statistically significant (P = 0.005 and P = 0.001). Conclusions Conversations regarding goals of treatment are an important component of caring for cancer patients. Death anxiety may contribute to decreased communication between

  10. Measuring End-of-Life Care Processes in Nursing Homes

    ERIC Educational Resources Information Center

    Temkin-Greener, Helena; Zheng, Nan; Norton, Sally A.; Quill, Timothy; Ladwig, Susan; Veazie, Peter

    2009-01-01

    Purpose: The objectives of this study were to develop measures of end-of-life (EOL) care processes in nursing homes and to validate the instrument for measuring them. Design and Methods: A survey of directors of nursing was conducted in 608 eligible nursing homes in New York State. Responses were obtained from 313 (51.5% response rate) facilities.…

  11. End-of-Life Care: An Overview for Professional Counselors

    ERIC Educational Resources Information Center

    Werth, James L.; Crow, Laura

    2009-01-01

    Although "End-of-Life Care for Terminally Ill Clients" is a section of the "ACA Code of Ethics" (American Counseling Association, 2005), neither the "Code" nor the counseling literature provides much direction for counselors who work with clients who are dying and with the clients' loved ones. The authors provide counselors with an overview of the…

  12. Excellent end of life care requires time and resources.

    PubMed

    2017-02-22

    Delivering excellent end of life care is among the biggest challenges faced by nurses today, regardless of their level of experience or place of work. Just about every nurse will be confronted with a dying patient at some stage, so it is essential they have the training and resources to cope.

  13. Acculturation of Attitudes Toward End-of-life Care

    PubMed Central

    Matsumura, Shinji; Bito, Seiji; Liu, Honghu; Kahn, Katharine; Fukuhara, Shunichi; Kagawa-Singer, Marjorie; Wenger, Neil

    2002-01-01

    OBJECTIVE Cross-cultural ethical conflicts are common. However, little is known about how and to what extent acculturation changes attitudes toward end-of-life care and advance care planning. We compared attitudes toward end-of-life care among Japanese Americans and Japanese in Japan. DESIGN Self-administered questionnaire in English and Japanese. SETTING AND PARTICIPANTS Community-based samples of Japanese Americans in Los Angeles and Japanese in Nagoya, Japan: 539 English-speaking Japanese Americans (EJA), 340 Japanese-speaking Japanese Americans (JJA), and 304 Japanese living in Japan (JJ). MEASUREMENTS AND MAIN RESULTS Few subjects (6% to 11%) had discussed end-of-life issues with physicians, while many (EJA, 40%; JJA, 55%; JJ, 54%) desired to do so. Most preferred group surrogate decision making (EJA, 75%; JJA, 57%; JJ, 69%). After adjustment for demographics and health status, desire for informing the patient of a terminal prognosis using words increased significantly with acculturation (EJA, odds ratio [OR] 8.85; 95% confidence interval, [95% CI] 5.4 to 14.3; JJA, OR 2.8; 95% CI 1.8 to 4.4; JJ, OR 1.0). EJA had more-positive attitudes toward forgoing care, advance care planning, and autonomous decision making. CONCLUSION Preference for disclosure, willingness to forgo care, and views of advance care planning shift toward western values as Japanese Americans acculturate. However, the desire for group decision making is preserved. Recognition of the variability and acculturation gradient of end-of-life attitudes among Japanese Americans may facilitate decision making and minimize conflicts. Group decision making should be an option for Japanese Americans. PMID:12133143

  14. Reflections on Hope and Its Implications for End-of-Life Care.

    PubMed

    Mattes, Malcolm D; Sloane, Michelle A

    2015-05-01

    Physicians caring for individuals with life-altering, incurable illnesses often have a desire to convey a sense of hope while also helping their patients prepare for the end of life to minimize unnecessary suffering and grief. Unfortunately, in the United States, most people receive more-aggressive treatments toward the end of life than studies would suggest that they desire. This reflects the challenging task of balancing optimism and realism, and how providing a false sense of hope for a cure for too long a time while avoiding advance care planning may contribute significantly to the problem. This article explores the interplay of hope and advance care planning, and suggests a need for excellent individualized communication in the setting of advanced cancer to improve end-of-life care.

  15. End-of Life Care and Barriers for Female Inmates

    PubMed Central

    Loeb, Susan J.; Penrod, Janice; Hollenbeak, Christopher S.; Smith, Carol A.

    2011-01-01

    The number of female inmates is growing, and their average age is increasing. As a result, end-of-life care is situated in a highly restrictive environment with a focus on security rather than comfort. We describe the need for and potential barriers to humane care and provide care strategies that can be useful in a complex organizational system. Frontline workers such as nurses who understand the balance between care and control must promote change in the women’s prison system. PMID:21645114

  16. Pediatric End-of-Life Issues and Palliative Care

    PubMed Central

    Michelson, Kelly Nicole; Steinhorn, David M.

    2007-01-01

    Optimizing the quality of medical care at the end of life has achieved national status as an important health care goal. Palliative care, a comprehensive approach to treating the physical, psychosocial and spiritual needs of patients and their families facing life-limiting illnesses, requires the coordinated efforts of a multidisciplinary group of caregivers. Understanding the basic principles of palliative care can aid emergency department staff in identifying patients who could benefit from palliative care services and in managing the challenging situations that arise when such patients present to the hospital for care. In this article we present the overall philosophy of pediatric palliative care, describe key elements of quality palliative care, and identify additional referral sources readers can access for more information. PMID:18438449

  17. [Spiritual end of life domiciliary care: a bibliographic review].

    PubMed

    Sierra García, Marta; Getino Canseco, María

    2013-09-01

    This article is a descriptive literature review on the topic of spirituality, in a palliative care aimed at adult patients with different pathologies that are in an advanced stage of the disease. We analyze the sociocultural construction of spirituality at the end of life in the domiciliary environment, relating it to the disease process, its terminality and death. We describe the attention of the palliative-nurses, caring for the spiritual needs from a holistic point of view. It has to be considered that if the palliative-nurses are aware of the spirituality of patients with terminal illness should have some established strategies in their efforts to provide spiritual comfort.

  18. 'Long way to go' for high quality end of life care.

    PubMed

    Kendall-Raynor, Petra

    2017-03-31

    NHS England recently called on its Twitter followers to share their views about end of life care. It highlighted best practice examples in a bid to show progress on the government's six commitments to end of life care.

  19. Narrative Medicine and Contemplative Care at the End of Life.

    PubMed

    Lewis, Bradley

    2016-02-01

    Two important movements leading the way toward a new approach to healthcare are narrative medicine and contemplative care. Despite considerable common ground between these two movements, they have existed largely parallel to each other, with different literatures, different histories, different sub-communities, and different practitioners. This article works toward integration of narrative medicine and contemplative care through a philosophical exploration of key similarities and differences between them. I start with an overview of their similar diagnosis of healthcare's problems and then consider their related, but different, responses to these problems. Finally, I use the example of Margaret Edson's Pulitzer Prize winning drama W;t to highlight how these issues can play out at the end of life.

  20. End-of-life care in patients with advanced lung cancer.

    PubMed

    Lim, Richard B L

    2016-10-01

    Despite advances in the detection, pathological diagnosis and therapeutics of lung cancer, many patients still develop advanced, incurable and progressively fatal disease. As physicians, the duties to cure sometimes, relieve often and comfort always should be a constant reminder to us of the needs that must be met when caring for a patient with lung cancer. Four key areas of end-of-life care in advanced lung cancer begin with first recognizing 'when a patient is approaching the end of life'. The clinician should be able to recognize when the focus of care needs to shift from an aggressive life-sustaining approach to an approach that helps prepare and support a patient and family members through a period of progressive, inevitable decline. Once the needs are recognized, the second key area is appropriate communication, where the clinician should assist patients and family members in understanding where they are in the disease trajectory and what to expect. This involves developing rapport, breaking bad news, managing expectations and navigating care plans. Subsequently, the third key area is symptom management that focuses on the goals to first and foremost provide comfort and dignity. Symptoms that are common towards the end of life in lung cancer include pain, dyspnoea, delirium and respiratory secretions. Such symptoms need to be anticipated and addressed promptly with appropriate medications and explanations to the patient and family. Lastly, in order for physicians to provide quality end-of-life care, it is necessary to understand the ethical principles applied to end-of-life-care interventions. Misconceptions about euthanasia versus withholding or withdrawing life-sustaining treatments may lead to physician distress and inappropriate decision making.

  1. 2016 AAHA/IAAHPC End-of-Life Care Guidelines.

    PubMed

    Bishop, Gail; Cooney, Kathleen; Cox, Shea; Downing, Robin; Mitchener, Kathy; Shanan, Amir; Soares, Nancy; Stevens, Brenda; Wynn, Tammy

    End-of-life (EOL) care and decisionmaking embody the critical final stage in a pet's life and are as important and meaningful as the sum of the clinical care provided for all prior life stages. EOL care should focus on maximizing patient comfort and minimizing suffering while providing a collaborative and supportive partnership with the caregiver client. Timely, empathetic, and nonjudgmental communication is the hallmark of effective client support. Veterinarians should not allow an EOL patient to succumb to a natural death without considering the option of euthanasia and ensuring that other measures to alleviate discomfort and distress are in place. Animal hospice care addresses the patient's unique emotional and social needs as well as the physical needs traditionally treated in clinical practice. An EOL treatment plan should consist of client education; evaluating the caregiver's needs and goals for the pet; and a collaborative, personalized, written treatment plan involving the clinical staff and client. Primary care practices should have a dedicated team to implement palliative and hospice care for EOL patients. How the healthcare team responds to a client's grief after the loss of a pet can be a key factor in the client's continued loyalty to the practice. Referral to professional grief-support counseling can be a helpful option in this regard.

  2. End-of-life care in the neonatal intensive care unit: applying comfort theory.

    PubMed

    Marchuk, Allison

    2016-07-02

    The provision of quality end-of-life care is essential when a neonate is dying. End-of-life care delivered in a neonatal intensive care unit (NICU) must consider the needs of both the newborn and their family. The purpose of this paper is to demonstrate how comfort theory and its associated taxonomic structure can be used as a conceptual framework for nurses and midwives providing end-of-life care to neonates and their families. Comfort theory and its taxonomic structure are presented and issues related to end-of-life care in the NICU are highlighted. A case study is used to illustrate the application of comfort theory and issues related to implementation are discussed. The delivery of end-of-life care in the NICU can be improved through the application of comfort.

  3. End-of-Life Care Policies in Flemish Residential Care Facilities Accommodating Persons with Intellectual Disabilities

    ERIC Educational Resources Information Center

    D'Haene, I.; Pasman, H. R. W.; Deliens, L.; Bilsen, J.; Mortier, F.; Stichele, R. Vander

    2010-01-01

    Objective: This article aims to describe the presence, content and implementation strategies of written policies on end-of-life decisions in Flemish residential care facilities (RCFs) accommodating persons with intellectual disabilities (ID), and to describe training, education and quality assessments of end-of-life care. Methods: A…

  4. End of life care in hematology: still a challenging concern.

    PubMed

    Niscola, Pasquale; Tendas, Andrea; Scaramucci, Laura; Giovannini, Marco

    2014-01-01

    The majority of patients with hematological malignancies (HM) may experience troublesome symptoms and complicating clinical syndromes throughout all phases of disease. Therefore, among the current concepts concerning the comprehensive management of hematological patients, palliative care should exert a more ever expanding role, in particular in the advanced phases of disease, as there are special clinical needs (such as blood transfusions and anti-infective treatments), presented by this peculiar category of cancer patients. However, reported experiences on advanced HM patients claimed a too intensive level of medical care during the last week of life for which the needs of future and collaborative researches in order to set a proper allocation of medical resources and the optimal end-of-life care in the hematologic setting are highly awaited. Indeed, the most important aspect of caring for these suffering patients is to ameliorate or restore their quality of life (QoL) though a highly humanized approach, whereas technological and pharmacological measures should be limited enough to control the symptoms burden and the several kinds of sufferance that may complicate the final phase of disease course.

  5. [End of life care for patients with ALS in Japan].

    PubMed

    Ogino, Mieko

    2008-11-01

    Because the whole of the management of ALS is palliative care, in this paper I presented about the management of each symptom, respiratory care, decision making of the mechanical ventilation, and the end of life care in Japan. We must be aware that the patients with ALS can continue to live if they decide to wear the tracheostomy ventilation (TV) even just before death, it is completely different form situation in cancer patients. In Japan about 20% of ALS patients choose TV, this figure is much higher than western countries. On the other hand, only 14% of neurologist have experience of opioids usage for ALS in 2007, much lower than western countries. We started to use opioids for ALS patients in 2005. We use morphine 10-30 mg/day as maintenance dose in early phase without sever side effect. Eighty-eight percent patients reported relief of breathlessness, in 4 patients out of 9, PCO2 was decreased. It is big problem that the health insurance does not cover the cost of opioids for ALS. I want to emphasize that the best effort should be taken to relieve suffering not only for cancer patient but for every patient.

  6. [Palliative care - difficult decisions at the end of life].

    PubMed

    Kunz, Roland

    2009-08-01

    Palliative care comprises the complete treatment and care of patients suffering from incurable, life-threatening or chronically progressive disease. The aim is to provide the patients with the best possible quality of life and support them through the course of their illness until their death, to alleviate their suffering as much as possible and in consideration of the social, spiritual and religious aspects according to the patient's wishes. Palliative care is most important when the dying process and the patient's impending death do seem to be inevitable. Shared decision-making at an early stage of illness is mandatory. Respect for a person's dignity means focusing on their autonomy, their personal preferences and their right to live according to their own values and convictions. A person's autonomy is based on the level of information that he or she is given, the pertinent situation, and the patient's readiness and ability to take responsibility for their own life and end-of-life decisions. Decisions about life-prolonging measures, treatment of pain, dyspnea and palliative sedation require balancing the burden against the benefits. Decision-making must rest with the patient - as far as possible and as long as possible. The potential life-shortening effect of palliative therapy will need to be considered and discussed.

  7. The nurse practitioner and policy in end-of-life care.

    PubMed

    DuBois, Janet C; Reed, Pamela G

    2014-01-01

    The focus of this column is the interface between policy and end-of-life care, particularly as provided by advanced nurse practitioners. The complexities of end-of-life along with barriers in practice can diminish quality of life for patients and their families. Changes in policy are needed to enable nurse practitioners their full scope of practice in a way that benefits patients and families at end-of-life. Three areas particularly relevant to policy for nursing practitioners and end-of-life care are addressed: scope of practice, reimbursement, and prescribing practices. Other recommendations for policy and end-of-life care are discussed.

  8. Advance Care Planning: is quality end of life care really that simple?

    PubMed

    Johnson, Stephanie; Kerridge, Ian; Butow, Phyllis N; Tattersall, Martin H N

    2017-04-01

    The routine implementation of Advance Care Planning (ACP) is now a prominent feature of policy directed at improving end of life care in Australia. However, while complex ACP interventions may modestly reduce medical care at the end of life and enable more people to die at home or outside of acute hospital settings, existing legal, organisational, cultural and conceptual barriers limit the implementation and utility of ACP. We suggest that meaningful improvements in end of life care will not result from the institutionalisation of ACP but from more significant changes to the design and delivery of care.

  9. [Advance directives for end-of-life care].

    PubMed

    Golan, Ofra G

    2009-04-01

    The provision of care for the dying patient confronts the caring team with very complex ethical dilemmas that doctors have no "medical" means to manage. Such decisions should be made according to the patient's will and preferences reflecting the value of life and the quality of life. However, many patients are not competent at this stage to decide or to express their wishes. Therefore, the Dying Patient Law of 2005, recognized advance expression of will through advance directives and power of attorney. Yet, there are many difficulties in the actual application of this idea. Dr. Shalev's article in this issue, to which this editorial relates, discusses the problems of communication between doctor and patient at the stage of preparing advance directives, and suggests a way to handle these deliberations. The Israeli law of 2005 provides some original solutions to other obstacles presented in the Literature as causing "the failure of the Living will". One resolution is the requirement that an explanation of the relevant medical information be given by a doctor or a nurse to the person who wishes to prepare written advance directives. This article suggests that the required explanation should be given within the framework of a discussion that simulates a process of informed consent for an unknown scenario at the end-of-life. Such discussions should be conducted as a dialogue, in which the doctor, first and foremost, Listens to the patient in order to clarify his/her worries and wishes, according to which specific medical orders can then be formulated.

  10. End-of-Life Care Interventions: An Economic Analysis

    PubMed Central

    Pham, B; Krahn, M

    2014-01-01

    Background The annual cost of providing care for patients in their last year of life is estimated to account for approximately 9% of the Ontario health care budget. Access to integrated, comprehensive support and pain/symptom management appears to be inadequate and inequitable. Objective To evaluate the cost-effectiveness of end-of-life (EoL) care interventions included in the EoL care mega-analysis. Data Sources Multiple sources were used, including systematic reviews, linked health administration databases, survey data, planning documents, expert input, and additional literature searches. Review Methods We conducted a literature review of cost-effectiveness studies to inform the primary economic analysis. We conducted the primary economic analysis and budget impact analysis for an Ontario cohort of decedents and their families and included interventions pertaining to team-based models of care, patient care planning discussions, educational interventions for patients and caregivers, and supportive interventions for informal caregivers. The time horizon was the last year of life. Costs were in 2013 Canadian dollars. Effectiveness measures included days at home, percentage dying at home, and quality-adjusted life-days. We developed a Markov model; model inputs were obtained from a cohort of Ontario decedents assembled from Institute for Clinical Evaluative Sciences databases and published literature. Results In-home palliative team care was cost-effective; it increased the chance of dying at home by 10%, increased the average number of days at home (6 days) and quality-adjusted life-days (0.5 days), and it reduced costs by approximately $4,400 per patient. Expanding in-home palliative team care to those currently not receiving such services (approximately 45,000 per year, at an annual cost of $76–108 million) is likely to improve quality of life, reduce the use of acute care resources, and save $191–$385 million in health care costs. Results for the other

  11. Australian nursing students' stories of end-of-life care simulation.

    PubMed

    Gillan, Pauline Catherine; van der Riet, Pamela; Jeong, Sarah

    2016-03-01

    Because nurses are at the forefront of end-of-life care, it is imperative that nursing students are prepared for this role upon graduation. Research suggests that many nursing students are unprepared to deliver compassionate and quality end-of-life care. There have been many attempts to address this need; one emerging method is end-of-life care simulation. This paper explores the experiences of 18 undergraduate nursing students of end-of-life care simulation. Participants' stories were obtained via observation during end-of-life care simulation, audio-recorded post simulation debriefing, and semi-structured interviews. Using Clandinin and Connolly's three dimensions of Narrative Inquiry (temporality, spatiality, and sociality) participants' stories reflected convergence of time, place, and person. Findings revealed three distinct plotlines along a time continuum, specifically surrounding time of death: (i) "The privilege of end-of-life care;" (ii) "Witnessing death as surreal;" and (iii) "The honor of providing after-death care." Participants' narratives suggest that end-of-life care simulation is an important means of preparing students for clinical end-of-life care experiences. This has implications for nursing educators wishing to consider simulation in end-of-life care education.

  12. Palliative and end of life care for people living with dementia in care homes: part 1.

    PubMed

    Mitchell, Gary; Agnelli, Joanne; McGreevy, Jessie; Diamond, Monica; Roble, Herlindina; McShane, Elaine; Strain, Joanne

    2016-06-22

    The terms palliative and end of life care are often used interchangeably and healthcare practitioners may perceive that palliative care is only appropriate during the terminal stages of an illness. This article, the first of two parts, provides healthcare practitioners with an overview of the concept of palliative care. It explains how this can be differentiated from end of life care and how it should be commenced in a timely manner, so that people who are living with dementia can contribute to the planning of their future care and death. The policies and tools used in the provision of palliative and end of life care are discussed, including advance care planning and The Gold Standards Framework. The article is framed in a care home context; there is little research about how to optimise palliative care for people living with dementia in care homes. The second part of this article will discuss end of life care and the best practices for providing end of life care, including nutrition and hydration, oral hygiene, pain management and spiritual care.

  13. Nurses need access to high-quality education in end of life care.

    PubMed

    2017-03-31

    End of life care is often explored in the pages of Nursing Older People, including in an article on the development, implementation and evaluation of an end of life care intervention in care homes that appeared in our February edition ( Cox et al 2017 ).

  14. End-of-Life Care in an Acute Care Hospital: Linking Policy and Practice

    ERIC Educational Resources Information Center

    Sorensen, Ros; Iedema, Rick

    2011-01-01

    The care of people who die in hospitals is often suboptimal. Involving patients in decisions about their care is seen as one way to improve care outcomes. Federal and state government policymakers in Australia are promoting shared decision making in acute care hospitals as a means to improve the quality of end-of-life care. If policy is to be…

  15. Innovative Models for Developing Post-Masters Curriculum in End-of-Life Care

    ERIC Educational Resources Information Center

    Berzoff, Joan; Dane, Barbara; Cait, Cheryl-Anne

    2005-01-01

    Given two million deaths annually in the U. S., social work education and training have been cited as woefully inadequate in end-of-life care. In response, two of the authors developed two post-Masters programs in end-of-life care for social work. This paper describes their curricula and the methods used to evaluate both programs, including…

  16. End-of-Life Care Education for Psychiatric Residents: Attitudes, Preparedness, and Conceptualizations of Dignity

    ERIC Educational Resources Information Center

    Tait, Glendon R.; Hodges, Brian D.

    2009-01-01

    Objective: The authors examined psychiatric residents' attitudes, perceived preparedness, experiences, and needs in end-of-life care education. They also examined how residents conceptualized good end-of-life care and dignity. Methods: The authors conducted an electronic survey of 116 psychiatric residents at the University of Toronto. The survey…

  17. Inpatient Hospitalization of Oncology Patients: Are We Missing an Opportunity for End-of-Life Care?

    PubMed Central

    Rocque, Gabrielle B.; Barnett, Anne E.; Illig, Lisa C.; Eickhoff, Jens C.; Bailey, Howard H.; Campbell, Toby C.; Stewart, James A.; Cleary, James F.

    2013-01-01

    Introduction: Despite advances in the care of patients with cancer over the last 10 years, cancer remains the second leading cause of death in the United States. Many patients receive aggressive, in-hospital end-of-life care at high cost. There are few data on outcomes after unplanned hospitalization of patients with metastatic cancer. Methods: In 2000 and 2010, data were collected on admissions, interventions, and survival for patients admitted to an academic inpatient medical oncology service. Results: The 2000 survey included 191 admissions of 151 unique patients. The 2010 survey assessed 149 admissions of 119 patients. Lung, GI, and breast cancers were the most common cancer diagnoses. In the 2010 assessment, pain was the most common chief complaint, accounting for 28%. Although symptoms were the dominant reason for admission in 2010, procedures and imaging were common in both surveys. The median survival of patients after discharge was 4.7 months in 2000 and 3.4 months in 2010. Despite poor survival in this patient population, hospice was recommended in only 23% and 24% of patients in 2000 and 2010, respectively. Seventy percent of patients were discharged home without additional services. Conclusion: On the basis of our data, an unscheduled hospitalization for a patient with advanced cancer strongly predicts a median survival of fewer than 6 months. We believe that hospital admission represents an opportunity to commence and/or consolidate appropriate palliative care services and end-of-life care. PMID:23633971

  18. Do Personality Traits Moderate the Impact of Care Receipt on End-of-Life Care Planning?

    ERIC Educational Resources Information Center

    Ha, Jung-Hwa; Pai, Manacy

    2012-01-01

    Purpose of the Study: This study examines (a) the association between being a care recipient and end-of-life care planning (EOLCP) and (b) the extent to which personality traits moderate the relationship between care receipt and EOLCP. Design and Methods: Data are drawn from the Wisconsin Longitudinal Study, a survey of Wisconsin high school…

  19. End-of-Life Decisions: An Important Theme in the Care for People with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Wagemans, A.; van Schrojenstein Lantman-de-Valk, H.; Tuffrey-Wijne, I.; Widdershoven, G.; Curfs, L.

    2010-01-01

    Background: While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing residential care for 335 people with IDs. Method: A…

  20. Pharmacy Students' Attitudes Toward Death and End-of-life Care

    PubMed Central

    Broeseker, Amy E.

    2010-01-01

    Objectives To assess pharmacy students' attitudes toward death and end-of-life care. Methods Third-year pharmacy students enrolled in the Ethics in Christianity and Health Care course were administered a survey instrument prior to introduction of the topic of end-of-life care. Students' attitudes toward different professions' roles in end-of-life care and their comfort in discussing end-of-life issues were assessed. The survey instrument was readministered to the same students at the end of their fourth year. Results On most survey items, female students responded more favorably toward death and end-of-life care than male students. One exception was the perceived emotional ability to be in the room of a dying patient or loved one. Post-experiential survey responses were generally more favorable toward death and end-of-life care than were pre-discussion responses. Conclusions In general, when surveyed concerning death and end-of-life care, female students responded more favorably than male students, and responses at the end of the fourth year were more favorable than at the beginning of the course. PMID:21045946

  1. End-of-life Heart Failure Care in the United States.

    PubMed

    Buggey, Jonathan; Mentz, Robert J; Galanos, Anthony N

    2015-10-01

    Heart failure (HF) is increasingly common in the United States and is associated with a high degree of morbidity and mortality. As patients approach the end of life there is a significant increase in health care resource use. Patients with end-stage HF have a unique set of needs at the end of life, including symptoms such as dyspnea, uremia, and depression, as well as potentially deactivating implantable defibrillators and mechanical circulatory support devices. Improved palliative care services for patients with HF may improve quality of life and decrease health care resource use near the end of life.

  2. Embracing a broad spirituality in end of life discussions and advance care planning.

    PubMed

    Churchill, Larry R

    2015-04-01

    Advance care planning for end of life typically focuses on the mechanics of completing living wills and durable power of attorney documents. Even when spiritual aspects of end of life care are discussed, the dominant assumptions are those of traditional religious systems. A broad view of spirituality is needed, one that may involve traditional religious beliefs but also includes personal understandings of what is holy or sacred. Embracing this broad practice of spirituality will help both familial and professional caregivers honor an essential aspect of end of life discussions and promote greater discernment of the deep meaning in advance care documents.

  3. Long-Term Care Benefits May Reduce End-of-Life Medical Care Costs

    PubMed Central

    Evered, Sharrilyn R.; Center, Bruce A.

    2014-01-01

    Abstract This study explores whether personal care services for functionally dependent or cognitively impaired individuals paid for by a long-term care (LTC) insurance policy can reduce health care utilization and costs at the end of life. This retrospective study uses propensity score matching methodology, hierarchical multiple regression, and Poisson regression to compare 830 decedents who utilized benefits from a voluntary LTC insurance plan (“claimants”) to 6860 decedents who never purchased coverage but were similar to claimants on 17 variables, including age, sex, frailty, burden of illness markers, and propensity to have needed LTC services. Claimants using LTC benefits experienced significantly lower health care costs at end of life, including 14% lower total medical costs, 13% lower pharmacy costs, 35% lower inpatient admission costs, and 16% lower outpatient visit costs. They also experienced 8% fewer inpatient admissions and 10% fewer inpatient days. The presence of dementia at the end of life moderated these effects. This study suggests that use of insurance-based LTC services measurably reduces health care expenditures at the end of life. (Population Health Management 2014;17:332–339) PMID:24784144

  4. Reconsidering long-term care in the end-of-life context in Japan.

    PubMed

    Shimada, Chiho; Hirayama, Ryo; Wakui, Tomoko; Nakazato, Kazuhiro; Obuchi, Shuichi; Ishizaki, Tatsuro; Takahashi, Ryutaro

    2016-03-01

    In this article, we propose expanding the scope of long-term care such that it involves caring for dying individuals; that is, end-of-life care. In doing so, we identify challenges that families and care/medical professionals face in attempts to design and provide end-of-life care under Japan's societal contexts. Because of the difficulty judging whether an individual is in an end-of-life phase, as well as a growing number of older adults who are unable to communicate their care preferences as a result of cognitive impairment, efforts were almost automatically made to prolong older patients' lives. To respect patients' desires and values, communication among older adults, their families, and care/medical professionals has been increasingly encouraged to make a mutually agreeable end-of-life care decision. At the same time, older adults are expected to indicate their care preferences earlier because their ability to express their ideas should be limited when approaching the end-of-life phase. We thus suggest including advance care planning in the course of long-term care such that older adults, with the help of care/medical professionals, can tell their preferences to their families, who are required to serve as surrogate decision makers in Japan. Our research, however, has shown that Japanese older adults are hesitant to discuss end-of-life issues with their families. On the basis of our findings suggesting older adults' concern that they might make trouble for their families by clarifying their care preferences, we discuss how care/medical professionals should facilitate family discussions on end-of-life care.

  5. Getting the priorities right in end-of-life care.

    PubMed

    Anderson, Pat

    The Leadership Alliance for the Care of Dying People has drawn up five priorities for the care of dying people. The priorities replace the Liverpool Care Pathway, which was widely criticised for promoting a tick-box approach to the care of the dying. The five priorities focus on: recognising that someone is dying; communicating sensitively with them and their family; involving them in decisions; supporting them and their family; and creating an individual plan of care that includes adequate nutrition and hydration. The alliance has outlined the duties and responsibilities of nurses and other health professionals when caring for people at the end of their lives, with an emphasis on compassionate care.

  6. Allowing Family to be Family: End-of-Life Care in Veterans Affairs Medical Foster Homes.

    PubMed

    Manheim, Chelsea E; Haverhals, Leah M; Jones, Jacqueline; Levy, Cari R

    2016-01-01

    The Medical Foster Home program is a unique long-term care program coordinated by the Veterans Health Administration. The program pairs Veterans with private, 24-hour a day community-based caregivers who often care for Veterans until the end of life. This qualitative study explored the experiences of care coordination for Medical Foster Home Veterans at the end of life with eight Veterans' family members, five Medical Foster Home caregivers, and seven Veterans Health Administration Home-Based Primary Care team members. A case study, qualitative content analysis identified these themes addressing care coordination and impact of the Medical Foster Home model on those involved: (a) Medical Foster Home program supports Veterans' families; (b) Medical Foster Home program supports the caregiver as family; (c) Veterans' needs are met socially and culturally at the end of life; and (d) the changing needs of Veterans, families, and caregivers at Veterans' end of life are addressed. Insights into how to best support Medical Foster Home caregivers caring for Veterans at the end of life were gained including the need for more and better respite options and how caregivers are compensated in the month of the Veteran's death, as well as suggestions to navigate end-of-life care coordination with multiple stakeholders involved.

  7. End of Life (Caring for a Dying Loved One)

    MedlinePlus

    ... Hospice care — services that help ensure the highest quality of life for whatever time remains — can be provided at home as well. Inpatient care. Some people might prefer round-the-clock care at a nursing home, hospital or dedicated inpatient hospice facility. Hospice ...

  8. [Caring for persons at the end of life in a curative care unit: privileges and heartbreaks].

    PubMed

    Fortin, Marie-Laurence; Bouchard, Louise

    2009-01-01

    The objective of this study was to describe the experience of caring for individuals at the end of life by five nurses working in curative care units. Semi-structured interviews were conducted to gain a better understanding of the meaning nurses give to this experience. The analysis of results, based on Giorgi's phenomenological method (1997), highlighted a central meaning: it is a human experience fraught with paradoxes where the bedside nurse feels both privileged to be accompanying these individuals at the end of their lives and torn between the medical priority given to curative care and the lesser priority given to palliative care. This study offers relevant options for nurse managers wanting to improve these nurses' work environment and the quality of care for individuals at the end of life.

  9. Parent Perspectives of Neonatal Intensive Care at the End-of-Life.

    PubMed

    Currie, Erin R; Christian, Becky J; Hinds, Pamela S; Perna, Samuel J; Robinson, Cheryl; Day, Sara; Meneses, Karen

    2016-01-01

    This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the primary theme with the following categories: ups and downs of parenting in the NICU, decision-making challenges in the NICU, and parent support. Parents encountered challenges with areas for improvement for end-of-life and palliative care in the NICU. Further research is necessary to understand barriers with integrating palliative care and curative care in the NICU, and how NICU care affects bereavement and coping outcomes after infant death.

  10. Process evaluation of an educational intervention to improve end-of-life care: the Education for Physicians on End-of-Life Care (EPEC) program.

    PubMed

    VanGeest, J B

    2001-01-01

    Despite the growing importance of end-of-life care and the need to improve it, physicians receive little formal training in palliative care. The Education for Physicians on End-of-life Care (EPEC) project, developed by the American Medical Association and the Robert Wood Johnson Foundation, tested a train-the-trainer educational intervention to address this deficiency. This paper presents data from a process evaluation of the initial rollout of EPEC. By all accounts, EPEC provided a state-of-the-art curriculum covering important and clinically relevant topics to the care of the dying patient. It was less clear, however, if EPEC adequately prepared trainees to teach these new skills to other practicing physicians. Factors that may advance efforts to generalize EPEC to other settings and improve future applications of the program are discussed.

  11. Using routine data to improve palliative and end of life care.

    PubMed

    Davies, Joanna M; Gao, Wei; Sleeman, Katherine E; Lindsey, Katie; Murtagh, Fliss E; Teno, Joan M; Deliens, Luc; Wee, Bee; Higginson, Irene J; Verne, Julia

    2016-09-01

    Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data.

  12. Using routine data to improve palliative and end of life care

    PubMed Central

    Davies, Joanna M; Gao, Wei; Sleeman, Katherine E; Lindsey, Katie; Murtagh, Fliss E; Teno, Joan M; Deliens, Luc; Wee, Bee; Higginson, Irene J; Verne, Julia

    2016-01-01

    Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data. PMID:26928173

  13. End-of-life Nursing Education Consortium (ELNEC) Training Program: improving palliative care in critical care.

    PubMed

    Ferrell, Betty R; Dahlin, Constance; Campbell, Margaret L; Paice, Judith A; Malloy, Pam; Virani, Rose

    2007-01-01

    The integration of palliative care in critical care settings is essential to improve care of the dying, and critical care nurses are leaders in these efforts. However, lack of education in providing end-of-life (EOL) care is an obstacle to nurses and other healthcare professionals as they strive to deliver palliative care. Education regarding pain and symptom management, communication strategies, care at the end of life, ethics, and other aspects of palliative care are urgently needed. Efforts to increase EOL care education in most undergraduate and graduate nursing curricula are beginning; yet, most critical care nurses have not received formal training in palliative care. Moreover, educational resources such as critical care nursing textbooks often contain inadequate information on palliative care. The ELNEC-Critical Care program provides a comprehensive curriculum that concentrates on the requirements of those nurses who are working in areas of critical care. Extensive support materials include CD-ROM, binder, Web sites, newsletters, textbooks, and other supplemental items. The ultimate goal is to improve EOL care for patients in all critical care settings and enhance the experience of family members witnessing the dying process of their loved ones.

  14. Culturally Diverse Communities and End-of-Life Care

    MedlinePlus

    ... often believe that the health care staff have negative attitudes toward them, use unclear technical terms, and ... the community’s duty and obligation. Caregivers benefit from social support, maintaining social activities and roles, and psychological interventions ...

  15. Impact of a Palliative Care Elective Course on Nursing Students' Knowledge and Attitudes Toward End-of-Life Care.

    PubMed

    Robinson, Evelyn; Epps, Fayron

    2016-10-17

    Being knowledgeable about end-of-life care can help nurses overcome barriers to managing chronicity in terminally ill patients. The purpose of this causal-comparative research study was to examine the influence of a palliative care elective course on 74 senior nursing students' knowledge and attitudes toward providing end-of-life care. This study compared the differences between 2 groups of students, with 1 group receiving end-of-life care instruction based on the principles of the End-of-Life Nursing Education Consortium as an elective course.

  16. Evaluating strategies for changing acute care nurses' perceptions on end-of-life care.

    PubMed

    Kruse, Barbara G; Melhado, Lolita W; Convertine, Linda; Stecher, Jo

    2008-01-01

    Providing quality care to the dying has become a primary concern in the United States. Eighty percent of deaths still occur in the hospital even though nurses report they do not think that good deaths are routinely possible within a hospital setting due to lack of appropriate education on end-of-life care. The aim of this pilot study was to test the best method for changing acute nurse's perceptions about end-of-life care. A 3-group experimental design tested the efficacy of a nurse-led hospice collaborative. Hypotheses were: (1) nurses who receive classroom instruction will have greater change in perceptions than the control group and (2) nurses who receive a combination of classroom and hospice experiences will demonstrate greater changes than the classroom or control group. No significant differences were found among the 3 groups. However, the intervention group showed increased guilt about not having enough time to spend with the dying.

  17. Staff Carers' Understanding of End of Life Care

    ERIC Educational Resources Information Center

    Friedman, Sandra L.; Choueiri, Roula; Gilmore, Dana

    2008-01-01

    Staff carers in pediatric skilled nursing facilities (PSNF) deal directly with dying residents, and are on the forefront of communication with families. These providers have expressed misunderstandings regarding the meaning of resuscitation status and redirection of care. This descriptive study evaluated perceptions and understanding of end of…

  18. Achieving Quality Care at the End of Life: A Focus of the End-of-Life Nursing Education Consortium (ELNEC) Curriculum.

    ERIC Educational Resources Information Center

    Sherman, Deborah Witt; Matzo, Marianne LaPorte; Rogers, Susan; McLaughlin, Maureen; Virani, Rose

    2002-01-01

    Describes one of nine modules in the End-of-Life Nursing Education Consortium Curriculum, a train-the-trainer course to prepare nurses for palliative care. Discuses teaching strategies to achieve high-quality care and includes a list of print and web resources. (SK)

  19. End-of-life and palliative care education in US pharmacy schools.

    PubMed

    Dickinson, George E

    2013-09-01

    The objective of this endeavor was to ascertain the current status of end-of-life and palliative care within the curriculum of US pharmacy schools and compare to a similar 1986 study. Additionally, responses to recent professional guidelines for pharmacy schools regarding end-of-life issues can be addressed. A fixed-choice survey was mailed to the 125 US pharmacy schools with a 49% response rate. Results revealed that the lecture format of teaching on end-of-life issues continues to be used today with an increase in offerings and greater participation by students than in 1986. Recently established guidelines and standards regarding end-of-life issues for pharmacy schools are being addressed, thus today's pharmacists should be better prepared to relate to patients with terminal illnesses and their families than in 1986.

  20. Nurse Practitioners: Knowledge, Skills, and Leadership for the End-of-Life Conversation in Intensive Care.

    PubMed

    McRee, Laura; Reed, Pamela G

    2016-01-01

    An impending policy change in Medicare will provide reimbursement for the end-of-life conversation. The rise in numbers of older adults who face serious illness coupled with advances in healthcare technology are increasing the need for providers to address end of life issues in the acute care setting. Doctoral-level nurse practitioners who specialize in acute care of older adults are poised to be leaders and facilitators of this conversation in a particularly challenging context-the intensive care unit. The focus of this article is the new end-of-life policy in relation to the particular contributions that adult gerontology acute care nurse practitioners offer in the acute care setting.

  1. End-of-life care for people with dementia from ethnic minority groups: a systematic review.

    PubMed

    Connolly, Amanda; Sampson, Elizabeth L; Purandare, Nitin

    2012-02-01

    A systematic review of the literature was conducted to examine the relationship between ethnic minority status and provision of end-of-life care for people with dementia. It included all empirical research on people with dementia or severe cognitive impairment or their caregivers and with ethnic minority people as a subgroup in examining an outcome involving end-of-life care processes or attitudes toward end-of-life care. Two authors independently rated quality of included studies; 20 studies met eligibility criteria and were included in the review: 19 quantitative and one qualitative. All articles were based in the United States, with African American, Hispanic, and Asian groups being the ethnic minorities. Artificial nutrition and other life-sustaining treatments were more frequent and decisions to withhold treatment less common in African American and Asian groups. The qualitative evidence, albeit limited, found that attitudes toward end-of-life care were more similar than different between different ethnic groups. Differences in hospice usage patterns were less consistent and potentially influenced by factors such as study setting and dementia severity. Caregivers' experiences differed between ethnic groups, whereas levels of strain experienced were similar. Disparities in end-of-life care for people with dementia from ethnic minority groups appear to exist and may be due to the double disadvantage of dementia and ethnic minority status. Further research is needed in other western multicultural countries, with a focus on prospective qualitative studies to understand the underlying reasons for these differences, not just their occurrence.

  2. Psychometric characteristics of a quality of communication questionnaire assessing communication about end-of-life care.

    PubMed

    Engelberg, Ruth; Downey, Lois; Curtis, J Randall

    2006-10-01

    The importance of good clinician-patient communication to quality end-of-life care has been well documented yet there are no validated measures that allow patients to assess the quality of this communication. Using a sample of hospice patients (n = 83) and patients with chronic obstructive pulmonary disease (COPD) (n = 113), we evaluated the psychometric characteristics of a 13-item patient-centered, patient-report questionnaire about the quality of end-of-life communication (QOC). Our purpose was to explore the measurement structure of the QOC items to ascertain if the items represent unitary or multidimensional constructs and to describe the construct validity of the QOC score(s). Analyses included: principal component analyses to identify scales, internal consistency analyses to demonstrate reliability, and correlational and group comparisons to support construct validity. Findings support the construction of two scales: a six-item "general communication skills" scale and a seven-item, "communication about end-of-life care" scale. The two scales meet standards of scale measurement, including good factor convergence (values >or= 0.63) and discrimination (values different >or= 0.25), percent of variance explained (69.3%), and good internal consistency (alpha >or= 0.79). The scales' construct validity is supported by significant associations (p care, number and type of end-of-life discussions, and doctor's awareness of patient's treatment preferences. The general communication skills scale correlates more strongly with the general communication items while the communication about end-of-life care scale correlates more strongly with items addressing end-of-life topics. While further validation studies are needed, this assessment of the QOC represents an important step toward providing a measure of the quality of end-of-life communication.

  3. [Conversations about end-of-life in the intensive care unit].

    PubMed

    Vanden Bergh, Hilke; Wild, Dorothea M G

    2015-01-01

    End-of-life decisions are frequently necessary in intensive care units. These decisions are made more difficult through rapidly changing disease dynamics, lack of continuity of care, differing expectations, as well as a lack of support. In these situations, structured communication concepts can help families and staff, e. g. through structured family conferences, the concept of family as the expert for the patient's preferences, and empathetic reactions to emotions. The article discusses concrete strategies how to communicate about end-of-life care.

  4. LGBT people's knowledge of and preparedness to discuss end-of-life care planning options.

    PubMed

    Hughes, Mark; Cartwright, Colleen

    2014-09-01

    Despite the devastating impact of HIV/AIDS, end-of-life care planning among lesbian, gay, bisexual and transgender (LGBT) communities is relatively under-researched, especially in Australia. This paper reports findings of a survey of 305 LGBT people living in New South Wales, which examined their knowledge of and attitudes towards end-of-life care. The focus of this paper is their preparedness to discuss with healthcare providers any end-of-life care plans. The results highlight that while the majority of respondents were aware of three of the four key end-of-life care planning options available in New South Wales--enduring powers of attorney, enduring guardians and person responsible (only a minority had heard of advance healthcare directives)--a much smaller number of people had actually taken up these options. Only a minority of respondents were able to identify correctly who had the legal right to make treatment decisions for a person who is unconscious following a car accident. A small proportion of people had discussed end-of-life care options with general practitioners or another main healthcare provider, and only in very few cases were these issues raised by the practitioners themselves. Those most likely to not feel comfortable discussing these issues with practitioners included younger people, those not fully open about their sexuality to family members, and transgender people and others who do not define their gender as male or female. The paper highlights the importance of education strategies to raise awareness of the end-of-life care planning options among LGBT people, as well as strategies for increasing health providers' preparedness to discuss these issues with LGBT patients.

  5. Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care.

    ERIC Educational Resources Information Center

    American Association of Colleges of Nursing, Washington, DC.

    A group of health care ethicists and palliative care experts convened by the American Association of Colleges of Nursing developed a set of competencies that should be achieved through nursing curricula. The purpose of the 15 competency statements is to assist nurse educators in incorporating end-of-life content into nursing curricula. Every…

  6. Hospice in Assisted Living: Promoting Good Quality Care at End of Life

    ERIC Educational Resources Information Center

    Cartwright, Juliana C.; Miller, Lois; Volpin, Miriam

    2009-01-01

    Purpose: The purpose of this study was to describe good quality care at the end of life (EOL) for hospice-enrolled residents in assisted living facilities (ALFs). Design and Methods: A qualitative descriptive design was used to obtain detailed descriptions of EOL care provided by ALF medication aides, caregivers, nurses, and hospice nurses in…

  7. Informal Care and the Division of End-of-Life Transfers

    ERIC Educational Resources Information Center

    Brown, Meta

    2006-01-01

    Unmarried parents in the AHEAD study derive the majority of their long-term care hours from their children, and child caregivers are generally unpaid. This paper examines the extent to which the division of end-of-life transfers compensates caregiving children. In a model of siblings' altruistic contribution of care to a shared parent, the…

  8. The Allied Health Care Professional's Role in Assisting Medical Decision Making at the End of Life

    ERIC Educational Resources Information Center

    Lambert, Heather

    2012-01-01

    As a patient approaches the end of life, he or she faces a number of very difficult medical decisions. Allied health care professionals, including speech-language pathologists (SLPs) and occupational therapists (OTs), can be instrumental in assisting their patients to make advance care plans, although their traditional job descriptions do not…

  9. Towards a "good" death: end-of-life narratives constructed in an intensive care unit.

    PubMed

    Johnson, N; Cook, D; Giacomini, M; Willms, D

    2000-09-01

    End-of-life decisions regarding the withdrawal and withholding of life supporting technology have become commonplace within intensive care units (ICUs). In this paper, we examine the dialogue between ICU team members and families regarding limitation of treatment as a therapeutic narrative--that is, as a story which frames therapeutic events as well as the critically ill patient's experience in a meaningful and psychologically comforting way for families and health care providers alike. The key themes of these end-of-life narratives are discussed, as well as the qualities that the stories share with other narratives of the same genre.

  10. [Patients at the end of life in the intensive care unit: cultural aspects of accompaniment].

    PubMed

    Grom, I-U; Vagts, D A; Kampa, U; Pfeiffer, G; Schreiber-Winzig, L; Wiese, C H R

    2013-06-01

    The accompaniment of people in the face of death offers insights into dimensions which are mostly not seen in ordinary life. These insights also exist in intensive care in German hospitals and are highly relevant in medical decision making. End-of-life decisions in particular often determine medical, cultural and spiritual aspects concerning medical treatment and therapeutic targets and if necessary new therapy targets. The following article especially illuminates cultural aspects and their characteristics in patients at the end of life in the intensive care unit.

  11. Training Providers and Patients to Talk about End-of-Life Care | Division of Cancer Prevention

    Cancer.gov

    It has been observed and documented widely; most doctors and patients do not want to talk about death and dying. But failing to discuss transitions of care—from active cancer treatment to end-of-life care once treatment options have been exhausted—can leave doctors unsure of what a patient truly wants at the end of his or her life. And failing to receive end-of-life care in line with their values and wishes can cause both patients and their families great distress. |

  12. Family-focused children's end of life care in hospital and at home.

    PubMed

    Parker, Helen; Farrell, Mairead; Ryder, Allison; Fernley, Karen; Cox, Chantel; Farasat, Helen; Hewitt-Taylor, Jaqui

    2014-07-01

    An increasing number of children and young people require end of life care, and providing them and their families with optimum support at this time is crucial. This article describes how nurses working with children and families in home, hospital and community settings used the principles of practice development methodology to develop end of life care provision and follow-up bereavement support. It outlines the 'ways of knowing' that informed developments and how parents' priorities were kept central to the process. Finally, it discusses how the approach taken to practice development reflected the value of compassion in nursing practice.

  13. Completing the circle: elders speak about end-of-life care with aboriginal families in Canada.

    PubMed

    Hampton, Mary; Baydala, Angelina; Bourassa, Carrie; McKay-McNabb, Kim; Placsko, Cheryl; Goodwill, Ken; McKenna, Betty; McNabb, Pat; Boekelder, Roxanne

    2010-01-01

    In this article, we share words spoken by Aboriginal elders from Saskatchewan, Canada, in response to the research question, "What would you like non-Aboriginal health care providers to know when providing end-of-life care for Aboriginal families?" Our purpose in publishing these results in a written format is to place information shared by oral tradition in an academic context and to make the information accessible to other researchers. Recent theoretical work in the areas of death and dying suggests that cultural beliefs and practices are particularly influential at the end of life; however, little work describing the traditional beliefs and practices of Aboriginal peoples in Canada exists to guide culturally appropriate end-of-life care delivery. Purposive sampling procedures were used to recruit five elders from culturally diverse First Nations in southern Saskatchewan. Key informant Aboriginal elder participants were videotaped by two Aboriginal research assistants, who approached the elders at powwows. Narrative analysis of the key informant interview transcripts was conducted to identify key concepts and emerging narrative themes describing culturally appropriate end-of-life health care for Aboriginal families. Six themes were identified to organize the data into a coherent narrative: realization; gathering of community; care and comfort/transition; moments after death; grief, wake, funeral; and messages to health care providers. These themes told the story of the dying person's journey and highlighted important messages from elders to non-Aboriginal health care providers.

  14. [Palliative care: between humanization and medicalization at the end of life].

    PubMed

    Alonso, Juan Pedro

    2013-09-01

    This paper analyzes the palliative care of terminal patients, examining the tensions between the humanization of care and the progressive medicalization at the end-of-life situation. The research upon which the article is based adopts a qualitative methodological approach derived from interviews with professionals and patients and ethnographic observations in a palliative care unit in the City of Buenos Aires, Argentina. The article describes the configuration of personalized and comprehensive health care based on the core values of more humanized end-of-life care promoted by palliative care supporters. Similarly, the paper analyzes how these practices are assisted by progress in the medicalization process in which the dimension of care is considered less an unprofessional area of medical practice than an area of care in which specific technical skills and know-how are employed. The articles explores how instead of being divergent, the logic of care and medicalization work in a complementary fashion.

  15. Characteristics of Prison Hospice Patients: Medical History, Hospice Care, and End-of-Life Symptom Prevalence.

    PubMed

    Cloyes, Kristin G; Berry, Patricia H; Martz, Kim; Supiano, Katherine

    2015-07-01

    Increasing numbers of prisoners in the United States are dying from age-related and chronic illnesses while incarcerated. This study is among the first to document characteristics of a population of prison hospice patients. Retrospective review of medical records for all patients admitted to the Louisiana State Penitentiary prison hospice program between January 1, 2004, and May 31, 2012 (N = 79) examined demographics, medical history, hospice diagnosis, length of stay, and end-of-life symptom prevalence on admission and during final 72 hours before death. Resulting data were contrasted with community-based end-of-life care study data, demonstrating a unique clinical profile of this group. As prisons consider adopting programs to meet the growing need for inmate end-of-life care, more research concerning the particular characteristics and unique needs of prison hospice patients will inform these efforts.

  16. End-of-Life Care for Undocumented Immigrants With Advanced Cancer: Documenting the Undocumented.

    PubMed

    Jaramillo, Sylvia; Hui, David

    2016-04-01

    There are approximately 11.1 million undocumented immigrants in the United States, with a majority being Latino. Cancer is now the leading cause of death in Latinos. There is little research guiding providers on how to deliver optimal end-of-life care in this population. We describe a case of an undocumented Latino patient with advanced cancer, and provide a review of the literature on end-of-life care in undocumented immigrants. Our patient encountered many challenges as he navigated through the healthcare system in the last months of life. These included delayed diagnosis, limited social support, financial issues, fear of deportation, and language and cultural barriers, which resulted in significant physical and psychological distress. Within the undocumented patient population, there is often a lack of advance care planning, prognostic understanding, mistrust, religious practices, and cultural beliefs that may affect decision making. Given the growing number of undocumented immigrants in the United States, it is important for clinicians and policy makers to have a better understanding of the issues surrounding end-of-life care for undocumented immigrants, and work together to improve the quality of life and quality of end-of-life care for these disadvantaged individuals.

  17. Rural-Urban Differences in End-of-Life Nursing Home Care: Facility and Environmental Factors

    ERIC Educational Resources Information Center

    Temkin-Greener, Helena; Zheng, Nan Tracy; Mukamel, Dana B.

    2012-01-01

    Purpose of the study: This study examines urban-rural differences in end-of-life (EOL) quality of care provided to nursing home (NH) residents. Data and Methods: We constructed 3 risk-adjusted EOL quality measures (QMs) for long-term decedent residents: in-hospital death, hospice referral before death, and presence of severe pain. We used…

  18. Integrating end-of-life care with disease management programs: a new role for case managers.

    PubMed

    Lazarus, A

    2001-03-01

    Case managers are crucial to any well-designed disease management program. However, in the progressive course of serious illness, patients, their families, and MCOs need the skills of case manager more than ever to help them through end-of-life care choices. The author describes what case managers will need in their "toolbox" to provide insight to these health plan members.

  19. [The nursing role and ethical dimension of end of life care].

    PubMed

    Daydé, Marie-Claude

    2016-02-01

    Supporting people in situations of precarity at the end of life is often fraught with complex problems, where one form of vulnerability amplifies another. This complexity requires interdisciplinary support, around the nursing care, to reflect together on the meaning of the action taken in an ethical approach.

  20. Planning and Providing End-of-life Care in Rural Areas

    ERIC Educational Resources Information Center

    Wilson, Donna M.; Justice, Christopher; Sheps, Sam; Thomas, Roger; Reid, Pam; Leibovici, Karen

    2006-01-01

    Context: Approximately 20% of North Americans and 25% of Europeans reside in rural areas. Planning and providing end-of-life (EOL) care in rural areas presents some unique challenges. Purpose: In order to understand these challenges, and other important issues or circumstances, a literature search was conducted to assess the state of science on…

  1. Family Perspectives on End-of-Life Care Experiences in Nursing Homes

    ERIC Educational Resources Information Center

    Wetle, Terrie; Shield, Renee; Teno, Joan; Miller, Susan C.; Welch, Lisa

    2005-01-01

    Purpose: The purpose of this study is to expand knowledge regarding end-of-life care received in nursing homes through the use of narrative interviews with family members close to the decedents. Design and Methods: We conducted follow-up qualitative interviews with 54 respondents who had participated in an earlier national survey of 1,578…

  2. Excellence in Teaching End-of-Life Care. A New Multimedia Toolkit for Nurse Educators.

    ERIC Educational Resources Information Center

    Wilkie, Diana J.; Judge, Kay M.; Wells, Marjorie J.; Berkley, Ila Meredith

    2001-01-01

    Describes a multimedia toolkit for teaching palliative care in nursing, which contains modules on end-of-life topics: comfort, connections, ethics, grief, impact, and well-being. Other contents include myths, definitions, pre- and postassessments, teaching materials, case studies, learning activities, and resources. (SK)

  3. A Framework for Categorizing Social Interactions Related to End-of-Life Care in Nursing Homes

    ERIC Educational Resources Information Center

    Bern-Klug, Mercedes

    2009-01-01

    Purpose: Almost half of people age 85 and older who die annually in the United States die as nursing home residents, yet because it is not always clear who is close to death, not all residents who might benefit from end-of-life care receive it. The purpose of this study is to develop a framework for organizing social interactions related to…

  4. End-of-Life Care for People with Intellectual Disabilities: Paid Carer Perspectives

    ERIC Educational Resources Information Center

    Ryan, Karen; Guerin, Suzanne; Dodd, Philip; McEvoy, John

    2011-01-01

    Background: Little is known of paid carers' perspectives when caring for people with intellectual disabilities at the end-of-life. Materials and methods: Sixty four individuals from intellectual disability services took part in 12 focus groups. Interviews were analysed using framework analysis. Results: Participants wanted to provide palliative…

  5. Care at the End of Life: A Novel Curriculum Module Implemented by Medical Students.

    ERIC Educational Resources Information Center

    Magnani, Jared W.; Minor, Melissa A.; Aldrich, Jon Matthew

    2002-01-01

    Describes the development, implementation, and evaluation of a curriculum module on end-of-life care developed by medical students and implemented at Stanford University School of Medicine. The curriculum teaches students a protocol for communicating with patients when breaking bad news and discussing treatment options. (EV)

  6. Planning for End-of-Life Care: Findings from the Canadian Study of Health and Aging

    ERIC Educational Resources Information Center

    Garrett, Douglas D.; Tuokko, Holly; Stajduhar, Kelli I.; Lindsay, Joan; Buehler, Sharon

    2008-01-01

    Steps involved in formalizing end-of-life care preferences and factors related to these steps are unclear in the literature. Using data from the third wave of the Canadian Study of Health and Aging (CSHA-3), we examined the relations between demographic and health predictors, on the one hand, and three outcomes, on the other (whether participants…

  7. [Support at the end of life in care homes by nursing assistants].

    PubMed

    Croyère, Nicole

    2015-11-01

    In nursing homes, the nursing assistant supports patients at the end of life, notably as they move into palliative care. This involves team work to relieve pain, limit treatments considered disproportionate and improve comfort. Relations with the residents and their families are particularly important in this context.

  8. The Social Stratification of Older Adults' Preparations for End-of-Life Health Care

    ERIC Educational Resources Information Center

    Carr, Deborah

    2012-01-01

    I use data from the Wisconsin Longitudinal Study (n = 4,971) to evaluate the extent to which socioeconomic status affects three health-related (living will, durable power of attorney for health care, and discussions) and one financial (will) component of end-of-life planning. Net worth is positively associated with all four types of planning,…

  9. Balancing: a basic process in end-of-life cancer care.

    PubMed

    Thulesius, Hans; Håkansson, Anders; Petersson, Kerstin

    2003-12-01

    In this grounded theory study, the authors interviewed caregivers and patients in end-of-life cancer care and found Balancing to be a fundamental process explaining the problem-solving strategies of most participants and offering a comprehensive perspective on both health care in general and end-of-life cancer care in particular. Balancing stages were Weighing--sensing needs and wishes signaled by patients, gauging them against caregiver resources in diagnosing and care planning; Shifting--breaking bad news, changing care places, and treatments; and Compensating--controlling symptoms, educating and team-working, prioritizing and "stretching" time, innovating care methods, improvising, and maintaining the homeostasis of hope. The Balancing outcome is characterized by Compromising, or "Walking a fine line," at best an optimized situation, at worst a deceit.

  10. End of life care in nursing homes: Translating focus group findings into action.

    PubMed

    Bükki, Johannes; Neuhaus, Petra M; Paal, Piret

    Therapeutic options for nursing home residents focus on functional improvement, while inadequate hospital admissions in the dying phase are frequent. The aim of this study was to explore views, attitudes, and concerns among staff and to embark on a process that facilitates end-of-life care on an institutional level. Three focus group interviews were conducted with nursing home staff (nurses, care managers, physicians). The discussants (22) expressed the following issues: workload; ethical conflicts; additional resources; "living palliative care"; deleterious effect of restorative aims; lack of training; fear; knowledge and skills; rituals; lack of attachment, frustration, and abuse; team; discouragement; resilience enhanced by good care; style of communication; avoidance; the "palliative status"; legal concerns and hospital admissions. Nursing home staff expressed willingness to care for the dying. Providing good end of life care may promote professional resilience and personal integrity. Therefore, team issues, fears, and avoidance should be addressed.

  11. The attitudes of social work students toward end-of-life care planning.

    PubMed

    Kwon, Sung Ae; Kolomer, Stacey; Alper, Jamie

    2014-01-01

    This study examined the attitudes of social work students toward end-of-life care planning, as well as their degree of willingness to engage in this area of social work practice. Factors associated with their attitudes were measured through structured surveys completed by 102 social work students (N = 102) at a school of social work in the southeast. Results indicated that these social work students tended to have positive attitudes toward end-of-life care planning in general. Moreover, these attitudes were positively associated with preference for pain relief treatment, higher levels of comfort when discussing death, more emphasis on self-determination, and apprehension of conflicts of self-determination. The results of this study underscored the increased societal need for recognition of personal preferences in end-of-life care, higher levels of comfort when discussing death, and an increased commitment of social workers' to maintaining the ethical principle of the client's right to self-determination in end-of-life planning. While this is not surprising, it points to a continuing need to re-assess where the field stands in its preparation of social work professionals who will work closely with people who are dying and their families.

  12. Pediatric primary care involvement in end-of-life care for children

    PubMed Central

    Lindley, Lisa C.; Nageswaran, Savithri

    2016-01-01

    Objectives To examine the relationship between pediatric primary care involvement and hospice and home health care use at end of life. Methods California Medicaid data were used to estimate the relationship between pediatric primary care involvement and use of hospice and home health care using generalized estimating equations. Results Of the 2,037 children who died between 2007 and 2010, 11% used hospice and 23% home health. Among all children, primary care was not related to hospice use and was associated with home health use [usual source of care (OR=1.83, p<0.05), comprehensive care (OR=1.60, p<0.05), continuous care (low: OR=1.49, p<0.05; moderate: OR=2.57, p<0.05; high: OR=2.12, p<0.05)]. Primary care for children 15 to 20 years was related to hospice use [usual source of care (OR=4.06, p<0.05), continuous care (low: OR=4.92, p<0.05; moderate OR=4.09, p<0.05; high OR=3.92, p<0.05)]. Primary care for children under 5 years was associated with home health use [usual source of care (OR=2.59, p<0.05), comprehensive care (OR=2.49, p<0.05), continuous care (low: OR=2.22, p<0.05; moderate: OR=3.64, p<0.05; high: OR=3.62, p<0.05)]. For children 6 to 14 years, this association was seen with continuous care [moderate: (OR=2.38, p<0.05); high (OR=2.13, p<0.05)]. Home health for children 15 to 20 years was related to continuous care [moderate: (OR=2.32, p<0.05)]. Conclusions Primary care involvement affected hospice use among older age groups and home health use among younger age groups. These findings underscore the need for clinical knowledge about end-of-life care for children of all ages among primary care providers. PMID:26430133

  13. Roman Catholic doctrine guiding end-of-life care: a summary of the recent discourse.

    PubMed

    Bradley, Ciarán T

    2009-04-01

    Recent statements emanating from high-level church authorities have reignited discussion over the traditional Roman Catholic doctrine guiding end-of-life care. Although these statements concerned the specific issue of artificial nutrition and hydration for patients in a persistent vegetative state, they contain principles that might be applied to other life-prolonging interventions. This paper examines the origins of the Catholic moral tradition that guides end-of-life care. Included is a discussion of the "ordinary-extraordinary" distinction, as well as the Catholic definition of "euthanasia by omission." Further discussion focuses on those recent statements that have reaffirmed the Church's teaching regarding life-sustaining interventions. Although a source of some consternation, these statements should spark healthy discussion within Catholic health care facilities and among patients seeking advice about advance care planning within a Catholic framework. Moreover, the statements rightly reaffirm the Church's unwavering commitment to delivering compassionate palliative care.

  14. Hospice family members’ perceptions and experiences with end-of-life care in the nursing home

    PubMed Central

    Washington, Karla; Kruse, Robin L.; Albright, David L; Lewis, Alexandria; Demiris, George

    2014-01-01

    Objective Despite the fact that more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had two research questions; 1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared to family members of community dwelling hospice patients? 2) What are family members’ perceptions of and experiences with end-of-life care in the nursing home setting? Methods This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family member of hospice patients residing in the community. Results Outcome measures for family members of nursing home residents were compared (n=176) with family members of community dwelling hospice patients (n=267). The family members of nursing home residents reported higher quality of life however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting. Conclusion These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for

  15. Education in End-of-Life Care: What Do Experienced Professionals Find Important?

    PubMed

    Jors, Karin; Seibel, Katharina; Bardenheuer, Hubert; Buchheidt, Dieter; Mayer-Steinacker, Regine; Viehrig, Marén; Xander, Carola; Becker, Gerhild

    2016-06-01

    End-of-life care is an essential element of quality cancer care. Nevertheless, a majority of physicians and nurses working at cancer centers feel unprepared for this task. As part of a larger survey study, we investigated what suggestions experienced physicians and nurses have to improve education/training on end-of-life care. In an open question, participants were requested to suggest changes to the end-of-life curriculum for physicians and nurses. Answers to this question were content analyzed using the qualitative data analysis software MAXQDA. Physicians and nurses at 10 cancer centers throughout Baden-Wuerttemberg were surveyed. From the total 1131 survey participants, 675 (483 nurses, 167 physicians, 25 unknown) responded to the open question regarding suggestions for education/training in end-of-life care. Two main categories were inductively developed: (1) format (i.e., structure and method of teaching) and (2) content (i.e., knowledge and know-how required for care of the dying). Regarding format, both professional groups most often wished for more practical experiences with dying patients (e.g., internships at hospices). Regarding content, physicians and nurses most frequently requested (1) more basic information on palliative care, (2) increased skills training in communication, and (3) knowledge of how to appropriately care for patients' caregivers. The results of our analysis reflect already trained physicians' and nurses' interest in furthering their knowledge and skills to care for dying patients. The suggestions of experienced physicians and nurses should be integrated into the further development of palliative care curricula.

  16. To the bitter end: disparities in end-of-life care.

    PubMed

    Coustasse, Alberto; Quiroz, Theresa; Lurie, Sue G

    2008-01-01

    Although technological advancements have provided the means to sustain life and provide care regardless of whether the treatment is appropriate and compassionate given the condition of the patient, bioethical, legal, and moral concerns related to disparities in care still arise in the United States. These concerns call into question the necessity to continue life-sustaining or palliative care treatments when patients and/or families are faced with end-of-life decisions. This study will focus on various historical, clinical cultural, and ethical issues that have placed this dilemma into a controversial public spectrum, by using case studies retrieved from referenced literature, which illustrate disparities in care at the end of life.

  17. [Improving quality of end-of-life care. A possible and necessary change].

    PubMed

    Costantini, Massimo; Beccaro, Monica; Di Leo, Silvia

    2011-01-01

    This article describes the phases of development and assessment of a continuous quality improvement program focused on hospital end-of-life care for cancer patients. Although most patients would like to die at home, a high proportion still die in hospital. Many studies showed non appropriate end-of-life care for patients dying in hospital and their families. During the last years, a number of hospital end-of-life pathways have been developed but only partially assessed. Among the different care pathways the most structured and proficient seems to be the Liverpool Care Pathway for the dying patient (LCP). Although it is currently in use in over 20 countries, evidence for its effectiveness are weak. The Medical Research Council framework has been used for designing the process of implementation and assessment of the Italian LCP Program for cancer patients dying in hospital. In the first step (preclinical and phase I) results from literature review have been used to develop the Italian version of the Program. Subsequently, LCP-I Program has been piloted in the Medical and Respiratory Disease wards of the "Villa Scassi Hospital" of Genoa by a Palliative Care Team (phase I-II). The implementation process has been assessed with a mixed model. Focus groups, performed on samples of doctors and nurses before and after the implementation of the LCP-I, showed a perception of effectiveness of the Program, particularly in pain management and in communication with patients and their families. Quantitative analyses, performed on consecutive series of cancer deaths before and after the introduction of the Program, allowed to test process and outcomes measures for assessing the quality of end-of-life care. According to the results from the previous phases, a cluster randomised trial was designed with the aim of assessing the effectiveness of the LCP-I Program in improving quality of end-of-life care (phase III). This study is ongoing and final results will be available by 2012. In

  18. Nursing care at the end of life: a service learning course for undergraduate nursing students.

    PubMed

    Jeffers, Stephanie; Ferry, Dawn

    2014-01-01

    An elective course titled "Nursing Care at the End of Life" was designed for fourth-year nursing students in a baccalaureate nursing program. This course, taught by the authors, was designed to teach students about caring for the dying patient. Students were required to complete service learning with patients in a hospice or hospital setting. Students reported having a positive learning experience and gaining new knowledge and a deeper understanding of the needs of dying patients and their families.

  19. End-of-Life Practices in the Intensive Care Unit: The Importance of Geography, Religion, Religious Affiliation, and Culture

    PubMed Central

    Romain, Marc; Sprung, Charles L.

    2014-01-01

    End-of-life decisions are made daily in intensive care units worldwide. There are numerous factors affecting these decisions, including geographical location as well as religion and attitudes of caregivers, patients, and families. There is a spectrum of end-of-life care options from full continued care, withholding treatment, withdrawing treatment, and active life-ending procedures. PMID:24498510

  20. End-of-Life Care in Nursing Homes with Greater versus Less Palliative Care Knowledge and Practice

    PubMed Central

    Lima, Julie C.; Thompson, Sarah A.

    2015-01-01

    Abstract Background: Many older adults in nursing homes (NHs) lack palliative care (PC) access; but little is known about whether access to PC knowledge and practice (beyond hospice) impacts residents' care. Objective: The study objective was to evaluate how differing levels of NH PC knowledge and practice are associated with residents' end-of-life health care use. Methods: In 2009/10 we surveyed a stratified random sample of U.S. NHs and asked directors of nursing (DONs) PC knowledge and practice questions from Thompson and colleagues' validated PC Survey. This study includes 1981 NHs with complete survey responses and the 58,876 residents who died in these facilities between July 2009 and June 2010. Medicare resident assessment (minimum data set [MDS]) and claims data from July 2009 through June 2010 were used to determine outcomes and a NH's hospice use. Multivariate logistic regressions examined whether residing in NHs with higher PC scores was associated with documented six-month prognoses and receipt of aggressive treatments, including hospital and emergency room (ER) use in the last 30 days of life. Results: Controlling for NH hospice use, being in a NH with higher PC care knowledge scores was associated with residents having a higher likelihood of documented six-month prognoses and lower likelihoods of having feeding tubes, injections, restraints, suctioning, and end-of-life hospital and ER use. Being in a NH with higher PC practice scores was associated with a lower likelihood of having feeding tubes and ER visits. Conclusion: Policies and advocacy promoting the development of NH PC knowledge and practices could potentially improve care and reduce hospital and ER use. PMID:25774449

  1. End-of-life care in intensive care units: family routines and environmental factors.

    PubMed

    Fridh, Isabell; Forsberg, Anna; Bergbom, Ingegerd

    2007-03-01

    The purpose of this study was to describe family care routines and to explore environmental factors when patients die in Swedish intensive care units (ICUs). The main research questions were: what are the physical environmental circumstances and facilities when caring for patients in end-of-life and are there any routines or guidelines when caring for dying patients and their families? A questionnaire was sent to 79 eligible Swedish ICUs in December 2003, addressed to the unit managers. The response rate was 94% (n = 74 units). The findings show that, despite recommendations highlighting the importance of privacy for dying ICU patients and their families, only 11% of the respondents stated that patients never died in shared rooms in their ICU. If a patient dies in a shared room, nurses strive to ensure a dignified goodbye by moving the body to an empty room or to one specially designated for this purpose. The majority (76%) of the units had waiting rooms within the ICU. The study also revealed that there is a need for improvements in the follow-up routines for bereaved families. Many units reported (51%) that they often or almost always offer a follow-up visit, although in most cases the bereaved family had to initiate the follow-up by contacting the ICU. Guidelines in the area of end-of-life care were used by 25% of the ICUs. Further research is necessary to acquire a deeper knowledge of the circumstances under which patients die in ICUs and what impact the ICU environment has on bereaved families.

  2. Managing the emotional aspects of end of life care for children and young people.

    PubMed

    Pearson, Helen

    2010-09-01

    Caring for a child at the end of life stage is one of the greatest challenges a nurse can encounter in practice. The way professionals help support, maintain and give comfort to the child and his or her family helps shape the experience the young patient is about to face. Whatever the stage of your nursing career it is likely you will provide end of life care to a child or young person and their family. This article is designed to help enable professionals to cope emotionally and provide the best quality of care in an emotionally charged situation. The information contained may be used as a guidance tool through is challenging and difficult time.

  3. Criminal prosecutions of physicians providing palliative or end-of-life care.

    PubMed

    Kollas, Chad D; Boyer-Kollas, Beth; Kollas, James W

    2008-03-01

    Although medical malpractice suits commonly occur in medical practice, few physicians experienced criminal prosecution related to adverse clinical outcomes before 1990. Criminal prosecutions of physicians increased in frequency early in that decade, however, including a handful of cases involving palliative or end-of-life care. Reviews published around the end of the 1990s examined those prosecutions, listing causative factors and offering recommendations to prevent further cases. In this paper, we provide an updated review of criminal prosecutions of physicians providing palliative or end-of-life care, presenting three cases that occurred after 1998. We summarize these newer cases' chronologies and outcomes, comparing them to cases described in past reviews. Our analysis suggests that important factors not described in earlier reviews, especially conflicting views of the standard of care in hospice and palliative medicine, contributed to the development of these prosecutions.

  4. Legal aspects of end-of-life decision policies in health care institutions.

    PubMed

    Tack, Sylvie

    2009-12-01

    Nowadays, health care institutions develop policies on how to deal with medical decisions concerning the patients' end-of-life stage (hereafter: "end-of-life decision policies" or "ELD-policies"). This evolution is not only noticeable in hospitals, but also in nursing homes, residential facilities for the disabled and home care services. However, these policies raise several legal issues. The developing and implementing of institutional ELD-policies are legitimated as such and imposing additional criteria or limitations on patients or physicians are allowed if all patients' rights are respected. Due to many differences in form and content, their legal value is difficult to define. Nevertheless, institutional ELD-policies are only enforceable on physicians after incorporation into a binding agreement and without violation of their (deontological and/or legal) right to professional autonomy. Patients (or their legal representatives) can never obligate physicians or health care institutions to comply with institutional ELD-policies, unless enforceable patients' rights are violated.

  5. Racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care.

    PubMed

    Duffy, Sonia A; Jackson, Frances C; Schim, Stephanie M; Ronis, David L; Fowler, Karen E

    2006-01-01

    This study investigated racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care. Ten focus groups and a follow-up survey were conducted to obtain in-depth information on end-of-life preferences across five racial/ethnic groups in Michigan stratified by sex. There were 73 focus group participants, including Arab Muslims, Arab Christians, Hispanics, blacks, and whites. The mean age+/-standard deviation was 67+/-8.5 (range 50-83). A focus group screener was used to recruit participants. A moderator discussion guide was used to guide the focus groups. A take-home questionnaire asked about demographic information and end-of-life issues. Arab Americans were in favor of making peace on earth and were against assisted suicide, extending life artificially, nursing homes, and telling the patient "bad news." Hispanic and black women were against assisted suicide and in favor of extending life, whereas the men in these groups felt the opposite. Hispanic women spoke of not wanting a feeding tube and would consider alternative medicine. Blacks were least opposed to nursing homes. For whites, it was important to have choices. When asked about discrimination related to end-of-life care, Muslim women spoke of cultural barriers, blacks spoke of inequities in the past, and whites spoke of age discrimination and abandonment when dying. As the population becomes more diverse and continues to age, it will be important to provide culturally and sex-sensitive end-of-life interventions to increase patient/family satisfaction and allocate resources appropriately.

  6. Innovation can improve and expand aspects of end-of-life care in low- and middle-income countries.

    PubMed

    Steedman, Mark R; Hughes-Hallett, Thomas; Knaul, Felicia Marie; Knuth, Alexander; Shamieh, Omar; Darzi, Ara

    2014-09-01

    Provision for end-of-life care around the world is widely variable and often poor, which leads to millions of deaths each year among people without access to essential aspects of care. However, some low- and middle-income countries have improved specific aspects of end-of-life care using innovative strategies and approaches such as international partnerships, community-based programs, and philanthropic initiatives. This article reviews the state of current global end-of-life care and examines how innovation has improved end-of-life care in Nigeria, Uganda, India, Bangladesh, Myanmar, and Jordan. Specifically, we examine how opioids have been made more available for the treatment of pain, and how training and education programs have expanded the provision of care to the dying population. Finally, we recommend actions that policy makers and individuals can take to improve end-of-life care, regardless of the income level in a country.

  7. Barriers to good end-of-life care: a physician survey.

    PubMed

    Kayashima, R; Braun, K L

    2001-02-01

    Surveyed about barriers to good end-of-life care were 804 Hawaii physicians in specialties most likely to care for dying patients. Responses were received by 367 (46%). The majority attended terminally ill patients within the past year and felt that the physician should be the first to tell a patient that he/she is dying. Yet 86% identified barriers to talking about end-of-life preferences and 94% identified barriers to providing good end-of-life care. Perceived as major barriers were family conflict about the best course of action, patient/family discomfort with or fear of death, and cultural/religious beliefs of the patient or family. Since relatively few respondents supported the concepts of physician-assisted suicide (32%) or physician-assisted death (18%), the alternative is for physicians to join with other concerned entities to help overcome the attitudinal, behavioral, educational, and economic barriers to providing appropriate, humane, and compassionate care for the dying.

  8. End-of-life care policy: An integrated care plan for the dying

    PubMed Central

    Myatra, Sheila Nainan; Salins, Naveen; Iyer, Shivakumar; Macaden, Stanley C.; Divatia, Jigeeshu V.; Muckaden, Maryann; Kulkarni, Priyadarshini; Simha, Srinagesh; Mani, Raj Kumar

    2014-01-01

    Purpose: The purpose was to develop an end-of-life care (EOLC) policy for patients who are dying with an advanced life limiting illness and to develop practical procedural guidelines for limiting inappropriate therapeutic medical interventions and improve the quality of care of the dying within an ethical framework and through a professional and family/patient consensus process. Evidence: The Indian Society of Critical Care Medicine (ISCCM) published its first guidelines on EOLC in 2005 [1] which was later revised in 2012.[2] Since these publications, there has been an exponential increase in empirical information and discussion on the subject. The literature reviewed observational studies, surveys, randomized controlled studies, as well as guidelines and recommendations, for education and quality improvement published across the world. The search terms were: EOLC; do not resuscitate directives; withdrawal and withholding; intensive care; terminal care; medical futility; ethical issues; palliative care; EOLC in India; cultural variations. Indian Association of Palliative Care (IAPC) also recently published its consensus position statement on EOLC policy for the dying.[3] Method: An expert committee of members of the ISCCM and IAPC was formed to make a joint EOLC policy for the dying patients. Proposals from the chair were discussed, debated, and recommendations were formulated through a consensus process. The members extensively reviewed national and international established ethical principles and current procedural practices. This joint EOLC policy has incorporated the sociocultural, ethical, and legal perspectives, while taking into account the needs and situation unique to India. PMID:25249748

  9. Collaborative working in end-of-life care: developing a guide for health and social care professionals.

    PubMed

    Alsop, Anne

    2010-03-01

    This article describes a project to develop collaborative working between palliative care nurse specialists and community matrons for patients with a non-cancer diagnosis. Pathways to clarify decision-making in end-of-life care were created as part of the project and were subsequently developed into a guide for use by health or social care professionals caring for any patient, irrespective of diagnosis. The guide is designed to facilitate best practice in end-of-life care, by identifying the key questions which need to be addressed and the appropriate responses at different stages of the patient journey. The project was supported by the Help the Hospices' Care Beyond Cancer programme, funded by the St James's Place Foundation. The programme is designed to identify models of effective, replicable end-of-life care provision for patients with a non-cancer diagnosis, and to widen access to specialist palliative care.

  10. Preparing the Ground: Contributions of the Preclinical Years to Medical Education for Care Near the End of Life.

    ERIC Educational Resources Information Center

    Barnard, David; Quill, Timothy; Hafferty, Frederic W.; Arnold, Robbert; Plumb, James; Bulger, Roger; Field, Marilyn

    1999-01-01

    The Working Group on the Pre-Clinical Years of the 1997 National Consensus Conference on Medical Education for Care Near the End of Life identifies promising settings and suggests how they might be used for maximum benefit in end-of-life education. Basic-care competencies are in five domains: psychological/social/cultural/spiritual issues;…

  11. End-of-life care in a cardiology department: have we improved?

    PubMed Central

    Ruiz-Garcia, Juan; Diez-Villanueva, Pablo; Ayesta, Ana; Bruña, Vanessa; Figueiras-Graillet, Lourdes M; Gallego-Parra, Laura; Fernández-Avilés, Francisco; Martínez-Sellés, Manuel

    2016-01-01

    Background End-of-life care is not usually a priority in cardiology departments. We sought to evaluate the changes in end-of-life care after the introduction of a do-not-resuscitate (DNR) order protocol. Methods & Results Retrospective analysis of all deaths in a cardiology department in two periods, before and after the introduction of the protocol. Comparison of demographic characteristics, use of DNR orders, and end-of-life care issues between both periods, according to the presence in the second period of the new DNR sheet (Group A), a conventional DNR order (Group B) or the absence of any DNR order (Group C). The number of deaths was similar in both periods (n = 198 vs. n = 197). The rate of patients dying with a DNR order increased significantly (57.1% vs. 68.5%; P = 0.02). Only 4% of patients in both periods were aware of the decision taken about cardiopulmonary resuscitation. Patients in Group A received the DNR order one day earlier, and 24.5% received it within the first 24 h of admission (vs. 2.6% in the first period; P < 0.001). All patients in Group A with an implantable cardioverter defibrillator (ICD) had shock therapies deactivated (vs. 25.0% in the first period; P = 0.02). Conclusions The introduction of a DNR order protocol may improve end-of-life care in cardiac patients by increasing the use and shortening the time of registration of DNR orders. It may also contribute to increase ICD deactivation in patients with these orders in place. However, the introduction of the sheet in late stages of the disease failed to improve patient participation. PMID:27605939

  12. Parent's Perspectives on the End-of-life Care of their Child with Cancer: Indian Perspective

    PubMed Central

    Latha, Sneha Magatha; Scott, Julius Xavier; Kumar, Satish; Kumar, Suresh M; Subramanian, Lalitha; Rajendran, Aruna

    2016-01-01

    Context: Parents report that end-of-life decisions are the most difficult treatment-related decisions that they face during their child cancer experience. Research from the parent's perspective of the quality of end-of-life care of their cancer children is scarce, particularly in developing countries like India. Aims: This study aimed to identify the symptoms (medical/social/emotional) that most concerned parents at the end-of-life care of their cancer child and to identify the strategies parents found to be helpful during this period. Settings and Design: We wanted to conduct this to focus on the parents perspectives on their cancer child's end-of-life care and to address the issues that could contribute to the comfort of the families witnessing their child's suffering. Materials and Methods: The study was conducted at Sri Ramachandra University, Chennai, a Tertiary Care Pediatric Hemato Oncology Unit. Parents who lost their child to cancer, treated in our institution were interviewed with a validated prepared questionnaire. Statistical analysis was performed using SAS statistical software package. Results: Toward death, dullness (30%), irritability (30%), and withdrawn from surroundings (10%) were the most common symptoms encountered. About 30% of the children had fear to be alone. About 50% of the children had the fear of death. Pain, fatigue, loss of appetite were the main distressful symptoms that these children suffered from parents’ perspective. Though the parents accepted that the child was treated for these symptoms, the symptom relief was seldom successful. Conclusion: The conclusion of the study was that at the end of their child's life, parents value obtaining adequate information and communication, being physically present with the child, preferred adequate pain management, social support, and empathic relationships by the health staff members. PMID:27559262

  13. An Exploratory Study of Spiritual Care at the End of Life

    PubMed Central

    Daaleman, Timothy P.; Usher, Barbara M.; Williams, Sharon W.; Rawlings, Jim; Hanson, Laura C.

    2008-01-01

    PURPOSE Although spiritual care is a core element of palliative care, it remains unclear how this care is perceived and delivered at the end of life. We explored how clinicians and other health care workers understand and view spiritual care provided to dying patients and their family members. METHODS Our study was based on qualitative research using key informant interviews and editing analysis with 12 clinicians and other health care workers nominated as spiritual caregivers by dying patients and their family members. RESULTS Being present was a predominant theme, marked by physical proximity and intentionality, or the deliberate ideation and purposeful action of providing care that went beyond medical treatment. Opening eyes was the process by which caregivers became aware of their patient’s life course and the individualized experience of their patient’s current illness. Participants also described another course of action, which we termed cocreating, that was a mutual and fluid activity between patients, family members, and caregivers. Cocreating began with an affirmation of the patient’s life experience and led to the generation of a wholistic care plan that focused on maintaining the patient’s humanity and dignity. Time was both a facilitator and inhibitor of effective spiritual care. CONCLUSIONS Clinicians and other health care workers consider spiritual care at the end of life as a series of highly fluid interpersonal processes in the context of mutually recognized human values and experiences, rather than a set of prescribed and proscribed roles. PMID:18779544

  14. Creating a Sacred Space in the Intensive Care Unit at the End of Life.

    PubMed

    Fournier, Ann L

    Improving care at the end of life is a health priority. At least one-third of deaths in the United States occur in the hospital; nearly half of the Americans who die in the hospital will have spent time in the intensive care unit during the last 3 days of life. Critically ill patients and their families identify significant unmet spiritual, environmental, and communication needs. Although the Society of Critical Care Medicine recommends that the spiritual needs of critically ill patients be addressed by the health care team and be incorporated in patients' plans of care, spiritual concerns are infrequently addressed during goals-of-care discussions. The American Association of Critical-Care Nurses' Synergy Model recognizes the central importance of spirituality to the provision of patient-centered care. Furthermore, the model highlights the value of the relationship between the patient and the nurse to a healing environment. The privileged connection between patients and nurses, foundational to the creation of a healing environment, may be understood as a sacred space. Critical care nurses are uniquely positioned to improve end-of-life care by focusing on the spiritual, environmental, and communication needs of their patients through the creation of a third space in the intensive care unit, a sacred space.

  15. Existential loneliness and end-of-life care: a systematic review.

    PubMed

    Ettema, Eric J; Derksen, Louise D; van Leeuwen, Evert

    2010-04-01

    Patients with a life-threatening illness can be confronted with various types of loneliness, one of which is existential loneliness (EL). Since the experience of EL is extremely disruptive, the issue of EL is relevant for the practice of end-of-life care. Still, the literature on EL has generated little discussion and empirical substantiation and has never been systematically reviewed. In order to systematically review the literature, we (1) identified the existential loneliness literature; (2) established an organising framework for the review; (3) conducted a conceptual analysis of existential loneliness; and (4) discussed its relevance for end-of-life care. We found that the EL concept is profoundly unclear. Distinguishing between three dimensions of EL-as a condition, as an experience, and as a process of inner growth-leads to some conceptual clarification. Analysis of these dimensions on the basis of their respective key notions-everpresent, feeling, defence; death, awareness, difficult communication; and inner growth, giving meaning, authenticity-further clarifies the concept. Although none of the key notions are unambiguous, they may function as a starting point for the development of care strategies on EL at the end of life.

  16. Existential loneliness and end-of-life care: A systematic review

    PubMed Central

    Derksen, Louise D.; van Leeuwen, Evert

    2010-01-01

    Patients with a life-threatening illness can be confronted with various types of loneliness, one of which is existential loneliness (EL). Since the experience of EL is extremely disruptive, the issue of EL is relevant for the practice of end-of-life care. Still, the literature on EL has generated little discussion and empirical substantiation and has never been systematically reviewed. In order to systematically review the literature, we (1) identified the existential loneliness literature; (2) established an organising framework for the review; (3) conducted a conceptual analysis of existential loneliness; and (4) discussed its relevance for end-of-life care. We found that the EL concept is profoundly unclear. Distinguishing between three dimensions of EL—as a condition, as an experience, and as a process of inner growth—leads to some conceptual clarification. Analysis of these dimensions on the basis of their respective key notions—everpresent, feeling, defence; death, awareness, difficult communication; and inner growth, giving meaning, authenticity—further clarifies the concept. Although none of the key notions are unambiguous, they may function as a starting point for the development of care strategies on EL at the end of life. PMID:20440564

  17. Efficacy of the end-of-life nursing care continuing education program for nurses in general wards in Japan.

    PubMed

    Yoshioka, Saori; Moriyama, Michiko; Ohno, Yumiko

    2014-08-01

    This study aimed to examine effectiveness of the End-of-life nursing care continuing education program for general ward nurses. A nonrandomized, before-after trial was conducted. The program was implemented for 25 nurses. The contents of the program consisted of the family assessment, general symptom management and practical use of theories and models regarding end-of-life nursing care. The primary outcome, implementation ability of end-of-life nursing care, was significantly improved after the program; improvements continued even at 2 months after. Similar results were obtained for nurses' confidence and knowledge concerning end-of-life nursing care. As for attitude toward end-of-life care, participants' scores were further elevated after the program. The participants rated the usefulness of the program as high. The effectiveness of the program was suggested from these results. In the future, this program should be widely used for in-service training.

  18. Exploring Health Care Providers' Views About Initiating End-of-Life Care Communication.

    PubMed

    Nedjat-Haiem, Frances R; Carrion, Iraida V; Gonzalez, Krystana; Ell, Kathleen; Thompson, Beti; Mishra, Shiraz I

    2016-01-01

    Numerous factors impede effective and timely end-of-life (EOL) care communication. These factors include delays in communication until patients are seriously ill and/or close to death. Gaps in patient-provider communication negatively affect advance care planning and limit referrals to palliative and hospice care. Confusion about the roles of various health care providers also limits communication, especially when providers do not coordinate care with other health care providers in various disciplines. Although providers receive education regarding EOL communication and care coordination, little is known about the roles of all health care providers, including nonphysician support staff working with physicians to discuss the possibility of dying and help patients prepare for death. This study explores the perspectives of physicians, nurses, social workers, and chaplains on engaging seriously ill patients and families in EOL care communication. Qualitative data were from 79 (medical and nonmedical) providers practicing at 2 medical centers in Central Los Angeles. Three themes that describe providers' perceptions of their roles and responsibility in talking with seriously ill patients emerged: (1) providers' roles for engaging in EOL discussions, (2) responsibility of physicians for initiating and leading discussions, and (3) need for team co-management patient care. Providers highlighted the importance of beginning discussions early by having physicians lead them, specifically due to their medical training and need to clarify medical information regarding patients' prognosis. Although physicians are a vital part of leading EOL communication, and are at the center of communication of medical information, an interdisciplinary approach that involves nurses, social workers, and chaplains could significantly improve patient care.

  19. [End of life conflicts in palliative care: a systematic review of the literature].

    PubMed

    Mpinga, Emmanuel Kabengele; Chastonay, Philippe; Rapin, Charles-Henri

    2006-09-01

    To evaluate the extent and the quality of the research related to End of life conflicts in palliative care from 1995 to 2004. Accessible Literature of several electronic data bases (BDSP, Cinhal, Cochrane, Francis, Medline, Psychinfo, Saphir, Scopus and Web of science) as well as the grey literature. Studies published in French and English between 1995 and 2004 reporting end of life conflicts, tensions, disagreements, disputes in the context of palliative care. One hundred and two studies were included (87.2% published in English, 12.8% in French). Study designs include revues 27.4%), cross-sections 18.6% and case studies 18.6%. Reported conflicts are related to ethical issues 26.2%, to care 19.1%, to tensions between professionals and patients or families 11.1%, to team experiences 9%. Six studies 5.8% give prevalence figures of conflicts. Half of the studies 51.3% identify possible causes of conflicts: communication issues, euthanasia and suicide assistance demands, autonomy of patients, non respect of advance directives, cultural differences. Ten studies 9.8% identify specifically some effects of the conflicts: moral distress of patients; stress, burn out and guilt of health professionals; lack of trust between doctors and patients or families. Conflicts are mainly resolved through mediation and ethical discussions. Research data on end of life conflicts is scarce at all levels (quantity, quality, methods, social impact, and epistemology). A better understanding of end of life conflict might foster a more adequate management of difficult situations and ultimately a more peaceful death of patients, mourning of families and every day work of health professionals

  20. [Nursing and the humanization of the end- of-life care within healthcare systems].

    PubMed

    Gómez Arca, Marina

    2014-01-01

    The reflection upon the humanisation of the end-of-life process within healthcare systems and the implication of healthcare professionals is the main objective of this article. The evolution of the model of care and nurses leadership role at the end-of-life process is evaluated. This analysis starts from the first European references regarding advance wills, made in 1997 at the Oviedo Convention, until the introduction of the idea of advance directives incorporated into Spanish law in 2002. It sets the concept of advance planning in health-related decisions, which establishes a process of voluntary dialogue where every person can clarify values, preferences and wishes regarding the final moments of life, with the support of the healthcare professionals.

  1. Differences in Level of Care at the End of Life According to Race

    PubMed Central

    Johnson, Rebecca W.; Newby, L. Kristin; Granger, Christopher B.; Cook, Wendy A.; Peterson, Eric; Echols, Melvin; Bride, Wanda; Granger, Bradi B.

    2013-01-01

    Background Tailoring care for patients and their families at the end-of-life is an important goal. This study examined factors associated with patient choices for level of care at the end of life. Methods Demographic data and level of care (full code, do not resuscitate, or withdrawal of life support) were collected on 1072 patients who died from January 1998 to June 2006 on a cardiac care unit. Logistic regression was used to identify factors associated with level of care. Results Of 15,402 patients admitted during the study, 1072 died, comprising the study sample. Median age of blacks was 64 years (IQR, 50, 74) and whites, 70 years (IQR, 62, 78). At the time of death the level of care differed significantly in blacks versus whites. 41.8% (n = 112) of blacks versus 26.7% (n = 194) of whites chose full code (p <.0001); 37.3% (n = 96) of blacks versus 43.9% (n = 317) whites chose DNR (p = .026); and 20.9% (n=54) of blacks versus 29.3% (n=210) of whites chose withdrawal of life support (p = .005). After controlling for age, sex, diagnosis, length of intensive care stay, and length of hospital stay, blacks were more likely than whites to choose full code status at the time of death (OR 1.91 [95% CI, 2.63 – 1.39], p <0.0001). Conclusions Blacks are 1.9 times as likely as others to choose full code at time of death. These results suggest the need to acknowledge cultural differences when providing end of life care. PMID:20595215

  2. Distancing sedation in end-of-life care from physician-assisted suicide and euthanasia.

    PubMed

    Soh, Tze Ling Gwendoline Beatrice; Krishna, Lalit Kumar Radha; Sim, Shin Wei; Yee, Alethea Chung Peng

    2016-05-01

    Lipuma equates continuous sedation until death (CSD) to physician-assisted suicide/euthanasia (PAS/E) based on the premise that iatrogenic unconsciousness negates social function and, thus, personhood, leaving a patient effectively 'dead'. Others have extrapolated upon this position further, to suggest that any use of sedation and/or opioids at the end of life would be analogous to CSD and thus tantamount to PAS/E. These posits sit diametrically opposite to standard end-of-life care practices. This paper will refute Lipuma's position and the posits borne from it. We first show that prevailing end-of-life care guidelines require proportional and monitored use of sedatives and/or opioids to attenuate fears that the use of such treatment could hasten death. These guidelines also classify CSD as a last resort treatment, employed only when symptoms prove intractable, and not amenable to all standard treatment options. Furthermore, CSD is applied only when deemed appropriate by a multidisciplinary palliative medicine team. We also show that empirical data based on local views of personhood will discount concerns that iatrogenic unconsciousness is tantamount to a loss of personhood and death.

  3. Distancing sedation in end-of-life care from physician-assisted suicide and euthanasia

    PubMed Central

    Soh, Tze Ling Gwendoline Beatrice; Krishna, Lalit Kumar Radha; Sim, Shin Wei; Yee, Alethea Chung Peng

    2016-01-01

    Lipuma equates continuous sedation until death (CSD) to physician-assisted suicide/euthanasia (PAS/E) based on the premise that iatrogenic unconsciousness negates social function and, thus, personhood, leaving a patient effectively ‘dead’. Others have extrapolated upon this position further, to suggest that any use of sedation and/or opioids at the end of life would be analogous to CSD and thus tantamount to PAS/E. These posits sit diametrically opposite to standard end-of-life care practices. This paper will refute Lipuma’s position and the posits borne from it. We first show that prevailing end-of-life care guidelines require proportional and monitored use of sedatives and/or opioids to attenuate fears that the use of such treatment could hasten death. These guidelines also classify CSD as a last resort treatment, employed only when symptoms prove intractable, and not amenable to all standard treatment options. Furthermore, CSD is applied only when deemed appropriate by a multidisciplinary palliative medicine team. We also show that empirical data based on local views of personhood will discount concerns that iatrogenic unconsciousness is tantamount to a loss of personhood and death. PMID:27211055

  4. Practice improvement as a result of an end of life care programme for care homes.

    PubMed

    Springett, Angela

    2017-03-31

    This article explores practice outcomes from a Six Steps+ programme for end of life care (EoLC) delivered in care homes in the south of England. The education programme aims to increase staff's knowledge, skills and confidence to counter-balance their anxiety about EoLC. The Six Steps+ programme promotes a culture of high quality, compassionate, person-centred and dignified holistic care to meet the needs of residents who may have increasing complex requirements throughout their last year or more of life. Through integrated working and a reduction in avoidable hospital admissions, residents are enabled to die in their place of choice where possible. Case studies show that participating in the Six Steps+ programme increases care home staff's knowledge, skills and confidence and enhances the quality of EoLC for residents. With the cost of the education and support required essentially covered by six avoided hospital admissions throughout the one-year course, the Six Steps+ programme is an attractive and cost-effective approach to improving EoLC.

  5. Palliative Care and the Humanities: Centralizing the Patient at the End of Life

    PubMed Central

    Franke, Richard J.

    2016-01-01

    Palliative care is a quickly growing facet of modern medicine. While scientific advancements have broken new ground for the possibilities of end-of-life care, sensitive treatment of the patient as an individual has lagged behind and has frequently led to an unsatisfactory experience for patients, families, and the medical community at large. This essay argues that centralizing patients during the terminal phases of treatment by using humanistic perspectives has the potential to bring new meaning and improved effectiveness to patients and physicians alike. PMID:27505023

  6. End of Life Care and the Chaplain's Role on the Medical Team.

    PubMed

    Lahaj, Mary

    2011-12-01

    This article depicts a chaplain's role in various learning and teaching situations, including end-of-life care and cases requiring cultural competency and gender preferences. The cases exemplify and underscore the difference between the role of a chaplain and the imam, as well as the necessity to have imams and both male and female chaplains in the hospital. It also describes the training, education, pastoral formation, pastoral identity, and roots of pastoral care in the Islamic tradition. The article explores the challenges of this new profession and advocates having a Muslim chaplain available in the hospital to serve Muslim patients, families, and the non-Muslim staff.

  7. Inequalities in End-of-Life Care for Colorectal Cancer Patients in Nova Scotia, Canada

    PubMed Central

    Asada, Yukiko; Burge, Fred; Johnston, Grace W.; Urquhart, Robin

    2013-01-01

    Access to high-quality end-of-life (EOL) care is critical for all those with incurable cancer. The objective of this study was to examine inequalities in access to, and quality of, EOL care by assessing registration in a palliative care program, emergency room visits in the last 30 days of life, and location of death among individuals who died of colorectal cancer in Nova Scotia, Canada, between 2001 and 2008. We used population-based linked administrative data and performed multivariate logistic regression models to assess the association between socio-economic, geographic, and demographic factors and outcomes related to access to, and quality of, EOL care (n=1,201). This study demonstrates that although access to, and quality of, EOL care appears to have improved, there remain significant inequalities throughout the population. Of primary concern is the variation in access to, and quality of, EOL care based on geographic location of residence and patient age. PMID:22860381

  8. Dire deadlines: coping with dysfunctional family dynamics in an end-of-life care setting.

    PubMed

    Holst, Lone; Lundgren, Maren; Olsen, Lutte; Ishøy, Torben

    2009-01-01

    Working in a hospice and being able to focus on individualized, specialized end-of-life care is a privilege for the hospice staff member. However, it also presents the hospice staff with unique challenges. This descriptive study is based upon two cases from an end-of-life care setting in Denmark, where dysfunctional family dynamics presented added challenges to the staff members in their efforts to provide optimal palliative care. The hospice triad--the patient, the staff member and the family member--forms the basis for communication and intervention in a hospice. Higher expectations and demands of younger, more well-informed patients and family members challenge hospice staff in terms of information and communication when planning for care. The inherent risk factors of working with patients in the terminal phase of life become a focal point in the prevention of the development of compassion fatigue among staff members. A series of coping strategies to more optimally manage dysfunctional families in a setting where time is of the essence are then presented in an effort to empower the hospice team, to prevent splitting among staff members, and to improve quality of care.

  9. Effect of end of life education on medical students' and health care workers' death attitude.

    PubMed

    Hegedus, K; Zana, A; Szabó, G

    2008-04-01

    One of the goals of education in end of life care is to make communication more open by exploring critical issues related to fear of dying and death in order to reduce anxiety and improve an individual's attitude to dying patients. The aim of our research was to evaluate the effects of courses for health care workers and medical students in care at the end of life. One hundred and twenty-seven health care professionals and 41 undergraduate medical students completed the Multidimensional Fear of Death Scale (MFODS) on the first and last day of the course. The most significant factors of fear of death are: Fear for Significant Others, Fear of the Dying Process and Fear of the Unknown. Overall fear of death scores were reduced as an effect of the courses. Changes in the components and level of fear of death are influenced by the participants' gender, age and profession. Improvement was evident in the attitudes to dying patients in both groups, which was related to an increase in knowledge of high-quality care of dying patients.

  10. Communication as care at end of life: an emerging issue from an exploratory action research study of renal end-of-life care for ethnic minorities in the UK.

    PubMed

    Wilkinson, Emma; Randhawa, Gurch; Brown, Edwina A; Da Silva Gane, Maria; Stoves, John; Warwick, Graham; Akhtar, Tahira; Magee, Regina; Sharman, Sue; Farrington, Ken

    2014-09-01

    South Asian people have a higher risk of developing kidney disease, are disproportionately represented in the patient population requiring renal replacement therapy and wait longer to receive a kidney transplant, compared with white Europeans. As a result, there is a demand for end-of-life care, which meets the needs of this group of patients. Providing end-of-life care to patients from different cultures is a challenge for renal services as there can be barriers to communication in the form of language, delegated decision-making within families and reluctance to discuss death. To explore end-of-life care for South Asians with kidney disease, 16 interviews with patients and 14 focus groups with care providers were conducted at four research sites in the UK with large South Asian populations. Using an action research design the data were analysed thematically and fed back to inform the research in a cyclical manner. If patients are not fully aware of their condition or of what end-of-life care is, it is less likely that they will be able to be involved in decision-making about their care and this is compounded where there are communication barriers. Variations in care provider awareness and experience of providing end-of-life care to South Asian patients, in turn, contributes to lack of patient awareness of end-of-life care. Communication as care at the end of life should be explored further. Researching the South Asian patient experience of end of life highlights many relevant and generalisable issues.

  11. Health care professionals’ comprehension of the legal status of end-of-life practices in Quebec

    PubMed Central

    Marcoux, Isabelle; Boivin, Antoine; Arsenault, Claude; Toupin, Mélanie; Youssef, Joseph

    2015-01-01

    Abstract Objective To determine health care professionals’ understanding of the current legal status of different end-of-life practices and their future legal status if medical aid in dying were legalized, and to identify factors associated with misunderstanding surrounding the current legal status. Design Cross-sectional survey using 6 clinical scenarios developed from a validated European questionnaire and from a validated classification of end-of-life practices. Setting Quebec. Participants Health care professionals (physicians and nurses). Main outcome measures Perceptions of the current legal status of the given scenarios and whether or not the practices would be authorized in the event that medical aid in dying were legalized. Results Among the respondents (n = 271, response rate 88.0%), more than 98% knew that the administration or prescription of lethal medication was currently illegal. However, 45.8% wrongly thought that it was not permitted to withdraw a potentially life-prolonging treatment at the patient’s request, and this misconception was more common among nurses and professionals who had received their diplomas longer ago. Only 39.5% believed that, in the event that medical aid in dying were legalized, the use of lethal medication would be permitted at the patient’s request, and 34.6% believed they would be able to give such medication to an incompetent patient upon a relative’s request. Conclusion Health care professionals knew which medical practices were illegal, but some wrongly believed that current permitted practices were not legal. There were various interpretations of what would or would not be allowed if medical aid in dying were legalized. Education on the clinical implications of end-of-life practice legislation should be promoted. PMID:26052600

  12. Promoting health and wellbeing at the end of life: the contribution of care pathways.

    PubMed

    Allen, Michael; Watts, Tessa

    2012-07-01

    Enhancing end-of-life care (EoLC) is a core component of international governments' health policies. Across the globe, nurses make significant contributions to EoLC and, at this delicate time, have the power to positively influence the health and wellbeing of those facing death. Indeed, health promotion is a core component of the nurse's role. Originating in the UK, EoLC pathways have been adopted around the world. Their broad aim is to optimise the quality of the dying process, enabling people to 'die well' across care settings. This paper examines EoLC pathways in terms of promoting health and wellbeing in this discrete stage of the dying trajectory. Concepts of health and health promotion are described briefly and the idea of health-promoting palliative care and its association with a good death examined. The ensuing discussion relates to two EoLC documents. While acknowledging that much has been achieved it is argued that, despite the potential for promoting health and wellbeing, a professionally led, biomedical approach predominates, and in terms of promoting health and wellbeing at the end of life there is a pressing need for proactive advance care planning at an earlier point in the illness trajectory.

  13. Knowledge of palliative and end-of-life care by student registered nurse anesthetists.

    PubMed

    Callahan, Margaret Faut; Breakwell, Susan; Suhayda, Rosemarie

    2011-08-01

    As part of a 5-year study funded by the National Cancer Institute, all graduate nursing students, including student registered nurse anesthetists (SRNAs) participated in a 2-credit-hour course called Interdisciplinary Palliative Care. Medical and health science students also participated in the course, with more than 800 students completing the course to date. The sample consisted of 62 master's-level students enrolled in either the first or second year of the nurse anesthesia program. A pretest-posttest design was used to determine changes in palliative care knowledge and perceived effectiveness in palliative care skills. There was an overall improvement in knowledge and attitudes related to course content. Students reported that, through the development of new knowledge, they felt better able to care for and advocate for their patients. Further research is needed into the appropriate roles that Certified Registered Nurse Anesthetists (CRNAs) can play in palliative and end-of-life care.

  14. The importance of patient-provider communication in end-of-life care.

    PubMed

    Rice, Timothy R; Dobry, Yuriy; Novakovic, Vladan; Appel, Jacob M

    2012-12-01

    Successful formulation and implementation of end-of-life care requires ongoing communication with the patient. When patients, for reasons of general medical or psychiatric illness, fail to verbally communicate, providers must be receptive to messages conveyed through alternate avenues of communication. We present the narrative of a man with schizophrenia who wished to forgo hemodialysis as a study in the ethical importance of attention to nonverbal communication. A multilayered understanding of the patient, as may be provided by both behavioral and motivational models, can inform the provider's ability to receive, process, and represent communicated content to the patient or his or her surrogate decision-maker.

  15. End of Life Issues

    MedlinePlus

    ... difficult. But by deciding what end-of-life care best suits your needs when you are healthy, ... making choices about the following: The goals of care (for example, whether to use certain medicines during ...

  16. Health Care Professionals’ Understandings of Cross-Cultural Interaction in End-of-Life Care: A Focus Group Study

    PubMed Central

    Torres, Sandra; Ågård, Pernilla

    2016-01-01

    Objective The academic debate on cross-cultural interaction within the context of end-of-life care takes for granted that this interaction is challenging. However, few empirical studies have actually focused on what health care professionals think about this interaction. This study aimed to explore health care professionals’ understandings of cross-cultural interaction during end-of-life care. Methods Sixty end-of-life care professionals were recruited from eleven care units in Sweden to take part in focus group interviews. These interviews were analyzed using qualitative content analysis. Results The health care professionals interviewed talked about cross-cultural interaction in end-of-life care as interaction that brings about uncertainty, stress and frustration even though they had limited experience of this type of interaction. The focus group discussions brought attention to four specific challenges that they expected to meet when they care for patients with migrant backgrounds since they took for granted that they would have an ethno-cultural background that is different to their own. These challenges had to do with communication barriers, ‘unusual’ emotional and pain expressions, the expectation that these patients’ families would be ‘different’ and the anticipation that these patients and their families lack knowledge. At the core of the challenges in question is the idea that cross-cultural interaction means meeting “the unknown”. In addition, the end-of-life care professionals interviewed talked about patients whose backgrounds they did not share in homogenizing terms. It is against this backdrop that they worried about their ability to provide end-of-life care that is individualized enough to meet the needs of these patients. Conclusions The study suggests that end-of-life care professionals who regard cross-cultural interaction in this manner could face actual challenges when caring for patients whose backgrounds they regard as

  17. A residential aged care end-of-life care pathway (RAC EoLCP) for Australian aged care facilities.

    PubMed

    Reymond, Liz; Israel, Fiona J; Charles, Margaret A

    2011-08-01

    The objective of this study was to develop, implement and evaluate an end-of-life (terminal) care pathway and associated infrastructure suitable for Australian residential aged care facilities that improves resident and health system outcomes. The residential aged care end-of-life care pathway was developed by a multidisciplinary collaboration of government and non-government professionals and incorporated best clinical management for dying residents to guide care and increase palliative care capacity of generalist staff. Implementation included identifying and up-skilling Link Nurses to champion the pathway, networking facilities with specialist palliative care services, delivering education to generalists and commencing a Palliative Care Medication Imprest System in each facility. The primary outcome measure for evaluation was transfer to hospital; secondary measures included staff perceived changes in quality of palliative care provided and family satisfaction with care. Results indicated that the pathway, delivered within a care framework that guides provision of palliative care, resulted in improved resident outcomes and decreased inappropriate transfers to acute care settings.

  18. Effects of Constraints and Consequences on Plan Complexity in Conversations About End-of-Life Care.

    PubMed

    Russell, Jessica

    2015-01-01

    The current study assessed the role of health care provider constraints and perceived consequences on plan complexity for conversations with patients about end-of-life care. Meta-goal constraints, perceived consequences associated with conversational engagement and planning theory provides the basis for research questions and hypotheses posed. Findings suggested that while the meta-goals of efficiency and politeness were each recognized as important, providers indicated greater concern for politeness during patient interactions concerning treatment options. Reported constraints had no impact on plan complexity. Perceived consequences of conversational engagement were predominantly positive and concerned the patient. Findings may enhance the understanding of social workers in their educational role regarding the potential training needs of health care team members in palliative care contexts.

  19. Patient reported outcome measures of quality of end-of-life care: A systematic review.

    PubMed

    Kearns, Tara; Cornally, Nicola; Molloy, William

    2017-02-01

    End-of-life (EoL) care(1) is increasingly used as a generic term in preference to palliative care or terminal care, particularly with reference to individuals with chronic disease, who are resident in community and long-term care (LTC) settings. This review evaluates studies based on patient reported outcome measures (PROMS) of quality of EoL care across all health-care settings. From 1041 citations, 12 studies were extracted by searches conducted in EBSCO, Scopus, Web of Science, PubMed, Cochrane, Open Grey and Google Scholar databases. At present, the evidence base for EoL care is founded on cancer care. This review highlights the paucity of studies that evaluate quality of EoL care for patients with chronic disease outside the established cancer-acute care paradigm, particularly in LTC. This review highlights the absence of any PROMs for the estimated 60% of patients in LTC with cognitive impairment. Patient-reported outcomes (PROs) are critical to understanding how EoL care services and practices affect patients' health and EoL experience. PROMs describe the quality of care from the patient's perspective and add balance to existing clinical or proxy-derived knowledge on the quality of care and services provided.

  20. Common or multiple futures for end of life care around the world? Ideas from the 'waiting room of history'.

    PubMed

    Zaman, Shahaduz; Inbadas, Hamilton; Whitelaw, Alexander; Clark, David

    2017-01-01

    Around the world there is growing interest in the manner in which care is delivered to people at the end of life. However, there is little unanimity on what constitutes a 'good death' and the appropriate societal responses to the issue of delivering culturally relevant and sustainable forms of end of life care in different settings are not subjects of broad agreement. In this critical conceptual paper we focus on the emerging narratives of global palliative care and offer an assessment of their implications. We relate this to calls to improve end of life care across jurisdictions and settings, attempts to map and grade the development of palliative care provision, and to the emergence of a widely recognised global 'quality of death index'. We consider an alternative approach to framing this debate, drawn from a subaltern and post-colonial studies perspective and suggest that adopting a truly global perspective will require acceptance of the plurality of past and present local problems and issues relating to end of life care, as well as the plural possibilities of how they might be overcome. In that context, we would not aim to universalise or privilege one particular global future for end of life care. Instead of homogenising end of life interventions, we seek to be open to multiple futures for the care of the dying.

  1. Developing the science of end-of-life and palliative care research: National Institute of Nursing Research summit.

    PubMed

    Csikai, Ellen L

    2011-01-01

    A rare opportunity to examine accomplishments and identify ways to advance research in end-of-life and palliative care was offered by the National Institute of Nursing Research (NINR) through a summit meeting held in August 2011. The Science of Compassion: Future Directions in End-of-Life and Palliative Care brought together nationally recognized leaders in end-of-life and palliative care research, including grantees of NINR, as well as more than 700 attendees from all disciplines. It was an exciting affirmation of the importance of moving forward in the field. Presented in this article is a summary of the summit and a call to action for end-of-life and palliative care social workers to engage in seeking funding to conduct needed research and to ensure our unique perspective is represented.

  2. Valuing end-of-life care in the United States: the case of new cancer drugs.

    PubMed

    Sorenson, Corinna

    2012-10-01

    New cancer therapies offer the hope of improved diagnosis to patients with life-threatening disease. Over the past 5-10 years, a number of specialty drugs have entered clinical practice to provide better systemic therapy for advanced cancers that respond to few therapeutic alternatives. To date, however, such advances have been only modestly effective in extending life and come with a high price tag, raising questions about their value for money, patient access and implications for health care costs. This article explores some of the key issues present in valuing end-of-life care in the United States in the case of advanced cancer drugs, from the difficult trade-offs between their limited health benefits and high costs to the technical, political and social challenges in assessing their value and applying such evidence to inform policy and practice. A number of initial steps are discussed that could be pursued to improve the value of advanced cancer care.

  3. Practicing End-of-Life Conversations: Physician Communication Training Program in Palliative Care.

    PubMed

    Rucker, Bronwyn; Browning, David M

    2015-01-01

    A Physician Communication Training Program (PCTP) utilizing scripts based on actual family conferences with patients, families, and the health care team was developed at one medical center in the Northeast. The program was designed, adapted, and directed by a palliative care social worker. The primary goal of the program is to help residents and attending physicians build better communication skills in establishing goals of care and in end-of-life planning. The scripts focus on improving physicians' basic skills in conducting family meetings, discussing advance directives, prognosis, brain death, and withdrawal of life support. Excerpts from the scripts utilized in the program are included. Feedback from participants has been positive, with all respondents indicating improvement in their capacity to take part in these challenging conversations.

  4. Connectedness at the End of Life Among People Admitted to Inpatient Palliative Care.

    PubMed

    Håkanson, Cecilia; Öhlén, Joakim

    2016-02-01

    The significance of connectedness for well-being is well known. At the end of life however, illness and body decline may challenge a person's ability of staying and feeling connected. The aim of this phenomenological study was to interpret meanings of connectedness, through narrative interviews with persons admitted to inpatient palliative care in Sweden. Results involving connectedness through the body, connectedness to, and uncanniness toward other patients, and connectedness to significant others and society are discussed. The study underscores the importance of connectedness until death. However, in inpatient palliative care this is complex. Patients can co-create or challenge each other's sense of connectedness through the symbolism of illness and diseased bodies. Moreover, the capability of connectedness is influenced by illness, spatiality, atmosphere, activities, and resources in the care place.

  5. The findings of the Dartmouth Atlas Project: a challenge to clinical and ethical excellence in end-of-life care.

    PubMed

    Mitchell, John J

    2011-01-01

    The Dartmouth Institute for Health Policy and Clinical Practice Atlas Project found "staggering variations" in the quality and quantity of end-of-life care provided to Medicare patients with severe chronic illness across the United States. Particularly concerning is the finding that more care is provided to patients who live in "high-supply" areas, irrespective of the effectiveness of care, and that more care often equaled inappropriate care that increased patients' suffering at the end of life. Patients in "lower supply" areas typically received better, more appropriate levels of care and reported higher levels of satisfaction with the care they received.

  6. CE: Original Research: End-of-Life Care Behind Bars: A Systematic Review.

    PubMed

    Wion, Rachel K; Loeb, Susan J

    2016-03-01

    : To conduct a systematic review of the published research literature on end-of-life (EOL) care in prisons in order to determine the current state of the science and suggest implications for nursing practice and areas for future research.Applying the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, we performed a comprehensive search of the literature using the following databases: CINAHL, Criminal Justice Abstracts, the National Criminal Justice Reference Service, PsycINFO, PubMed, and Sociological Abstracts. All databases were searched from the time of their inception through June 2014. All English-language articles that reported on original quantitative and qualitative research involving EOL or palliative care delivered to prisoners were included. We abstracted data, using the matrix method, and independently reviewed and graded the evidence on its level of strength and quality in accordance with the Johns Hopkins Nursing Evidence-Based Practice rating scales.Nineteen articles, all published between 2002 and 2014, met the inclusion criteria. Of these, 53% were published between 2009 and 2014, and 58% reported findings from qualitative research. One article reported on research conducted in the United Kingdom; the remaining 18 reported on research conducted in the United States. Capacity (that is, the number of prisoners requiring EOL care and the ability of the prison to accommodate them) and the site of EOL care delivery varied across studies, as did the criteria for admission to EOL or hospice services. Care was provided by prison health care staff, which variously included numerous professional disciplines, corrections officers, and inmate caregivers. The inmate caregivers, in particular, provided a wide array of services and were viewed positively by both EOL patients and health care staff. There are insufficient data to characterize the patients' and inmate caregivers' perceptions of the EOL care staff and the quality

  7. Awareness of Palliative Care and End-of-Life Options Among African Canadians in Nova Scotia

    PubMed Central

    Maddalena, Victor; Bernard, Wanda Thomas; Davis-Murdoch, Sharon; Smith, Donna

    2016-01-01

    Purpose To assess, using qualitative methods, the knowledge African Canadians living in Nova Scotia have regarding their options for palliative and end-of-life (EOL) care. Design This project engaged caregivers in a Black community in Nova Scotia, Canada, in an exploration of palliative and EOL care. A group of six caregivers who cared for someone who had died were recruited through purposive sampling. The caregivers met three times to (1) discuss their experiences, (2) receive a presentation from the palliative care service, and (3) discuss whether those services would be beneficial. This was followed by a community meeting to discuss the findings. Findings Knowledge of options for palliative care services is limited. Family centered care may be a reason why “system” is generally not aware of the EOL experiences of African Nova Scotians. Discussion Information about palliative care services is not filtering down to the community in a way that is meaningful to families. Families tend to self-select services that assist them in providing care in the home setting. There is a need to engage Black communities and palliative care services in developing culturally appropriate services. PMID:23341407

  8. End-of-life care pathways as tools to promote and support a good death: a critical commentary.

    PubMed

    Watts, T

    2012-01-01

    This paper calls into question whether and how end-of-life care pathways facilitate the accomplishment of a 'good death'. Achieving a 'good death' is a prominent social and political priority and an ideal which underpins the philosophy of hospice and palliative care. End-of-life care pathways have been devised to enhance the care of imminently dying patients and their families across care settings and thereby facilitate the accomplishment of a 'good death'. These pathways have been enthusiastically adopted and are now recommended by governments in the UK as 'best practice' templates for end-of-life care. However, the literature reveals that the 'good death' is a nebulous, fluid concept. Moreover, concerns have been articulated regarding the efficacy of care pathways in terms of their impact on patient care and close analysis of two prominent end-of-life pathways reveals how biomedical aspects of care are privileged. Nonetheless drawing on a diverse range of evidence the literature indicates that end-of-life care pathways may facilitate a certain type of 'good death' and one which is associated with the dying process and framed within biomedicine.

  9. End-of-life nursing education consortium for pediatric palliative care (ELNEC-PPC).

    PubMed

    Malloy, Pam; Sumner, Elizabeth; Virani, Rose; Ferrell, Betty

    2007-01-01

    Pediatric nurses must often care for children with life-threatening illness. Although the child may be a neonate with multiple organ failure, a young adolescent diagnosed with HIV, or a 7-year-old child involved in a serious bicycle accident, pediatric nurses are an essential part of the interdisciplinary team that plans, organizes, implements, and manages the care of these children and their families. To date, more than 600 pediatric nurses have attended a national End-of-Life Nursing Education Consortium-Pediatric Palliative Care (ELNEC-PPC) training program. Many of these nurses have returned to their institutions dedicated to making a difference in the palliative care provided to children and their families. Because pediatric palliative care education is so important, many trainers have incorporated ELNEC-PPC into their nursing orientation, annual competencies, and undergraduate and graduate nursing education. They are developing standards of care and serve on key hospital/hospice committees, such as policy, education, clinical care, and ethics committees. This article showcases various activities of ELNEC-PPC trainers and demonstrates their commitment to improve pediatric palliative care not only in their institutions but also on local, state, national, and international levels.

  10. Team-Based Palliative and End-of-Life Care for Heart Failure

    PubMed Central

    Fendler, Timothy J.; Swetz, Keith M.; Allen, Larry A.

    2015-01-01

    SYNOPSIS Clinical practice guidelines endorse the use of palliative care in patients with symptomatic heart failure. Palliative care is no longer seen as “giving up” or “accepting death,” but is now conceptualized as “supportive care” afforded to most patients with chronic, life-limiting illness. However, the optimal content and delivery of palliative care interventions remains unknown and its integration into existing heart failure disease management continues to be a challenge. Therefore, we will comment on the current state of multidisciplinary care for such patients, explore evidence supporting a team-based approach to palliative and end-of-life care for patients with heart failure, and identify high-priority areas for research. Ultimately, patients require a “heart failure medical home”, where various specialties may take a more central role in coordination of patient care at different times in the disease span, sometimes transitioning leadership from primary care to cardiology to palliative care. PMID:26142643

  11. Cost accounting for end-of-life care: recommendations to the field by the Cost Accounting Workgroup.

    PubMed

    Seninger, Stephen; Smith, Dean G

    2004-01-01

    Accurate measurement of economic costs is prerequisite to progress in improving the care delivered to Americans during the last stage of life. The Robert Wood Johnson Excellence in End-of-Life Care national program assembled a Cost Accounting Workgroup to identify accurate and meaningful methods to measure palliative and end-of-life health care use and costs. Eight key issues were identified: (1) planning the cost analysis; (2) identifying the perspective for cost analysis; (3) describing the end-of-life care program; (4) identifying the appropriate comparison group; (5) defining the period of care to be studied; (6) identifying the units of health care services; (7) assigning monetary values to health care service units; and (8) calculating costs. Economic principles of cost measurement and cost measurement issues encountered by practitioners were reviewed and incorporated into a set of recommendations.

  12. Communication skills training for dialysis decision-making and end-of-life care in nephrology.

    PubMed

    Schell, Jane O; Green, Jamie A; Tulsky, James A; Arnold, Robert M

    2013-04-01

    Nephrology fellows often face difficult conversations about dialysis initiation or withdrawal but are frequently unprepared for these discussions. Despite evidence that communication skills are teachable, few fellowship programs include such training. A communication skills workshop for nephrology fellows (NephroTalk) focused on delivering bad news and helping patients define care goals, including end-of-life preferences. This 4-hour workshop, held in October and November 2011, included didactics and practice sessions with standardized patients. Participants were nephrology fellows at Duke University and the University of Pittsburgh (n=22). Pre- and post-workshop surveys evaluated efficacy of the curriculum and measured changes in perceived preparedness on the basis on workshop training. Overall, 14% of fellows were white and 50% were male. Less than one-third (6 of 22) reported prior palliative care training. Survey response rate varied between 86% and 100%. Only 36% (8 of 22) and 38% (8 of 21) of respondents had received structured training in discussions for dialysis initiation or withdrawal. Respondents (19 of 19) felt that communication skills were important to being a "great nephrologist." Mean level of preparedness as measured with a five-point Likert scale significantly increased for all skills (range, 0.5-1.14; P<0.01), including delivering bad news, expressing empathy, and discussing dialysis initiation and withdrawal. All respondents (21 of 21) reported they would recommend this training to other fellows. NephroTalk is successful for improving preparedness among nephrology fellows for having difficult conversations about dialysis decision-making and end-of-life care.

  13. Attitudes on end-of-life care and advance care planning in the lesbian and gay community.

    PubMed

    Stein, G L; Bonuck, K A

    2001-01-01

    Gay men and lesbians have special interests in documenting their preferences regarding advance care planning and end-of-life care. A 64-item survey instrument was developed to ascertain the preferences of this community regarding approaches to end-of-life care, viewpoints on physician-assisted suicide (PAS) and euthanasia, and practices regarding advance care planning. The survey was completed by 575 participants recruited through community-based health care and social service organizations serving the lesbian and gay community, primarily in the New York metropolitan area. Respondents represent a diverse group of women (36%) and men (63%) from various age, racial/ethnic, and religious/spiritual backgrounds; 10% were human immunodeficiency virus (HIV)-positive. Respondents' perspectives on end-of-life care are generally consistent with findings from other attitudinal studies of U.S. adults: a majority supported legalization of PAS and preferred a palliative approach to end-of-life care. However, the gay community sample revealed even stronger support for assisted suicide and palliative care. Although respondents completed advance directives at a higher rate than adults generally, the legal importance for gay men and lesbians to execute directives should encourage health care providers and community organizations to assume a larger educational role on advance care planning. Results confirm other reports on the need to address provider communication skills. It is speculated that the HIV epidemic was a major influence behind these results because of the overwhelming personal impact of the epidemic on most gay men and lesbians during the past two decades.

  14. End-of-life care volunteers: a systematic review of the literature.

    PubMed

    Wilson, Donna M; Justice, Christopher; Thomas, Roger; Sheps, Sam; Macadam, Margaret; Brown, Margaret

    2005-11-01

    This report presents a review of 1988 and onwards research and other literature on end-of-life (EOL) care volunteers. Only 18 research or case studies articles were identified for an integrative review through a search of nine library databases. A review of this literature revealed three themes: (1) the roles of EOL volunteers, (2) volunteer training and other organizational needs or requirements, and (3) outcomes, particularly the impact of volunteering on volunteers and the impact of volunteers on EOL care. Despite limited statistical evidence, the available literature on EOL care volunteers clearly indicates that considerable potential benefit can be derived from EOL care volunteers' contributions, with their efforts benefiting dying persons, their families, paid EOL staff, and the volunteers themselves. More specifically, willing volunteers, particularly those with diverse skills and abilities, have the potential to significantly and positively impact EOL care in that they can perform many necessary and extra functions of value. Volunteers often augment and enhance the range of EOL care services provided to terminally ill individuals and their families. Volunteers should also be recognized as increasing the accessibility of EOL care. The role of the volunteer is not without challenge, however, both for the individuals who volunteer and the organizations that must orient them and provide a meaningful role for them.

  15. A study of oncology fellows' training in end-of-life care.

    PubMed

    Buss, Mary K; Lessen, David S; Sullivan, Amy M; Von Roenn, Jamie; Arnold, Robert M; Block, Susan D

    2007-05-01

    Caring for the dying is a core competency for oncologists, yet the quality of oncology fellowship training in end-of-life (EOL) care has not been assessed. A convenience sample of physicians attending the 2004 annual meeting of the American Society of Clinical Oncology responded to a 112-item questionnaire that assessed fellows' knowledge and education about EOL care. Of the 120 respondents, 107 (89%) rated caring for dying patients as"quite" or "very important. "Forty-two percent of the fellows rated the overall quality of teaching EOL care in their fellowship as "very good" or "excellent," whereas 23% gave such ratings to EOL teaching in fellowship (P < or = 0.001). Fellows viewed attending oncologists as having more expertise in dealing with acute complications of cancer (eg, managing spinal cord compression, 78%) than in delivering EOL care (eg, managing pain, 54%; P < 0.001). Fellows also were more likely to have received observation and feedback on bone marrow biopsies than on EOL discussions. Knowledge about key EOL care topics was poor; only 31% correctly performed an opioid conversion. Oncology fellows described deficiencies in training on EOL issues;they may benefit from improved education on EOL topics.

  16. Impact of a Palliative Care Program on End-of-life Care in a Neonatal Intensive Care Unit

    PubMed Central

    Younge, Noelle; Smith, P. Brian; Goldberg, Ronald N.; Brandon, Debra H.; Simmons, Catherine; Cotten, C. Michael; Bidegain, Margarita

    2015-01-01

    Objective Evaluate changes in end-of-life care following initiation of a Palliative Care Program in a neonatal intensive care unit. Study Design Retrospective study comparing infant deaths before and after implementation of a Palliative Care Program comprised of medication guidelines, an individualized order set, a nursing care plan, and staff education. Result 82 infants died before (Era 1) and 68 infants died after implementation of the program (Era 2). Morphine use was similar [88% vs. 81%; p=0.17], while benzodiazepines use increased in Era 2 [26% vs. 43%; p=0.03]. Withdrawal of life support (73% vs. 63%; p=0.17) and do-not-resuscitate orders (46% vs. 53%; p=0.42) were similar. Do-not-resuscitate orders and family meetings were more frequent among Era 2 infants with activated palliative care orders (n=21) compared to infants without activated orders (n=47). Conclusion End-of-life family meetings and benzodiazepine use increased following implementation of our program, likely reflecting adherence to guidelines and improved communication. PMID:25341195

  17. Researching a best-practice end-of-life care model for Canada.

    PubMed

    Wilson, Donna M; Birch, Stephen; Sheps, Sam; Thomas, Roger; Justice, Christopher; MacLeod, Rod

    2008-01-01

    The vast majority of the 220,000 Canadians who die each year, principally of old age and progressive ill health, do not have access to specialized hospice or palliative care. Hospice and palliative care programs are unevenly distributed across Canada, with existing programs limited in capacity and services varying considerably across programs. End-of-life (EOL) care is defined as "The services that may be needed by dying persons and their families or friends in the last year of life, as well as bereavement services following death." Although some health and social services may be available, most dying Canadians are in the difficult position of not having ready access to a full range of services that could ease their final days of life. Most are thus at risk of uncoordinated and potentially inadequate EOL care. Among all persons, dying persons are arguably the most vulnerable. The dying process is often difficult as a result of emotional and physical challenges. Although the loving support of family and friends for dying persons is irreplaceable, EOL care is an important public obligation. A synthesis research project was conducted to identify a best-practice EOL care model for Canada, one featuring coordinated or integrated EOL care. Through site visits, literature reviews, Web-based surveys, and a home care data analysis, four essential components for a best-practice integrated EOL care model for Canada were identified: (a) universality, (b) care coordination, (c) assured access to a broad range of basic and advanced EOL services, and (d) EOL care provision regardless of care setting. This model is offered as a guide for the development of EOL care services across Canada.

  18. Biofield therapies for symptom management in palliative and end-of-life care.

    PubMed

    Henneghan, Ashley M; Schnyer, Rosa N

    2015-02-01

    Terminally ill patients experience negative symptoms at end of life (EOL) that hinder well-being and quality of life (QOL). Current intervention strategies are not always effective or feasible. A focused literature review to evaluate the use of biofield therapies (ie, Therapeutic Touch, Healing Touch, and Reiki) to manage the symptoms in EOL revealed no studies on the use these therapies, specifically in this population. Evidence from studies on relevant populations (patients with cancer, elderly patients, and patients experiencing chronic pain), which addressed the outcomes relevant to palliative and EOL care (EOLC; pain levels, changes in psychological symptoms, well-being, and QOL), supports the use of biofield therapies in relieving pain, improving QOL and well-being, and reducing psychological symptoms of stress. Further research to assess the use of biofield therapies in EOLC is clearly needed.

  19. Care versus treatment at the end of life for profoundly disabled persons.

    PubMed

    Spike, Jeffrey P

    2012-01-01

    Individuals who are profoundly mentally handicapped do not have the capacity to make their own decisions and also do not have a past record of decisions, from when they had capacity, to guide us in making decisions for them. They represent a difficult group, ethically, for surrogate decision making. Here I propose some guidelines, distinguishing between these patients and patients in a persistent vegetative state (PVS). As the life span of patients becomes shorter, or their level of consciousness becomes permanently impaired, the presumption for comfort care should become an imperative, and the standard of evidence to justify any invasive intervention should become higher. For members of this population, who have no more ability to refuse treatment than to consent to it, protection of the vulnerable must mean allowing a peaceful death as well as a comfortable life. Reasonable legal safeguards are also proposed to allow improved end-of-life decisions to be made for this population.

  20. End-of-Life Care and Psychiatry: Current Trends and Future Directions in India

    PubMed Central

    Deodhar, Jayita K.

    2016-01-01

    Although 80% of the deaths worldwide occur in middle- and low-income countries such as India, there is less awareness of end-of-life care (EOLC) for people with chronic, serious, progressive, or advanced life-limiting illnesses, including dementia. EOLC involves good communication, clinical decision-making, liaison with medical teams and families, comprehensive assessment of and specialized interventions for physical, psychological, spiritual, and social needs of patients and their caregivers. The psychiatrist can play a significant role in each of the above domains in EOLC. The current trends in India are examined, including ambiguities between EOLC and euthanasia. Future directions include formulating a national EOLC policy, providing appropriate services and training. The psychiatrist should get involved in this process, with major responsibilities in providing good quality EOLC for patients with both life-limiting physical illnesses and severe mental disorders, supporting their caregivers, and ensuring dignity in death. PMID:28031629

  1. End-of-Life Care and Psychiatry: Current Trends and Future Directions in India.

    PubMed

    Deodhar, Jayita K

    2016-01-01

    Although 80% of the deaths worldwide occur in middle- and low-income countries such as India, there is less awareness of end-of-life care (EOLC) for people with chronic, serious, progressive, or advanced life-limiting illnesses, including dementia. EOLC involves good communication, clinical decision-making, liaison with medical teams and families, comprehensive assessment of and specialized interventions for physical, psychological, spiritual, and social needs of patients and their caregivers. The psychiatrist can play a significant role in each of the above domains in EOLC. The current trends in India are examined, including ambiguities between EOLC and euthanasia. Future directions include formulating a national EOLC policy, providing appropriate services and training. The psychiatrist should get involved in this process, with major responsibilities in providing good quality EOLC for patients with both life-limiting physical illnesses and severe mental disorders, supporting their caregivers, and ensuring dignity in death.

  2. Using the Gold Standards Framework to deliver good end of life care.

    PubMed

    Quinn, Barry; Thomas, Keri

    2017-02-27

    The aims of excellent end of life care (EOLC) and nursing are at the heart of healthcare. Chelsea and Westminster Hospital NHS Foundation Trust, a multi-site London teaching care provider, recognises and values the importance of good EOLC, and the quality of EOLC is used as one of the key metrics in assessing the quality of patient and family care across the trust. The principles of EOLC, including those enshrined in the Gold Standards Framework (GSF), are closely aligned with the trust's core values. Each member of staff is encouraged and supported, through the GSF process, to recognise and respond as befits their role in implementing the principles of EOLC, agreed by staff, and by patients and their relatives. This article describes the experience of, and collaboration between, trust staff and members of the GSF team, who have worked together for the past 18 months, and how this work has placed EOLC at the heart of patient care and staff recruitment. This collaboration has helped to enrich the culture of compassion and care that the trust aims to deliver, and to focus on providing person-centred care.

  3. Collaboration between the specialties in provision of end-of-life care for all in the UK: reality or utopia?

    PubMed

    Procter, Elizabeth

    2012-07-01

    The UK End of Life Care Strategy (EoLCS) requires specialist palliative care services to contribute to end-of-life care for all. This systematic review aims to critically appraise literature published in the UK to identify how specialist palliative care professionals can collaborate with other health professionals within four of the key National Service Framework areas: heart failure, chronic obstructive pulmonary disease, neurological conditions, and dementia. Relevant literature was identified by electronic searches of various databases and websites and via secondary sources. A limited amount of quality research was found. Thematic analysis was applied and the over-riding themes were barriers to collaboration, organizational issues, and patients' and carers' views. The review concludes that when a collaborative approach to care is used, quality end-of-life care is achieved. Each disease pathway needs greater clarity regarding how it links with the EoLCS.

  4. Diversity in Defining End of Life Care: An Obstacle or the Way Forward?

    PubMed Central

    Gysels, Marjolein; Evans, Natalie; Meñaca, Arantza; Higginson, Irene J.; Harding, Richard; Pool, Robert

    2013-01-01

    Aim The terms used to describe care at the end of life (EoL), and its definitions, have evolved over time and reflect the changes in meaning the concept has undergone as the field develops. We explore the remit of EoL care as defined by experts in EoL care, from across Europe and beyond, to understand its current usage and meanings. Method A qualitative survey attached to a call for expertise on cultural issues in EoL care was sent to experts in the field identified through the literature, European EoL care associations, and conferences targeted at EoL care professionals. Respondents were asked to identify further contacts for snowball recruitment.The responses were analysed using content and discourse analysis. Results Responses were received from 167 individuals (33% response rate), mainly from academics (39%) and clinical practitioners working in an academic context (23%) from 19 countries in Europe and beyond. 29% of respondents said explicitly that there was no agreed definition of EoL care in practice and only 14% offered a standard definition (WHO, or local institution). 2% said that the concept of EoL care was not used in their country, and 5% said that there was opposition to the concept for religious or cultural reasons. Two approaches were identified to arrive at an understanding of EoL care: exclusively by drawing boundaries through setting time frames, and inclusively by approaching its scope in an integrative way. This led to reflections about terminology and whether defining EoL care is desirable. Conclusion The global expansion of EoL care contributes to the variety of interpretations of what it means. This complicates the endeavour of defining the field. However, when diversity is taken seriously it can open up new perspectives to underpin the ethical framework of EoL care. PMID:23844145

  5. Sedation, alimentation, hydration, and equivocation: careful conversation about care at the end of life.

    PubMed

    Jansen, Lynn A; Sulmasy, Daniel P

    2002-06-04

    In the recent medical ethics literature, several authors have recommended terminal sedation and refusal of hydration and nutrition as important, morally acceptable, and relatively uncontroversial treatment options for end-of-life suffering. However, not all authors use these terms to refer to the same practices. This paper examines the various ways that the terms terminal sedation and refusal of hydration and nutrition have been used in the medical literature. Although some of these practices are ethically appropriate responses to end-of-life suffering, others (at least as they are currently described in the medical ethics literature) are not. This paper identifies and discusses the principles that morally distinguish these practices from one another and specifically describes different features of medical practices and moral principles that affect the moral acceptability of various medical treatments. These distinctions reveal the complexity of the issues surrounding terminal sedation and refusal of hydration and nutrition, a complexity that has not been adequately addressed in recent discussions.

  6. Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada.

    PubMed

    Yu, Mo; Guerriere, Denise N; Coyte, Peter C

    2015-11-01

    In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of

  7. General Practitioners’ Attitudes towards Essential Competencies in End-of-Life Care: A Cross-Sectional Survey

    PubMed Central

    Giezendanner, Stéphanie; Jung, Corinna; Banderet, Hans-Ruedi; Otte, Ina Carola; Gudat, Heike; Haller, Dagmar M.; Elger, Bernice S.; Zemp, Elisabeth; Bally, Klaus

    2017-01-01

    Background Identifying essential competencies in end-of-life care, as well as general practitioners’ (GPs) confidence in these competencies, is essential to guide training and quality improvement efforts in this domain. Aim To determine which competencies in end-of-life care are considered important by GPs, to assess GPs’ confidence in these competencies in a European context and their reasons to refer terminally ill patients to a specialist. Design and Setting Cross-sectional postal survey involving a stratified random sample of 2000 GPs in Switzerland in 2014. Method Survey development was informed by a previous qualitative exploration of relevant end-of-life GP competencies. Main outcome measures were GPs’ assessment of the importance of and confidence in 18 attributes of end-of-life care competencies, and reasons for transferring care of terminally-ill patients to a specialist. GP characteristics associated with main outcome measures were tested using multivariate regression models. Results The response rate was 31%. Ninety-nine percent of GPs considered the recognition and treatment of pain as important, 86% felt confident about it. Few GPs felt confident in cultural (16%), spiritual (38%) and legal end-of-life competencies such as responding to patients seeking assisted suicide (35%) although more than half of the respondents regarded these competencies as important. Most frequent reasons to refer terminally ill patients to a specialist were lack of time (30%), better training of specialists (23%) and end-of-life care being incompatible with other duties (19%). In multiple regression analyses, confidence in end-of-life care was positively associated with GPs’ age, practice size, home visits and palliative training. Conclusions GPs considered non-somatic competencies (such as spiritual, cultural, ethical and legal aspects) nearly as important as pain and symptom control. Yet, few GPs felt confident in these non-somatic competencies. These findings

  8. [Volunteering in end-of-life care : Challenges, problems and perspectives].

    PubMed

    Schneider, Werner

    2017-01-01

    Volunteering in the hospice movement has had a profound impact on generating awareness of hospice work and palliative care in the context of supporting dying persons and their relatives as well as on integrating respective services in the existing health care system. This paper focuses on two specific questions: First, it asks how society is changing with respect to dealing with dying and death, and more precisely with dying persons, which is recognizable by the integration of hospice work and palliative care in the healthcare system and related to the relevance of volunteering in the sense of a citizens' movement. Second, this paper asks what the specific roles of volunteers are as well as the possibilities and limits of voluntary practice in end-of-life care and accompaniment. To answer these questions, the pivotal objectives of the hospice movement - the transformation of the social awareness regarding dying and death, as well as the reorganization of "institutions of dying" - will first be outlined by reference to the concept of "good dying", a specific hospice attitude together with hospice culture and palliative competence. In a second step, the relevance of volunteering and the specific role of volunteers in the actual practice of hospice work and palliative care will be outlined alongside current indicators and recognizable alteration tendencies, before concluding with a discussion of the perspectives of hospices as a citizens' movement.

  9. Commissioning care for people with dementia at the end of life: a mixed-methods study

    PubMed Central

    Gotts, Zoe M; Baur, Nicole; McLellan, Emma; Goodman, Claire; Robinson, Louise; Lee, Richard P

    2016-01-01

    Objectives To understand how end-of-life (EoL) care for people with dementia is currently commissioned (ie, contracted) and organised, with a view to informing the development of commissioning guidance for good-quality community-based EoL care in dementia. Design Mixed-methods study; narrative review and qualitative interviews. Setting 8 National Health Service (NHS) clinical commissioning groups (CCGs) and five adult services across England. Methods Narrative review of evidence; 20 semistructured interviews (telephone and face-to-face) with professionals involved in commissioning EoL care for people with dementia. Main outcome measures Summary of the existing evidence base for commissioning, commissioners' approaches to the commissioning process for EoL care for people with dementia in England. Results: In the context of commissioning EoL for people with dementia, the literature review generated three key themes: (1) importance of joint commissioning; (2) lack of clarity for the process and (3) factors influencing commissioning. In exploring health professionals' perceptions of the commissioning process, ‘uncertainty’ was elicited as an overarching theme across the CCGs interviewed. Organisation of the process, lack of expertise, issues surrounding integration and the art of specification were considered important factors that contribute to the uncertainty surrounding the commissioning process. Conclusions The current evidence base for commissioning EoL care is limited with considerable uncertainty as how clinical commissioners in England undertake the process to ensure future services are evidence-based. PMID:28003297

  10. Enteral nutrition in end of life care: the Jewish Halachic ethics.

    PubMed

    Greenberger, Chaya

    2015-06-01

    Providing versus foregoing enteral nutrition is a central issue in end-of-life care, affecting patients, families, nurses, and other health professionals. The aim of this article is to examine Jewish ethical perspectives on nourishing the dying and to analyze their implications for nursing practice, education, and research. Jewish ethics is based on religious law, called Halacha. Many Halachic scholars perceive withholding nourishment in end of life, even enterally, as hastening death. This reflects the divide they perceive between allowing a fatal disease to naturally run its course until an individual's vitality (life force or viability) is lost versus withholding nourishment for the vitality that still remains. The latter they maintain introduces a new cause of death. Nevertheless, coercing an individual to accept enteral nourishment is generally considered undignified and counterproductive. A minority of Halachic scholars classify withholding enteral nutrition as refraining from prolonging life, permitted under certain circumstances, especially in situations where nutritional problems flow directly from a fatal pathology. In the very final stages of dying, moreover, there is a general consensus that enteral nourishment may be withheld, providing that this reflects the dying individuals' wishes. In the event of enteral nourishment becoming a source of overwhelming discomfort, two Halachic ethical mandates would come into conflict: sustaining life by providing nourishment and alleviating suffering. As in all moral conflicts, these would have to be resolved in practice. This article presents the issue of enteral nourishment as it unfolds in Halacha in comparison to secular and other religious perspectives. It is meant to serve as a foundation for nurses to reflect on their own practice and to explore the implications for nursing practice, education, and research. In a world that remains broadly religious, it is important to sensitize health practitioners to the

  11. 76 FR 59145 - Submission for OMB Review; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-09-23

    ...-Life and Palliative Care Science Needs Assessment: Funding Source (Survey of Authors) Summary: Under... Care Science Needs Assessment: Funding Source (Survey of Authors). Type of Information Collection Request: NEW. Need and Use of Information Collection: The NINR End-of-Life Science Palliative Care (EOL...

  12. Culture and End of Life Care: A Scoping Exercise in Seven European Countries

    PubMed Central

    Gysels, Marjolein; Evans, Natalie; Meñaca, Arantza; Andrew, Erin; Toscani, Franco; Finetti, Sylvia; Pasman, H. Roeline; Higginson, Irene; Harding, Richard; Pool, Robert

    2012-01-01

    Aim Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries. Methods We scoped the literature for Germany, Norway, Belgium, the Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces) and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes. Results A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries). The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities. Conclusion This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for the improvement of Eo

  13. [Recommendations on making decisions and end of life care in neonatology].

    PubMed

    Tejedor Torres, J C; López de Heredia Goya, J; Herranz Rubia, N; Nicolás Jimenez, P; García Munóz, F; Pérez Rodríguez, J

    2013-03-01

    Healthcare-professionals who work in neonatal units believe that a very important part of their work is the care of sick newborns, and their families if the neonate has an incurable disease or will die. The effort is focused on preventing disproportionate and unnecessary treatments that result in pain and discomfort, and also separate the child from his family. These situations usually occur when the infant has a terminal illness, extreme immaturity with complications, or severe birth defects. In this paper, the Ethics Working Group of the Spanish Society of Neonatology reflects on decision making at this time of life. The ethical aspects are reviewed, including, limiting treatment, the basis of decision-making process (that should include adequate information), the relationship of trust, and deliberation between parents and professionals to make the right decision. It highlights the importance of caring for the family in a complex situation and of great suffering, when faced with the recommendation of professionals to limit treatment because their child suffers from a disease with a poor prognosis. The care of the sick neonate care at the end of life, and their families requires a considerable effort, dedication and training of all health personnel. The repeated experience of being close to suffering and death can adversely affect the professionals involved. Finally, there is mention of the legal aspects of limiting treatment, how to perform and document decision process, the withdrawal of life support, assessment of symptoms and pain control and sedation.

  14. Linguistic competence/language access services (LAS) in end-of-life and palliative care: a social work leadership imperative.

    PubMed

    Le Sage, Margie Rodríguez

    2006-01-01

    Despite the mandated and moral imperative to advance linguistic competence in all health care contexts, leadership that addresses this area of practice and study in end-of-life and palliative care is not readily obvious. Because social work is ideally suited to lead efforts to advance linguistically-accessible end-of-life and palliative care, social workers are encouraged to assume the challenge. This article focuses on topics that are elementary yet central to discussions on language diversity and leadership initiatives to advance language access in end-of-life and palliative care contexts: importance and function of language, extent of language diversity, inequity related to language diversity, mandates and standards related to language access, and approaches and competencies that contribute positively to language access.

  15. Strategies for the economic evaluation of end-of-life care: making a case for the capability approach.

    PubMed

    Coast, Joanna

    2014-08-01

    Economic evaluation of end of life care is increasingly expected from both research funders and those making decisions about the use of health and social care resources. There are, however, difficulties in applying the currently established evaluative methods to end of life. These are partly associated with the sensitivity of the topic and the feasibility of data collection but also, more fundamentally, a lack of agreement about the terms in which such care should be evaluated. This paper examines different theoretical perspectives from which economic evaluation of end of life care could be conducted, and argues for the application of a capability approach focusing on the opportunity for a good death. It then examines challenges with taking forward such an approach, including defining, measuring and valuing appropriate outcomes. It concludes that such an approach is viable, and explores how it might be taken forward to assist with resource allocation decisions.

  16. Is there a color line in death? An examination of end-of-life care in the African American community.

    PubMed

    Hazin, Ribhi; Giles, Cheryl A

    2011-07-01

    Although the goals of end-of-life care and hospice are to mitigate suffering and improve quality of life for patients with terminal illnesses, they remain underutilized by a significant number of African Americans. While sociocultural issues play a role in the underutilization of these resources among African Americans, other confounding factors affect the ability of African Americans to adequately access quality care at the end of life. Here, the authors examine the various barriers preventing increased use of hospice care and palliative therapy among African Americans. A particular focus of this examination will revolve around suggestions for increasing the use of end-of-life care among African Americans in the future.

  17. Palliative care and end-of-life planning in Parkinson's disease.

    PubMed

    Walker, Richard William

    2013-04-01

    In Parkinson's disease (PD) typical "palliative care" type symptoms, such as pain, nausea, weight loss and breathlessness can occur throughout the condition, but become more prevalent in later disease stages. Pain may be specifically related to PD, e.g. dystonic pain with wearing off, but is more commonly due to other conditions. The cause can usually be elicited by a careful history and examination, and this guides intervention, both non-pharmaceutical, and pharmaceutical. For example, dystonic pain will respond best to appropriate changes to dopaminergic medication. In later disease stages people have increasing problems with swallowing, and also cognitive impairment. Impaired swallowing may lead to aspiration pneumonia, which is a common cause of hospital admission, and also death. Decisions about interventions towards the end of life, such as insertion of percutaneous endoscopic gastrostomy (PEG) tube for nutrition, can be very challenging, particularly if, as in most cases, the person with PD has not previously expressed their views upon this while they still maintained capacity to make decisions. Advance care planning (ACP) in PD should be encouraged in relation to interventions such as PEG tubes. It may also cover issues such as preferred place of death. Over recent years lower proportions of people have been dying at home, and this is especially true for PD, but home may well be where they would have preferred to die. However, there is little evidence to guide health professionals about how, when, and by whom, ACP should be approached.

  18. Shaping end-of-life care: behavioral economics and advance directives.

    PubMed

    Halpern, Scott D

    2012-08-01

    A central but unmet challenge in health care delivery is to increase the probability that the care patients receive near the end of their life is consistent with their goals, values, and preferences. Providing patient-centered care at the end of life is challenging. In their final days, nearly a third of older Americans need critical decisions made regarding the use or nonuse of life-sustaining interventions, but the patients themselves cannot participate in those decisions. Although this observation highlights the promise of advance directives (ADs), to date ADs have not delivered on this promise. This article provides a new framework, based in behavioral economic theory, that may explain the current failures of ADs and point to potential solutions. Specifically, it discusses how five well-described cognitive biases that pervade human decision making (affective forecasting errors, optimism bias, present-biased preferences, focusing effects, and default options) may account for deficiencies in the uptake, efficacy, and patient-centeredness of ADs. The text suggests potential solutions in need of evaluation, discusses metrics for assessing these interventions' benefits, and considers alternatives to the approaches advocated.

  19. [Options for the improvement of communication and self-determination in end-of-life decisions in intensive care units].

    PubMed

    Zubek, László

    2016-04-24

    The end-of-life decision making process normally based on patient autonomy or substituted judgement. If the patient can express his/her wishes, one must take note of his autonomy. If he/she is unable to self-determination, the importance of advanced directives or substituted judgement increases in the field of end-of-life care. The most important target of the efforts is to improve end-of-life care at intensive care units. Based on bioethical studies of the author and international literature this paper analizes the practice of end-of-life care and presents recommendations for lawmakers. The author proposes to divide patients with organ failure into three parts (end-of-life triage). The first part includes definitely salvageable, the second part definitely unsalvageable, and the third part possibly salvageable groups. This classification depends on the development of medical science and the local options of medical treatment. The quality of the decision-making process can be improved, but all participants must participate and medio-legal regulation must be improved.

  20. Inuit interpreters engaged in end-of-life care in Nunavik, Northern Quebec

    PubMed Central

    Hordyk, Shawn Renee; Macdonald, Mary Ellen; Brassard, Paul

    2017-01-01

    ABSTRACT Background: Inuit interpreters are key players in end-of-life (EOL) care for Nunavik patients and families. This emotionally intensive work requires expertise in French, English and Inuit dialects to negotiate linguistic and cultural challenges. Cultural differences among medical institutions and Inuit communities can lead to value conflicts and moral dilemmas as interpreters navigate how best to transmit messages of care at EOL. Objectives: Our goal was to understand the experience of Inuit interpreters in the context of EOL care in Nunavik in order to identify training needs. Design: In the context of a larger ethnographic project on EOL care in Nunavik, we met with 24 current and former interpreters from local health centres and Montreal tertiary care contexts. Data included informal and formal interviews focusing on linguistic resources, experiences concerning EOL care, and suggestions for the development of interpretation training. Results: Inuit working as interpreters in Nunavik are hired to provide multiple services of which interpretation plays only a part. Many have no formal training and have few resources (e.g. visual aids, dictionaries) to draw upon during medical consultations. Given the small size of communities, many interpreters personally know their clients and often feel overwhelmed by moral dilemmas when translating EOL information for patients and families. The concept of moral distress is a helpful lens to make sense of their experience, including personal and professional repercussions. Conclusions: Inuit interpreters in Nunavik are working with little training yet in context with multiple linguistic and cultural challenges. Linguistic and cultural resources and focused training on moral dilemmas unique to circumpolar contexts could contribute to improved work conditions and ultimately to patient care.​​​​ PMID:28270034

  1. End of Life Care Policy for the Dying: Consensus Position Statement of Indian Association of Palliative Care

    PubMed Central

    Macaden, Stanley C; Salins, Naveen; Muckaden, Maryann; Kulkarni, Priyadarshini; Joad, Anjum; Nirabhawane, Vivek; Simha, Srinagesh

    2014-01-01

    EXECUTIVE SUMMARY Purpose: To develop an End of Life Care (EOLC) Policy for patients who are dying with an advanced life limiting illness. To improve the quality of care of the dying by limiting unnecessary therapeutic medical interventions, providing access to trained palliative care providers, ensuring availability of essential medications for pain and symptom control and improving awareness of EOLC issues through education initiatives. Evidence: A review of Country reports, observational studies and key surveys demonstrates that EOLC in India is delivered ineffectively, with a majority of the Indian population dying with no access to palliative care at end of life and essential medications for pain and symptom control. Limited awareness of EOLC among public and health care providers, lack of EOLC education, absent EOLC policy and ambiguous legal standpoint are some of the major barriers in effective EOLC delivery. Recommendations: Access to receive good palliative and EOLC is a human right. All patients are entitled to a dignified death. Government of India (GOI) to take urgent steps towards a legislation supporting good EOLC, and all hospitals and health care institutions to have a working EOLC policyProviding a comprehensive care process that minimizes physical and non physical symptoms in the end of life phase and ensuring access to essential medications for pain and symptom controlPalliative care and EOLC to be part of all hospital and community/home based programsStandards of palliative and EOLC as established by appropriate authorities and Indian Association of Palliative Care (IAPC) met and standards accredited and monitored by national and international accreditation bodiesAll health care providers with direct patient contact are urged to undergo EOLC certification, and EOLC training should be incorporated into the curriculum of health care education. PMID:25191002

  2. "Serious and complex illness" in quality improvement and policy reform for end-of-life care.

    PubMed

    Lynn, J; Forlini, J H

    2001-05-01

    Americans are living longer - a mark of success in public health and medical care - but more will live the last few years with progressive illness and disability. The dominant conception of care delivery separates "aggressive" or life-extending care from "palliative" or death-accepting care, with an assumed "transition" between them. The physiology and the experience of this population are mismatched in this model. Here, we propose a more useful category for public policy and clinical quality improvement: persons who will die as a result of "serious and complex illness." Delivery system changes could ensure reliable, continuous, and competent care to this population.

  3. Discordance in HIV-positive patient and healthcare provider perspectives on death, dying, and end-of-life care

    PubMed Central

    Mosack, Katie E.; Wandrey, Rachael L.

    2015-01-01

    The purpose of this study was to investigate how HIV-positive patients and infectious disease healthcare providers think about death, dying, and end-of-life care planning. We conducted separate in-depth qualitative interviews with 47 patients and 11 providers. Interview data were transcribed and analyzed using a secondary comparative method. Patients and providers demonstrated profound differences in their perspectives on patient empowerment and attributions of control related to disease progression, imminence of death, and end-of-life care decision-making. Notably, patients described fears related to life-extending interventions that generally went unaddressed within the clinical context. We argue for the routinization of end-of-life care discussions and suggest novel research approaches to improve patient empowerment and medical engagement. PMID:24316681

  4. A Literature Review of Randomized Controlled Trials of the Organization of Care at the End of Life

    ERIC Educational Resources Information Center

    Thomas, Roger E.; Wilson, Donna; Sheps, Sam

    2006-01-01

    We searched nine electronic databases for randomized controlled trials (RCTs) about care at the end of life and found 23 RCTs. We assessed their quality using the criteria of the Cochrane Collaboration. The RCTs researched three themes: (a) the effect of providing palliative care through dedicated community teams on quality of life, on the…

  5. Canadian Rural-urban Differences in End-of-life Care Setting Transitions

    PubMed Central

    Wilson, Donna M.; Thomas, Roger; Burns, Katharina Kovacs; Hewitt, Jessica A.; Jane, Osei-Waree; Sandra, Robertson

    2012-01-01

    Few studies have focused on the care setting transitions that occur in the last year of life. A three part mixed-methods study was conducted to gain an understanding of the number and implications or impact of care setting transitions in the last year of life for rural Canadians. Provincial health services utilization data, national online survey data, and local qualitative interview data were analyzed to gain general and specific information for consideration. Rural Albertans had significantly more healthcare setting transitions than urbanites in the last year of life (M=4.2 vs 3.3). Online family respondents reported 8 moves on average occurred for family members in the last year of life. These moves were most often identified (65%) on a likert-type scale as “very difficult,” with the free text information revealing these trips were often emotionally painful for themselves and physically painful for their ill family member. Eleven informants were then interviewed until data saturation, with constant-comparative data analysis conducted for a more in-depth understanding of rural transitions. Moving from place to place for needed care in the last year of life was identified as common and concerning for rural people and their families, with three data themes developing: (a) needed care in the last year of life is scattered across many places, (b) travelling is very difficult for terminally-ill persons and their caregivers, and (c) local rural services are minimal. These findings indicate planning is needed to avoid unnecessary end-of-life care setting transitions and to make needed moves for essential services in the last year of life less costly, stressful, and socially disruptive for rural people and their families. PMID:22980372

  6. End of Life in a Haitian American, Faith-Based Community: Caring for Family and Communal Unity.

    PubMed

    Ladd, Susan Charlotte; Gordon, Shirley C

    This article presents two models resulting from a grounded theory study of the end-of-life decision-making process for Haitian Americans. Successful access to this vulnerable population was achieved through the faith-based community. The first model describes this faith-based community of Haitian Americans. The second model describes the process used by families in this community who must make end-of-life healthcare decisions. Implications for nursing practice and caring science include a need to improve the congruence between the nursing care provided at this vulnerable time and the cultural values of a population.

  7. Caring Decisions: The Development of a Written Resource for Parents Facing End-of-Life Decisions

    PubMed Central

    Gillam, Lynn; Hynson, Jenny; Sullivan, Jane; Cossich, Mary; Wilkinson, Dominic

    2015-01-01

    Abstract Background: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. The Caring Decisions handbook and website were developed to fill these gaps. Aim: We discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation. Design: A targeted literature review-to identify resources and factors that impact on parental EoL decision-making; development phase-guided by the literature and the researchers' expertise; consultation process-comprised a multi-disciplinary panel of experts and parents; pilot evaluation study-hard-copy handbook was distributed as part of routine care at an Australian Children's Hospital. Setting/Participants: Twelve experts and parents formed the consultation panel. Eight parents of children with life-limiting conditions and clinicians were interviewed in the pilot study. Results: Numerous factors supporting/impeding EoL decisions were identified. Caring Decisions addressed issues identified in the literature and by the multidisciplinary research team. The consultation panel provided overwhelmingly positive feedback. Pilot study parents found the resources helpful and comforting. Most clinicians viewed the resources as very beneficial to parents and identified them as ideal for training purposes. Conclusions: The development of the resources addressed many of the gaps in existing resources. The consultation process and the pilot study suggest these resources could be of significant benefit to parents and clinicians. PMID:26418215

  8. End of life care in sub-Saharan Africa: a systematic review of the qualitative literature

    PubMed Central

    2011-01-01

    Background End of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research. It seeks to identify areas of existing research; describe findings specifically relevant to the African context; and, identify areas lacking evidence. Methods Relevant literature was identified through eight electronic databases: AMED, British Nursing Index & Archive, CINAHL, EMBASE, IBSS, MEDLINE, PsycINFO, and the Social Sciences Citation Index; and hand searches. Inclusion criteria were: published qualitative or mixed-method studies in sub-Saharan Africa, about EoL care. Study quality was assessed using a standard grading scale. Relevant data including findings and practice recommendations were extracted and compared in tabular format. Results Of the 407 articles initially identified, 51 were included in the qualitative synthesis. Nineteen came from South Africa and the majority (38) focused on HIV/AIDS. Nine dealt with multiple or unspecified conditions and four were about cancer. Study respondents included health professionals, informal carers, patients, community members and bereaved relatives. Informal carers were typically women, the elderly and children, providing total care in the home, and lacking support from professionals or the extended family. Twenty studies focused on home-based care, describing how programmes function in practice and what is needed to make them effective. Patients and carers were reported to prefer institutional care but this needs to be understood in context. Studies focusing on culture discussed good and bad death, culture-specific approaches to symptoms and

  9. Patient Care Planning Discussions for Patients at the End of Life: An Evidence-Based Analysis

    PubMed Central

    Baidoobonso, S

    2014-01-01

    Background Ontario spends about 9% of its health budget on care for people at the end of life (EoL), most of whom die from chronic, prolonged conditions. For many people, patient care planning discussions (PCPDs) can improve the quality and reduce the cost of care. Objectives This evidence-based analysis aimed to examine the effectiveness of PCPDs in achieving better patient-centred outcomes for people at the EoL. Data Sources A systematic literature search was conducted in MEDLINE, Embase, CINAHL, and EBM Reviews to identify relevant literature published between January 1, 2004, and October 9, 2013. Review Methods Peer-reviewed reports from randomized controlled trials (RCTs) and observational studies were examined. Outcomes included quality of life (QoL), satisfaction, concordance, advance care planning (ACP), and health care use. Quality of evidence was assessed using GRADE. Results While the effects of PCPDs on QoL are unclear, single-provider PCPDs were associated with family members being very satisfied with EoL care (odds ratio [OR]: 5.17 [95% CI: 1.52, 17.58]), improved concordance between patients’ and families’ wishes (OR: 4.32, P < 0.001), fewer episodes of hospital care (mean difference [MD]: −0.21, P = 0.04), spending fewer days in hospital (MD: −1.8, P = 0.03), and receiving hospice care (OR: 5.17 [95% CI: 2.03, 13.17]). Team-based PCPDs were associated with greater patient satisfaction (standardized mean difference [SMD]: 0.39 [95% CI: 0.17, 0.60]) and fewer outpatient visits (MD: −5.20 [95% CI: −9.70, −0.70]). Overall, PCPDs were associated with more ACP and more optimal health care use. Limitations Most of the RCTs were unblinded, intervention was measured or described inadequately in some studies, and the term “usual care” was often undefined. Conclusions Patients at the EoL and their families benefited from PCPDs. Furthermore, PCPDs occurring earlier in the course of illness were associated with better outcomes than those

  10. Palliative and end of life care communication as emerging priorities in postgraduate medical education

    PubMed Central

    Roze des Ordons, Amanda; Ajjawi, Rola; Macdonald, John; Sarti, Aimee; Lockyer, Jocelyn; Hartwick, Michael

    2016-01-01

    Background Reliance on surveys and qualitative studies of trainees to guide postgraduate education about palliative and end of life (EOL) communication may lead to gaps in the curriculum. We aimed to develop a deeper understanding of internal medicine trainees’ educational needs for a palliative and EOL communication curriculum and how these needs could be met. Methods Mixed methods, including a survey and focus groups with trainees, and interviews with clinical faculty and medical educators, were applied to develop a broader perspective on current experiences and needs for further education. Quantitative descriptive and thematic analyses were conducted. Results Surveyed trainees were least confident and least satisfied with teaching in counseling about the emotional impact of emergencies and discussing organ donation. Direct observation with feedback, small group discussion, and viewing videos of personal consultations were perceived as effective, yet infrequently identified as instructional methods. Focus groups and interviews identified goals of care conversations as the highest educational priority, with education adapted to learner needs and accompanied by feedback and concurrent clinical and organizational support. Conclusions Our work expands on previous research describing needs for postgraduate education in palliative and EOL communication to include the importance of support, culture change, and faculty development, and provides insight into why such needs exist. PMID:27103952

  11. Critical care nurses' perceptions of obstacles, supports, and knowledge needed in providing quality end-of-life care.

    PubMed

    Crump, Saundra K; Schaffer, Marjorie A; Schulte, Evie

    2010-01-01

    In response to critical care nurses' perceptions of increasing stress and conflict in difficult end-of-life (EOL) situations, the researchers conducted a study to identify perceived obstacles, supports, and knowledge needed to provide quality EOL care. The conclusions were as follows: (1) families and patients need clear, direct, and consistent information to make EOL decisions; (2) physician-related issues affect nurses' ability to provide quality EOL care; (3) critical care nurses need more knowledge, skill, and a sense of cultural competency to provide quality care; and (4) having properly completed advance directives can reduce confusion about the goals of care. Recommendations for improving EOL care were made as a result of the study.

  12. Education and training to enhance end-of-life care for nursing home staff: a systematic literature review

    PubMed Central

    Anstey, Sally; Powell, Tom; Coles, Bernadette; Hale, Rachel; Gould, Dinah

    2016-01-01

    Background The delivery of end-of-life care in nursing homes is challenging. This situation is of concern as 20% of the population die in this setting. Commonly reported reasons include limited access to medical care, inadequate clinical leadership and poor communication between nursing home and medical staff. Education for nursing home staff is suggested as the most important way of overcoming these obstacles. Objectives To identify educational interventions to enhance end-of-life care for nursing home staff and to identify types of study designs and outcomes to indicate success and benchmark interventions against recent international guidelines for education for palliative and end-of-life care. Design Thirteen databases and reference lists of key journals were searched from the inception of each up to September 2014. Included studies were appraised for quality and data were synthesised thematically. Results Twenty-one studies were reviewed. Methodological quality was poor. Education was not of a standard that could be expected to alter clinical behaviour and was evaluated mainly from the perspectives of staff: self-reported increase in knowledge, skills and confidence delivering care rather than direct evidence of impact on clinical practice and patient outcomes. Follow-up was often short term, and despite sound economic arguments for delivering effective end-of-life care to reduce burden on the health service, no economic analyses were reported. Conclusions There is a clear and urgent need to design educational interventions that have the potential to improve end-of-life care in nursing homes. Robust evaluation of these interventions should include impact on residents, families and staff and include economic analysis. PMID:27329513

  13. The impact of Roman Catholic moral theology on end-of-life care under the Texas Advance Directives Act.

    PubMed

    Zientek, David M

    2006-04-01

    This essay reviews the Roman Catholic moral tradition surrounding treatments at the end of life together with the challenges presented to that tradition by the Texas Advance Directives Act. The impact on Catholic health care facilities and physicians, and the way in which the moral tradition should be applied under this statute, particularly with reference to the provision dealing with conflicts over end-of-life treatments, will be critically assessed. I will argue, based on the traditional treatment of end-of-life issues, that Catholic physicians and institutions should appeal to the conflict resolution process of the Advance Directives Act only under a limited number of circumstances. The implications, under the Texas statute, of varied interpretations of Pope John Paul II's recent allocution on artificial feeding and hydration in the persistent vegetative state will also be considered.

  14. [Intensive medicine in the End-of-life Care. Considerations on the disposition of the Catholic church].

    PubMed

    Monteiro, Filipe

    2007-01-01

    End-of-life care cyclically occupies the headlines of the mass media. The disposition of the Catholic church, this matter, although unknown to many, has been the subject of discussion and controversy. In this article we analysed various documents of that religious institution, as well as the opinion of some well known personalities who studied this theme from a Catholic perspective.

  15. Practitioner-Raised Issues and End-of-Life Care for Adults with Down Syndrome and Dementia

    ERIC Educational Resources Information Center

    Watchman, Karen

    2005-01-01

    The author interviewed a small group of practitioners working in intellectual disability and palliative care settings about their perceptions of a number of end-of-life issues related to people with Down syndrome who were affected by dementia. The study, which took place in Scotland, identified a number of issues and perceptions expressed by the…

  16. End-of-Life and Palliative Care Issues in Medical and Nursing Schools in the United States

    ERIC Educational Resources Information Center

    Dickinson, George E.

    2007-01-01

    Medical and nursing schools in the United States have traditionally had a limited emphasis on end-of-life care. The present study is a comparison of these 2 professional programs' current offerings on death education. Data were gathered via a mailed survey from the 122 medical schools in 2005 and the 580 baccalaureate nursing programs in 2006.…

  17. The experience of providing end-of-life care to a relative with advanced dementia: an integrative literature review.

    PubMed

    Peacock, Shelley C

    2013-04-01

    The number of people with dementia is growing at an alarming rate. An abundance of research over the past two decades has examined the complex aspects of caring for a relative with dementia. However, far less research has been conducted specific to the experiences of family caregivers providing end-of-life care, which is perplexing, as dementia is a terminal illness. This article presents what is known and highlights the gaps in the literature relevant to the experiences of family caregivers of persons with dementia at the end of life. A thorough search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed databases from 1960 to 2011 was conducted. Ten studies were identified that specifically addressed the experience of family caregivers providing end-of-life care to a relative with advanced dementia. Common themes of these studies included: 1) the experience of grief, 2) guilt and burden with decision making, 3) how symptoms of depression may or may not be resolved with death of the care receiver, 4) how caregivers respond to the end-stage of dementia, and 5) expressed needs of family caregivers. It is evident from this literature review that much remains to be done to conceptualize the experience of end-of-life caregiving in dementia.

  18. Seeking worldwide professional consensus on the principles of end-of-life care for the critically ill. The Consensus for Worldwide End-of-Life Practice for Patients in Intensive Care Units (WELPICUS) study.

    PubMed

    Sprung, Charles L; Truog, Robert D; Curtis, J Randall; Joynt, Gavin M; Baras, Mario; Michalsen, Andrej; Briegel, Josef; Kesecioglu, Jozef; Efferen, Linda; De Robertis, Edoardo; Bulpa, Pierre; Metnitz, Philipp; Patil, Namrata; Hawryluck, Laura; Manthous, Constantine; Moreno, Rui; Leonard, Sara; Hill, Nicholas S; Wennberg, Elisabet; McDermid, Robert C; Mikstacki, Adam; Mularski, Richard A; Hartog, Christiane S; Avidan, Alexander

    2014-10-15

    Great differences in end-of-life practices in treating the critically ill around the world warrant agreement regarding the major ethical principles. This analysis determines the extent of worldwide consensus for end-of-life practices, delineates where there is and is not consensus, and analyzes reasons for lack of consensus. Critical care societies worldwide were invited to participate. Country coordinators were identified and draft statements were developed for major end-of-life issues and translated into six languages. Multidisciplinary responses using a web-based survey assessed agreement or disagreement with definitions and statements linked to anonymous demographic information. Consensus was prospectively defined as >80% agreement. Definitions and statements not obtaining consensus were revised based on comments of respondents, and then translated and redistributed. Of the initial 1,283 responses from 32 countries, consensus was found for 66 (81%) of the 81 definitions and statements; 26 (32%) had >90% agreement. With 83 additional responses to the original questionnaire (1,366 total) and 604 responses to the revised statements, consensus could be obtained for another 11 of the 15 statements. Consensus was obtained for informed consent, withholding and withdrawing life-sustaining treatment, legal requirements, intensive care unit therapies, cardiopulmonary resuscitation, shared decision making, medical and nursing consensus, brain death, and palliative care. Consensus was obtained for 77 of 81 (95%) statements. Worldwide consensus could be developed for the majority of definitions and statements about end-of-life practices. Statements achieving consensus provide standards of practice for end-of-life care; statements without consensus identify important areas for future research.

  19. Palliative care or end-of-life care in advanced chronic obstructive pulmonary disease A prospective community survey

    PubMed Central

    White, Patrick; White, Suzanne; Edmonds, Polly; Gysels, Marjolein; Moxham, John; Seed, Paul; Shipman, Cathy

    2011-01-01

    Background Calls for better end-of-life care for advanced chronic obstructive pulmonary disease (COPD) reflect the large number who die from the disease and their considerable unmet needs. Aim To determine palliative care needs in advanced COPD. Design Cross-sectional interview study in patients’ homes using structured questionnaires generated from 44 south London general practices. Method One hundred and sixty-three (61% response) patients were interviewed, mean age 72 years, 50% female, with diagnosis of COPD and at least two of: forced expiratory volume in the first second (FEV1) <40% predicted, hospital admissions or acute severe exacerbations with COPD, long-term oxygen therapy, cor pulmonale, use of oral steroids, and being housebound. Patients with advanced cancer, severe alcohol-related or mental health problems, or learning difficulties, were excluded; 145 patients were included in the analysis. Results One hundred and twenty-eight (88%) participants reported shortness of breath most days/every day, 45% were housebound, 75% had a carer. Medical records indicated that participants were at least as severe as non-participants. Eighty-two (57%) had severe breathlessness; 134 (92%) said breathlessness was their most important problem; 31 (21%) were on suboptimal treatment; 42 (30%) who were severely affected had not been admitted to hospital in the previous 2 years; 86 of 102 who had been admitted would want admission again if unwell to the same extent. None expressed existential concerns and few discussed need in terms of end-of-life care, despite severe breathlessness and impairment. Conclusion Needs in advanced COPD were considerable, with many reporting severe intractable breathlessness. Palliation of breathlessness was a priority, but discussion of need was seldom in terms of ‘end-of-life care’. PMID:21801516

  20. Capturing the costs of end-of-life care: comparisons of multiple sclerosis, Parkinson's disease, and dementia.

    PubMed

    McCrone, Paul

    2009-07-01

    The need for end-of-life care is going to increase substantially in many countries in the coming decades. In addition to considering the effectiveness of such care, it is also vital, given resource scarcity, to assess its costs and cost-effectiveness. Costs include the direct care inputs, other related services, and indirect costs, such as lost employment. These need to be measured in an appropriate way, and one relevant questionnaire is the Client Service Receipt Inventory. Studies of multiple sclerosis, Parkinson's disease, and dementia that have used this questionnaire are described in this article. What is clear is that the costs of providing end-of-life care can be high and that informal care from family members and friends accounts for a substantial amount of the overall costs.

  1. Death among elderly patients in the emergency department: a needs assessment for end-of-life care

    PubMed Central

    Pal, Rakhee Yash; Kuan, Win Sen; Koh, Yiwen; Venugopal, Kuhan; Ibrahim, Irwani

    2017-01-01

    INTRODUCTION Elderly patients with serious chronic diseases often present to the emergency department (ED) in the last moments of their life, many with identifiable trajectories of dying: organ failure, advanced cancer and chronic frailty. These patients and their families may benefit more from good end-of-life (EOL) care provision than the standard resuscitative approach. This study aimed to determine the incidence and nature of death among patients aged ≥ 65 years in an ED, and characterise their trajectories of dying. METHODS This was a retrospective study carried out over a one-year period in a tertiary ED. All ED deaths in patients aged ≥ 65 years over this period were included. Information on the patients’ demographics, comorbidities and details of death were extracted from the hospital’s electronic medical records database. Based on the available information, their Karnofsky Performance Status (KPS) scores and trajectories of dying were ascertained. RESULTS In one year, 197 patients aged ≥ 65 years died in the ED, 51.3% of whom suffered from serious chronic illnesses, with identifiable trajectories of dying. Of these patients, 46.5% had premorbid functional limitation with KPS scores of 0–40. However, only 14.9% of patients had a pre-existing resuscitation status and 74.3% received aggressive resuscitative measures. CONCLUSION There is a significant burden of EOL care needs among elderly patients in the ED. Many of these patients have chronic illness trajectories of dying. This study underscores the need for improvement in EOL care provision for dying patients and their families in the ED. PMID:27917433

  2. Communication Skills for End-of-Life Nursing Care: Teaching Strategies from the ELNEC Curriculum.

    ERIC Educational Resources Information Center

    Matzo, Marianne LaPorte; Sherman, Deborah Witt; Sheehan, Denice C.; Ferrell, Betty Rolling; Penn, Barbara

    2003-01-01

    Presents a key module in a 3-day train-the-trainer course in end-of-life nursing--competence in communicating with patients and families. Factors affecting communication, coping strategies for families, strategies for classroom and clinical teaching, and resources are described. (SK)

  3. Social Work and End-of-Life Care for Older People: A Historical Perspective

    ERIC Educational Resources Information Center

    Luptak, Marilyn

    2004-01-01

    End-of-life issues became increasingly complicated during the 20th century as profound shifts occurred in who died, how they died, and when they died. This article reviews societal changes related to death in the United States and chronicles the developments in social work practice with and for dying people and their families in the 20th century,…

  4. Medical care utilization and costs on end-of-life cancer patients: The role of hospice care.

    PubMed

    Chang, Hsiao-Ting; Lin, Ming-Hwai; Chen, Chun-Ku; Chen, Tzeng-Ji; Tsai, Shu-Lin; Cheng, Shao-Yi; Chiu, Tai-Yuan; Tsai, Shih-Tzu; Hwang, Shinn-Jang

    2016-11-01

    Although there are 3 hospice care programs for terminal cancer patients in Taiwan, the medical utilization and expenses for these patients by programs have not been well-explored. The aim of this study was to examine the medical utilization and expenses of terminal cancer patients under different programs of hospice care in the last 90, 30, and 14 days of life.This was a retrospective observational study by secondary data analysis. By using the National Health Insurance claim database and Hospice Shared Care Databases. We identified cancer descents from these databases and classified them into nonhospice care and hospice care groups based on different combination of hospice care received. We then analyzed medical utilization including inpatient care, outpatient care, emergency room visits, and medical expenses by patient groups in the last 90, 30, and 14 days of life.Among 118,376 cancer descents, 46.9% ever received hospice care. Patients had ever received hospice care had significantly lower average medical utilization and expenses in their last 90, 30, and 14 days of life (all P < 0.001) compared to nonhospice care group. Each hospice care group had significantly less medical utilization and expenses in the last 90, 30, and 14 days of life (all P < 0.01).Different kinds of hospice care program have different effects on medical care utilization reduction and cost-saving at different stage of the end of life of terminal cancer patients.

  5. Conflict resolution with end of life decisions in critical care settings.

    PubMed

    Murphy, C; Sweeney, M A

    1995-01-01

    This demonstration will present the key modules from an innovative videodisc-based program that was designed as an educational tool for health care professionals. It provides a resource for learning to deal with patients and families regarding the increasing problematic area of end-of-life-decisions. Tough Choices: Ethics, the Elderly, and Life-Sustaining Technologies is an interactive program that combines abstract ethical approaches with the realistic drama of a critical care setting. The format integrates scientific facts about the patient with value questions regarding the utilization of life-sustaining technologies. The unique program provides health care personnel with strategies on how to guide family decision-making as well as examples of the various interventions. This interactive multimedia program opens up an opportunity for health care providers to participate in a clinical case in which life and death decisions are made. Learners can explore various perspectives and treatment options within the framework of the dramatic case presentation without the usual time constraints or worries about causing harm to patients. The program involves learners in a variety of ethical and legal dilemmas that centers around a patient, her family, and a variety of health care professionals. Dramatic advances in the development of life-sustaining medical technologies have given hope to many people whose conditions would have meant certain death only a few years ago. As access to the technologies has expanded, concern for their appropriate utilization has become an issue worthy of increasing attention. Questions about the benefits of life-sustaining treatments are being raised in many quarters, particularly when the technology is viewed as a modern means of postponing death and prolonging suffering. Tough Choices brings to life the story of Irene Sullivan, an elderly widow who has an unexpected heart attack. Suddenly, her very existence depends on the life-support provided

  6. Nurse and Physician Barriers to Spiritual Care Provision at the End of Life

    PubMed Central

    Balboni, Michael J.; Sullivan, Adam; Enzinger, Andrea C.; Epstein-Peterson, Zachary D.; Tseng, Yolanda D.; Mitchell, Christine; Niska, Joshua; Zollfrank, Angelika; VanderWeele, Tyler J.; Balboni, Tracy A.

    2015-01-01

    Context Spiritual care (SC) from medical practitioners is infrequent at the end of life (EOL) despite national standards. Objectives The study aimed to describe nurses' and physicians' desire to provide SC to terminally ill patients and assess 11 potential SC barriers. Methods This was a survey-based, multisite study conducted from October 2008 through January 2009. All eligible oncology nurses and physicians at four Boston academic centers were approached for study participation; 339 nurses and physicians participated (response rate = 63%). Results Most nurses and physicians desire to provide SC within the setting of terminal illness (74% vs. 60%, respectively; P = 0.002); however, 40% of nurses/physicians provide SC less often than they desire. The most highly endorsed barriers were “lack of private space” for nurses and “lack of time” for physicians, but neither was associated with actual SC provision. Barriers that predicted less frequent SC for all medical professionals included inadequate training (nurses: odds ratio [OR] = 0.28, 95% confidence interval [CI] = 0.12–0.73, P = 0.01; physicians: OR = 0.49, 95% CI = 0.25–0.95, P = 0.04), “not my professional role” (nurses: OR = 0.21, 95% CI = 0.07–0.61, P = 0.004; physicians: OR = 0.35, 95% CI = 0.17–0.72, P = 0.004), and “power inequity with patient” (nurses: OR = 0.33, 95% CI = 0.12–0.87, P = 0.03; physicians: OR = 0.41, 95% CI = 0.21–0.78, P = 0.007). A minority of nurses and physicians (21% and 49%, P = 0.003, respectively) did not desire SC training. Those less likely to desire SC training reported lower self-ratings of spirituality (nurses: OR = 5.00, 95% CI = 1.82–12.50, P = 0.002; physicians: OR = 3.33, 95% CI = 1.82–5.88, P < 0.001) and male gender (physicians: OR = 3.03, 95% CI = 1.67–5.56, P < 0.001). Conclusion SC training is suggested to be critical to the provision of SC in accordance with national care quality standards. PMID:24480531

  7. Public preferences and priorities for end-of-life care in Kenya: a population-based street survey

    PubMed Central

    2014-01-01

    Background End-of-life care needs are great in Africa due to the burden of disease. This study aimed to explore public preferences and priorities for end-of-life care in Nairobi, Kenya. Methods Population-based street survey of Kenyans aged ≥18; researchers approached every 10th person, alternating men and women. Structured interviews investigated quality vs. quantity of life, care priorities, preferences for information, decision-making, place of death (most and least favourite) and focus of care in a hypothetical scenario of serious illness with <1 year to live. Descriptive analysis examined variations. Results 201 individuals were interviewed (100 women) representing 17 tribes (n = 90 44.8%, Kikuyu). 56.7% (n = 114) said they would always like to be told if they had limited time left. The majority (n = 121, 61.4%) preferred quality of life over quantity i.e. extending life (n = 47, 23.9%). Keeping a positive attitude and ensuring relatives/friends were not worried were prioritised above having pain/discomfort relieved. The three most concerning problems were pain (45.8%), family burden (34.8%) and personal psychological distress (29.8%). Home was both the most (51.1% n = 98) and least (23.7% n = 44) preferred place of death. Conclusion This first population-based survey on preferences and priorities for end-of-life care in Africa revealed that psycho-social domains were of greatest importance to the public, but also identified variations that require further exploration. If citizens’ preferences and priorities are to be met, the development of end-of-life care services to deliver preferences in Kenya should ensure an holistic model of palliative care responsive to individual preferences across care settings including at home. PMID:24529217

  8. Nationwide continuous monitoring of end-of-life care via representative networks of general practitioners in Europe

    PubMed Central

    2013-01-01

    Background Although end-of-life care has become an issue of great clinical and public health concern in Europe and beyond, we lack population-based nationwide data that monitor and compare the circumstances of dying and care received in the final months of life in different countries. The European Sentinel GP Networks Monitoring End of Life Care (EURO SENTIMELC) study was designed to describe and compare the last months of life of patients dying in different European countries. We aim to describe how representative GP networks in the EURO SENTIMELC study operate to monitor end of life care in a country, to describe used methodology, research procedures, representativity and characteristics of the population reached using this methodology. Methods Nationwide representative Networks of General Practitioners (GPs) – ie epidemiological surveillance systems representative of all GPs in a country or large region of a country – in Belgium, the Netherlands, Italy and Spain continuously registered every deceased patient (>18 year) in their practice, using weekly standardized registration forms, during two consecutive years (2009–2010). All GPs were asked to identify patients who had died “non-suddenly”. The last three months of these patients’ lives was surveyed retrospectively. Several quality control measures were used to ensure data of high scientific quality. Results A total of 6858 deaths were registered of which two thirds died non-suddenly (from 62% in the Netherlands to 69% in Spain), representative for the GP populations in the participating countries. Of all non-sudden deaths, between 32% and 44% of deaths were aged 85 or older; between 46% and 54% were female, and between 23% and 49% died at home. Cancer was cause of death in 37% to 53% of non-sudden death cases in the four participating countries. Conclusion Via the EURO SENTI-MELC methodology, we can build a descriptive epidemiological database on end-of-life care provision in several EU countries

  9. Home-Based Hospice Care Reduces End-of-Life Expenditure in Taiwan: A Population-Based Study.

    PubMed

    Chen, Li-Fu; Chang, Chun-Ming; Huang, Chih-Yuan

    2015-09-01

    Inpatient hospice care can reduce futile treatment and medical costs. However, the cost trimming effect of home-based hospice care in hospital has yet not been explored. This study evaluates the impact of home-based hospice care on end-of-life expenditure in hospitals with different spending intensity. This is a population-based retrospective study in Taiwan. Cancer decedents were identified in the National Health Insurance Research Database (NHIRD) from 2009 to 2011. They are categorized by hospital spending intensity. A hierarchical linear regression model with a random-intercept model was used to analyze the relationship between end-of-life expenditure (dependent variable) with and without home-based hospice, and both patient-level and hospital-level characteristics. A total of 78,613 cancer decedents were identified in the NHIRD from 2009 to 2011. Of these decedents, 17,638, 43,286, and 17,689 were categorized by hospital spending intensity as high, moderate, and low, respectively. Decedents with home-based hospice care were associated with US$2452 less in expenditure per patient compared with those without home-based hospice care. The majority of savings occurred in the last 3 months of life. These savings with home-based hospice care were consistent in hospitals with different levels of spending intensity. Home-based hospice reduced one-fifth expenditure at the end of life of cancer decedents treated in hospitals with different spending intensity.

  10. The patient-physician relationship. Ensuring competency in end-of-life care: communication and relational skills.

    PubMed

    von Gunten, C F; Ferris, F D; Emanuel, L L

    2000-12-20

    Physician competence in end-of-life care requires skill in communication, decision making, and building relationships, yet these skills were not taught to the majority of physicians during their training. This article presents a 7-step approach for physicians for structuring communication regarding care at the end of life. Physicians should prepare for discussions by confirming medical facts and establishing an appropriate environment; establish what the patient (and family) knows by using open-ended questions; determine how information is to be handled at the beginning of the patient-physician relationship; deliver the information in a sensitive but straightforward manner; respond to emotions of the patients, parents, and families; establish goals for care and treatment priorities when possible; and establish an overall plan. These 7 steps can be used in situations such as breaking bad news, setting treatment goals, advance care planning, withholding or withdrawing therapy, making decisions in sudden life-threatening illness, resolving conflict around medical futility, responding to a request for physician-assisted suicide, and guiding patients and families through the last hours of living and early stages after death. Effective application as part of core end-of-life care competencies is likely to improve patients' and families' experiences of care. It may also enhance physicians' professional fulfillment from satisfactory relationships with their patients and patients' families.

  11. End of life issues.

    PubMed

    Sykes, Nigel

    2008-05-01

    Despite advances in cancer survival rates, end of life care remains a vital aspect of cancer management. The use of integrated care pathways can facilitate effective care of dying patients in a generalist setting. However, it remains important that staff are able to recognise the onset of the dying process, not only in order to make symptom control provision, but also that appropriate communication can occur with patients and those close to them. This allows the exercise of choice over place and style of care. The key symptoms at the end of life are restlessness, agitation, breathlessness, pain and noisy respiration from retained airway secretions. Ethical tensions arise from the assumptions that the use of opioids and sedatives hastens dying, but this is contradicted by available evidence.

  12. Discordance in HIV-positive patient and health care provider perspectives on death, dying, and end-of-life care.

    PubMed

    Mosack, Katie E; Wandrey, Rachael L

    2015-03-01

    The purpose of this study was to investigate how HIV-positive patients and infectious disease health care providers think about death, dying, and end-of-life care (EOLC) planning. We conducted separate in-depth qualitative interviews with 47 patients and 11 providers. Interview data were transcribed and analyzed using a secondary comparative method. Patients and providers demonstrated profound differences in their perspectives on patient empowerment and attributions of control related to disease progression, imminence of death, and EOLC decision making. Notably, patients described fears related to life-extending interventions that generally went unaddressed within the clinical context. We argue for the routinization of EOLC discussions and suggest novel research approaches to improve patient empowerment and medical engagement.

  13. Advance Directives for End-of-Life Care and the Role of Health Education Specialists: Applying the Theory of Reasoned Action

    ERIC Educational Resources Information Center

    Tremethick, Mary Jane; Johnson, Maureen K.; Carter, Mary R.

    2011-01-01

    Quality end-of-life care is subjective and based on individual values and beliefs. An advance directive provides a legal means of communicating these values and beliefs, as well as preferences in regards to end-of-life care when an individual is no longer able to make his or her desires known. In many nations, advance directives are underused…

  14. ICU Nurses’ Perceptions and Practice of Spiritual Care at the End of Life: Implications for Policy Change

    PubMed

    Abu-El-Noor, Nasser

    2016-01-28

    Nurses strive to provide holistic care, including spiritual care, for all patients. However, in busy critical care environments, nurses often feel driven to focus on patients’ physical care, possibly at the expense of emotional and spiritual care. This study examined how Palestinian nurses working in intensive care units (ICUs) understand spirituality and the provision of spiritual care at the end of life. In this article, the author presents background studies, encouraging an increased emphasis on spiritual care, and describes the qualitative method used to study 13 ICU Gaza Strip nurses’ understanding of spiritual care. Findings identified the following themes: meaning of spirituality and spiritual care; identifying spiritual needs; and taking actions to meet spiritual needs. The author discusses the difficulty nurses had in differentiating spiritual and religious needs, notes the study limitations, and concludes by recommending increased emphasis on the provision of spiritual care for all patients.

  15. Illicit drug use as a challenge to the delivery of end-of-life care services to homeless persons: perceptions of health and social services professionals.

    PubMed

    McNeil, Ryan; Guirguis-Younger, Manal

    2012-06-01

    Homeless persons tend to die younger than the housed population and have complex, often unmet, end-of-life care needs. High levels of illicit drug use among this population are a particular challenge for health and social services professionals involved in end-of-life care services delivery. This article explores the challenges of end-of-life care services to homeless illicit drug users based on data collected during a national study on end-of-life care services delivery to homeless persons in Canada. The authors conducted qualitative interviews with 50 health and social services professionals involved in health services delivery to homeless persons in five cities. Interviews were transcribed verbatim and analysed thematically. Themes were organised into two domains. First, barriers preventing homeless illicit drug users from accessing end-of-life care services, such as competing priorities (e.g. withdrawal management), lack of trust in healthcare providers and discrimination. Second, challenges to end-of-life care services delivery to this population in health and social care settings, including non-disclosure of illicit drug use, pain and symptom management, interruptions in care, and lack of experience with addictions. The authors identify a need for increased research on the role of harm reduction in end-of-life care settings to address these challenges.

  16. Care at the Very End-of-Life: Dying Cancer Patients and Their Chosen Family’s Needs

    PubMed Central

    Clark, Katherine

    2017-01-01

    The majority of cancer deaths in countries such as Australia are predictable and most likely to occur in hospital. Despite this, hospitals remain challenged by providing the best care for this fragile cohort, often believing that care with palliative intent at the very end-of-life is not the best approach to care. Given the importance that dying patients place on excellent symptom control, failing to provide good end-of-life care is likely to be contrary to the wishes of the imminently dying patient and their family. This becomes even more significant when the impact of care on the bereavement outcomes of families is considered. Given the rising numbers of predicable hospital deaths, an urgent need to address this exists, requiring health professionals to be cognisant of specific care domains already identified as significant for both patients and those closest to them in knowledge, care and affection. This non-systematic review’s aims are to summarise the symptoms most feared by people imminently facing death which is defined as the terminal phase of life, where death is imminent and likely to occur within hours to days, or very occasionally, weeks. Further, this paper will explore the incidence and management of problems that may affect the dying person which are most feared by their family. The final section of this work includes a brief discussion of the most significant issues that require attention. PMID:28125017

  17. Truth Telling and Treatment Strategies in End-of-Life Care in Physician-Led Accountable Care Organizations: Discrepancies Between Patients' Preferences and Physicians' Perceptions.

    PubMed

    Huang, Hsien-Liang; Cheng, Shao-Yi; Yao, Chien-An; Hu, Wen-Yu; Chen, Ching-Yu; Chiu, Tai-Yuan

    2015-04-01

    Providing patient-centered care from preventive medicine to end-of-life care in order to improve care quality and reduce medical cost is important for accountable care. Physicians in the accountable care organizations (ACOs) are suitable for participating in supportive end-of-life care especially when facing issues in truth telling and treatment strategy. This study aimed to investigate patients' attitudes toward truth telling and treatment preferences in end-of-life care and compare patients' attitudes with their ACOs physicians' perceptions.This nationwide study applied snowball sampling to survey physicians in physician-led ACOs and their contracted patients by questionnaire from August 2010 to July 2011 in Taiwan. The main outcome measures were beliefs about palliative care, attitudes toward truth telling, and treatment preferences.The data of 314 patients (effective response rate = 88.7%) and 177 physicians (88.5%) were analyzed. Regarding truth telling about disease prognosis, 94.3% of patients preferred to be fully informed, whereas only 80% of their physicians had that perception (P < 0.001). Significant differences were also found in attitudes toward truth telling even when encountering terminal disease status (98.1% vs 85.3%). Regarding treatment preferences in terminal illness, nearly 90% of patients preferred supportive care, but only 15.8% of physicians reported that their patients had this preference (P < 0.001).Significant discrepancies exist between patients' preferences and physicians' perceptions toward truth telling and treatment strategies in end-of-life care. It is important to enhance physician-patient communication about end-of-life care preferences in order to achieve the goal of ACOs. Continuing education on communication about end-of-life care during physicians' professional development would be helpful in the reform strategies of establishing accountable care around the world.

  18. Assessing Challenges in End-of-Life Conversations With Patients Utilizing a Public Safety-Net Health Care System.

    PubMed

    Nedjat-Haiem, Frances R; Carrion, Iraida V

    2015-08-01

    Multiple factors influence end-of-life (EOL) care discussions that occur in health care systems, within organizations, among individuals working within these systems and in patients and family/friend support networks. This study examined barriers to EOL care discussions as experienced by health care providers working in a public safety-net health care system where the majority of their patients were low-income and immigrant Latinos seeking medical treatment. Qualitative data were collected in South Central Los Angeles through semistructured interviews with 46 health care providers from different disciplines in medicine, nursing, social work, and chaplaincy. The themes indicated communication barriers in the public sector health care setting and sociocultural patient- and family-level factors. All providers made valuable contributions to clarify the complexity of the problems. Universal strategies are needed to improve communication.

  19. Ethical dilemmas in the care of cancer patients near the end of life.

    PubMed

    Ong, W Y; Yee, C M; Lee, A

    2012-01-01

    By definition, an ethical dilemma involves the need to choose from among two or more morally acceptable options or between equally unacceptable courses of action, when one choice prevents selection of the other. Advances in medicine, increasing economic stress, rise of patient self-determination and differing values between healthcare workers and patients are among the many factors contributing to the frequency and complexity of ethical issues in healthcare. In the cancer patient near the end of life, common ethical dilemmas include those dealing with artificial nutrition and hydration, truth-telling and disagreements over management plans. It would stand the clinician in good stead to be aware of these issues and have an approach toward dealing with such problems. In addition, organisations have a responsibility to ensure that systems are in place to minimise its occurrence and ensure that staff are supported through the process of resolving dilemmas and conflicts that may arise.

  20. Providing hospice care to children and young adults: A descriptive study of end-of-life organizations

    PubMed Central

    Lindley, Lisa; Mark, Barbara; Lee, Shoou-Yih Daniel

    2010-01-01

    Over the past two decades, end-of-life organizations have served an increasing number of children and young adults and expanded services important to terminally ill youth, and yet we know little about these organizations. The purpose of this study was to describe the characteristics of end-of-life care organizations that admitted children and young adults to hospice care. Using data from the 2007 National Hospice and Palliative Care Organization (NHPCO) Survey, we conducted a descriptive analysis of operational, mission, market, and financial characteristics, and explored a sub-analysis by age group. Our analysis revealed that these organizations had similar profit status, ownership, and payer mix when compared to the hospice industry. However, they differed in agency type, referrals, organizational size, geographic location, team member caseload, and revenues. We also found important differences in organizations that provided hospice care by age groups (infants, toddler, school-age children, and adolescents/young adults) in geographic location, region, agency type, accreditation, and team member caseload. These findings have managerial and policy implications. PMID:20606723

  1. Nurses' knowledge of advance directives and perceived confidence in end-of-life care: a cross-sectional study in five countries.

    PubMed

    Coffey, Alice; McCarthy, Geraldine; Weathers, Elizabeth; Friedman, M Isabel; Gallo, Katherine; Ehrenfeld, Mally; Chan, Sophia; Li, William H C; Poletti, Piera; Zanotti, Renzo; Molloy, D William; McGlade, Ciara; Fitzpatrick, Joyce J; Itzhaki, Michal

    2016-06-01

    Nurses' knowledge regarding advance directives may affect their administration and completion in end-of-life care. Confidence among nurses is a barrier to the provision of quality end-of-life care. This study investigated nurses' knowledge of advance directives and perceived confidence in end-of-life care, in Hong Kong, Ireland, Israel, Italy and the USA using a cross-sectional descriptive design (n = 1089). In all countries, older nurses and those who had more professional experience felt more confident managing patients' symptoms at end-of-life and more comfortable stopping preventive medications at end-of-life. Nurses in the USA reported that they have more knowledge and experience of advance directives compared with other countries. In addition, they reported the highest levels of confidence and comfort in dealing with end-of-life care. Although legislation for advance directives does not yet exist in Ireland, nurses reported high levels of confidence in end-of-life care.

  2. A Model for Art Therapy-Based Supervision for End-of-Life Care Workers in Hong Kong.

    PubMed

    Potash, Jordan S; Chan, Faye; Ho, Andy H Y; Wang, Xiao Lu; Cheng, Carol

    2015-01-01

    End-of-life care workers and volunteers are particularly prone to burnout given the intense emotional and existential nature of their work. Supervision is one important way to provide adequate support that focuses on both professional and personal competencies. The inclusion of art therapy principles and practices within supervision further creates a dynamic platform for sustained self-reflection. A 6-week art therapy-based supervision group provided opportunities for developing emotional awareness, recognizing professional strengths, securing collegial relationships, and reflecting on death-related memories. The structure, rationale, and feedback are discussed.

  3. The dartmouth atlas applied to kaiser permanente: analysis of variation in care at the end of life.

    PubMed

    Stiefel, Matt; Feigenbaum, Paul; Fisher, Elliott S

    2008-01-01

    The Dartmouth Atlas method for examination of variation in care at the end of life was replicated by Kaiser Permanente (KP). Variation within KP was analyzed and compared with corresponding Dartmouth Atlas Hospital Referral Regions. Although KP inpatient care use rates were 25% to 30% lower and hospice use rates were higher than in the surrounding communities, there was still two- to four-fold variation in inpatient care use across KP geographic areas. Evidence suggests that more, or more intensive, care for this population is neither necessarily better nor desired by patients. If all California (CA) KP residence areas had the hospital day rate of the average of the lowest three, 2005 decedents would have had more than 50,000 fewer hospital days in their last six months of life. High-intensity care accounts for a large proportion of the overall variation in total costs for this population. This strongly reinforces the focus on appropriate intensive care unit (ICU) use in end-of-life care. Greater emphasis on palliative care approaches for patients with chronic conditions and earlier transition to the use of hospice would create a better match between the expressed desires of patients and the care they receive, thus improving member and family satisfaction as well as quality of care. In addition, earlier transition to hospice in KP could be one important tool for avoiding undesired and nonbeneficial ICU use, given the negative correlation between hospice and ICU use identified in this analysis.Geographic variation in hospital use within KP appears to be correlated with variation in the surrounding communities, even though it is lower on average within KP than outside it. This suggests that KP resource use may be influenced at least in part by broader community practices.

  4. Exploring the opinion of CKD patients on dialysis regarding end-of-life and Advance Care Planning.

    PubMed

    Sánchez-Tomero, J A; Rodríguez-Jornet, A; Balda, S; Cigarrán, S; Herrero, J C; Maduell, F; Martín, J; Palomar, R

    2011-01-01

    Advance care planning (ACP) and the subsequent advance directive document (ADD), previously known as "living wills", have not been widely used in Spain. The Ethics Group from the Spanish Society of Nephrology has developed a survey in order to investigate the opinion of dialysis patients regarding the ADD and end-of-life care. Patients received documentation explaining ACP and filled out a survey about their familiarity with and approval of the ADD. Seven hospital dialysis centres participated in the study for a total of 416 active dialysis patients. Questionnaires were distributed to 263 patients, 154 of which answered (69.2% completed them without assistance). The rates for ADD implementation (7.9%) and designation of a representative person (6.6%) were very low. Most of the patients clearly expressed their wishes about irreversible coma, vegetative state, dementia and untreatable disease. More than 65% did not want mechanical ventilation, chronic dialysis, tube feeding or resuscitation if cardiorespiratory arrest occurred. They reported that an ADD could be done before starting dialysis but most thought that it should be offered only to those who requested it (65% vs 34%). In conclusion, patients have clear wishes about end-of-life care, although these desires had not been documented due to the very low implementation of the ADD.

  5. Social workers' roles in addressing the complex end-of-life care needs of elders with advanced chronic disease.

    PubMed

    Kramer, Betty J

    2013-01-01

    This study examined social workers' roles in caring for low-income elders with advanced chronic disease in an innovative, community-based managed care program, from the perspective of elders, family, team members, and social workers. The results are drawn from a larger longitudinal, multimethod case study. Sources of data include survey reports of needs addressed by social workers for 120 deceased elders, five focus groups with interdisciplinary team members, and in-depth interviews with 14 elders and 10 of their family caregivers. A thematic conceptual matrix was developed to detail 32 distinctive social work roles that address divergent needs of elders, family, and team members. Distinctive perceptions of social workers' roles were identified for the different stakeholder groups (i.e., elders, family caregivers, team members, and social workers). Findings from this study may inform supervisors and educators regarding training needs of those preparing to enter the rapidly growing workforce of gerontological social workers who may be called upon to care for elders at the end of life. Training is particularly warranted to help social workers gain the skills needed to more successfully treat symptom management, depression, anxiety, agitation, grief, funeral planning, and spiritual needs that are common to the end of life.

  6. Behavioral and Educational Interventions to Support Family Caregivers in End-of-Life Care: A Systematic Review.

    PubMed

    Chi, Nai-Ching; Demiris, George; Lewis, Frances M; Walker, Amy J; Langer, Shelby L

    2016-11-01

    The demand for family caregivers steadily increases as the number of people receiving hospice and palliative care rises. Family caregivers play a significant role in supporting their loved ones in end-of-life care. However, there is limited evidence about the effectiveness of the interventions for supporting family caregivers. This article synthesizes behavioral and educational interventions that support family caregivers in end-of-life care. A systematic review was conducted and searched interventional studies published between 2004 and 2014 in PubMed, CINAHL, Embase, and The Cochrane Library electronic databases. Fourteen studies were identified and analyzed: 4 educational studies, 6 cognitive behavioral therapy studies, and 4 psychoeducational studies. All educational and behavioral interventions had developed structures and treatment manuals and improved family caregivers' outcomes. The cognitive behavioral therapy resulted in more positive outcomes than the other 2 interventions. More rigorous randomized controlled trials are needed to replicate current effective interventions with larger and diverse sample. Future studies need to develop tools for assessing family caregivers' needs, create consistent and specific tools to effectively measure family caregivers' outcomes, incorporate a cost-effectiveness analysis, and find the most efficient intervention format and method.

  7. End-of-life care in the 21st century: advance directives in universal rights discourse.

    PubMed

    Besirević, Violeta

    2010-03-01

    This article explores universal normative bases that could help to shape a workable legal construct that would facilitate a global use of advance directives. Although I believe that advance directives are of universal character, my primary aim in approaching this issue is to remain realistic. I will make three claims. First, I will argue that the principles of autonomy, dignity and informed consent, embodied in the Oviedo Convention and the UNESCO Declaration on Bioethics and Human Rights, could arguably be regarded as universal bases for the global use of advance directives. Second, I will demonstrate that, despite the apparent consensus of ethical authorities in support of their global use, it is unlikely, for the time being, that such consensus could lead to unqualified legal recognition of advance directives, because of different understandings of the nature of the international rules, meanings of autonomy and dignity which are context-specific and culture-specific, and existing imperfections that make advance directives either unworkable or hardly applicable in practice. The third claim suggests that the fact that the concept of the advance directive is not universally shared does not mean that it should not become so, but never as the only option in managing incompetent patients. A way to proceed is to prioritize work on developing higher standards in managing incompetent patients and on progressing towards the realization of universal human rights in the sphere of bioethics, by advocating a universal, legally binding international convention that would outlaw human rights violations in end-of-life decision-making.

  8. Appraisal of literature reviews on end-of-life care for minority ethnic groups in the UK and a critical comparison with policy recommendations from the UK end-of-life care strategy

    PubMed Central

    2011-01-01

    Background Evidence of low end-of-life (EoL) care service use by minority ethnic groups in the UK has given rise to a body of research and a number of reviews of the literature. This article aims to review and evaluate literature reviews on minority ethnic groups and EoL care in the UK and assess their suitability as an evidence base for policy. Methods Systematic review. Searches were carried out in thirteen electronic databases, eight journals, reference lists, and grey literature. Reviews were included if they concerned minority ethnic groups and EoL care in the UK. Reviews were graded for quality and key themes identified. Results Thirteen reviews (2001-2009) met inclusion criteria. Seven took a systematic approach, of which four scored highly for methodological quality (a mean score of six, median seven). The majority of systematic reviews were therefore of a reasonable methodological quality. Most reviews were restricted by ethnic group, aspect of EoL care, or were broader reviews which reported relevant findings. Six key themes were identified. Conclusions A number of reviews were systematic and scored highly for methodological quality. These reviews provide a good reflection of the primary evidence and could be used to inform policy. The complexity and inter-relatedness of factors leading to low service use was recognised and reflected in reviews' recommendations for service improvement. Recommendations made in the UK End-of-Life Care Strategy were limited in comparison, and the Strategy's evidence base concerning minority ethnic groups was found to be narrow. Future policy should be embedded strongly in the evidence base to reflect the current literature and minimise bias. PMID:21635738

  9. An Examination of Palliative or End-of-Life Care Education in Introductory Nursing Programs across Canada

    PubMed Central

    Wilson, Donna M.; Goodwin, Barbara L.; Hewitt, Jessica A.

    2011-01-01

    An investigation was done to assess for and describe the end-of-life education provided in Canadian nursing programs to prepare students for practice. All 35 university nursing schools/faculties were surveyed in 2004; 29 (82.9%) responded. At that time, all but one routinely provided this education, with that school developing a course (implemented the next year). As compared to past surveys, this survey revealed more class time, practicum hours, and topics covered, with this content and experiences deliberately planned and placed in curriculums. A check in 2010 revealed that all of these schools were providing death education similar to that described in 2004. These findings indicate that nurse educators recognize the need for all nurses to be prepared to care for dying persons and their families. Regardless, more needs to be done to ensure novice nurses feel capable of providing end-of-life care. Death education developments will be needed as deaths increase with population aging. PMID:22046505

  10. Care provider perspectives on end-of-life care in long-term-care homes: implications for whole-person and palliative care.

    PubMed

    Sims-Gould, Joanie; Wiersma, Elaine; Arseneau, Lise; Kelley, Mary Lou; Kozak, Jean; Habjan, Sonja; MacLean, Michael

    2010-01-01

    This study holistically explores the experience of dying and end-of-life care for older persons with dementia in long-term care (LTC) from the perspective of care providers. Using a focused ethnography methodology, seven researchers interviewed LTC staff, residents' families, volunteers, management staff, and spiritual advisers/clergy over a five-day period. Research was guided by two key questions: What is the dying experience of people living in LTC from the perspective of different care providers? and, What are the salient issues in providing palliative care for elderly people dying in LTC? Based on a thematic analysis of verbatim data, three common themes were identified: tension between completing job tasks on time and "being there" for residents; the importance of family-like bonds between front-line staff and residents; and the importance of communication among staff and between staff and residents and their families at the end of life. Findings are discussed in relation to their implications for policies and practices that can support whole-person care and ultimately a good death for residents of LTC facilities.

  11. Data Mining Nursing Care Plans of End of Life Patients: A Study to Improve Healthcare Decision Making

    PubMed Central

    Almasalha, F.; Xu, D.; Keenan, G. M.; Khokhar, A.; Yao, Y.; Chen, Yu-C.; Johnson, A.; Ansari, R.; Wilkie, D. J.

    2012-01-01

    Pain management of end of life patients (EOL) (n=596 episodes) is examined using statistical and data mining processes of the HANDS database of care plans coded with NANDA-I, NOC, and NIC (NNN) terminologies. HANDS episode data (episode =care plans updated at every handoff on a patient while staying on a hospital unit) were gathered in 8 units located in 4 different health care facilities (total episodes = 40,747; EOL episodes = 1,425) over two years. Results show the multiple discoveries such as EOL patients with hospital stays (< 72 hrs.) are less likely (p<0.005) to meet the pain relief goals compared to EOL patients with longer hospital stays. The study demonstrates a major benefit of systematically integrating NNN into electronic health records. PMID:23413930

  12. Factors and structural model related to end-of-life nursing care in general ward in Japan.

    PubMed

    Yoshioka, Saori; Moriyama, Michiko

    2013-03-01

    This study aimed to determine the factors related to the implementation of end-of-life nursing care in general wards and to examine the adequacy of the hypothetical care implementation model. A cross-sectional survey was conducted. As the results of multiple regression analysis, 8 factors were determined: subjective evaluation of nurses' own team, positive attitudes toward caring for dying persons, existence of a role model, death relief (Death Attitude Inventory), knowledge of symptom management knowledge of family assessment, abstract judgment skill, and participation in the seminar. The hypothetical model was constructed using these factors, and the adequacy of this model was confirmed by a structural equation modeling. These factors and the model would give suggestions of educational content and its method, which should be provided to general ward nurses.

  13. Death in the Digital Age: A Systematic Review of Information and Communication Technologies in End-of-Life Care

    PubMed Central

    Killoran, Peter; Shegog, Ross; Bruera, Eduardo

    2016-01-01

    Abstract Background: End-of-life (EOL) communication plays a critical role in ensuring that patients receive care concordant with their wishes and experience high quality of life. As the baby boomer population ages, scalable models of end-of-life communication will be needed to ensure that patients receive appropriate care. Information and communication technologies (ICTs) may help address the needs of this generation; however, few resources exist to guide the use of ICTs in EOL care. Objective: The primary objective was to identify the ICTs being used in EOL communication. The secondary objective was to compare the effectiveness of different ICTs in EOL communication. Methods: The study was a systematic review, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched seven databases for experimental and observational studies on EOL communication between doctors and patients using ICTs, published in 1997–2013. Results: The review identified 38 relevant articles. Eleven types of technology were identified: video, website, telephone, videoconferencing, e-mail, telemonitoring, Internet search, compact disc, fax, PalmPilot, and short message service (SMS) text messaging. ICTs were most commonly used to provide information or education, serve as decision aids, promote advance care planning (ACP), and relieve physical symptom distress. Conclusions: The use of ICTs in EOL care is a small but growing field of research. Additional research is needed to adapt older, analog technologies for use in the digital age. Many of the interventions discussed in this review do not take full advantage of the affordances of mobile, connected health ICTs. The growing evidence base for e-health applications in related fields should guide future interventions in EOL care. PMID:26713368

  14. End-of-life communication in Korean older adults: With focus on advance care planning and advance directives.

    PubMed

    Shin, Dong Wook; Lee, Ji Eun; Cho, BeLong; Yoo, Sang Ho; Kim, SangYun; Yoo, Jun-Hyun

    2016-04-01

    The present article aimed to provide a comprehensive review of current status of end-of-life (EOL) care and sociocultural considerations in Korea, with focus on the EOL communication and use of advance directives (AD) in elderly Koreans. Through literature review, we discuss the current status of EOL care and sociocultural considerations in Korea, and provide a look-ahead. In Korea, patients often receive life-sustaining treatment until the very end of life. Advance care planning is rare, and most do-not-resuscitate decisions are made between the family and physician at the very end of patient's life. Koreans, influenced mainly by Confucian tradition, prefer a natural death and discontinuation of life-sustaining treatment. Although Koreans generally believe that death is natural and unavoidable, they tend not to think about or discuss death, and regard preparation for death as unnecessary. As a result, AD are completed by just 4.7% of the general adult population. This situation can be explained by several sociocultural characteristics including opting for natural death, wish not to burden others, preference for family involvement and trust in doctor, avoidance of talking about death, and filial piety. Patients often receive life-sustaining treatment until the very EOL, advance care planning and the use of AD is not common in Korea. This was related to unique sociocultural characteristics of Korea. A more active role of physicians, development of a more deliberate EOL discussion process, development of culturally appropriate AD and promotion of advance care planning might be required to provide good EOL care in Korea.

  15. Drugs, cancer and end-of-life care: a case study of pharmaceuticalization?

    PubMed

    Davis, Courtney

    2015-04-01

    There is evidence from some countries of a trend towards increasingly aggressive pharmacological treatment of patients with advanced, incurable cancer. To what extent should this be understood as a progressive development in which technological innovations address previously unmet needs, or is a significant amount of this expansion explained by futile or even harmful treatment? In this article it is argued that while some of this growth may be consistent with a progressive account of medicines consumption, part of the expansion is constituted by the inappropriate and overly aggressive use of drugs. Such use is often explained in terms of individual patient consumerism and/or factors to do with physician behaviour. Whilst acknowledging the role of physicians and patients' expectations, this paper, drawing on empirical research conducted in the US, the EU and the UK, examines the extent to which upstream factors shape expectations and drive pharmaceuticalisation, and explores the value of this concept as an analytical tool.

  16. Drugs, cancer and end-of-life care: A case study of pharmaceuticalization?

    PubMed Central

    Davis, Courtney

    2015-01-01

    There is evidence from some countries of a trend towards increasingly aggressive pharmacological treatment of patients with advanced, incurable cancer. To what extent should this be understood as a progressive development in which technological innovations address previously unmet needs, or is a significant amount of this expansion explained by futile or even harmful treatment? In this article it is argued that while some of this growth may be consistent with a progressive account of medicines consumption, part of the expansion is constituted by the inappropriate and overly aggressive use of drugs. Such use is often explained in terms of individual patient consumerism and/or factors to do with physician behaviour. Whilst acknowledging the role of physicians and patients' expectations, this paper, drawing on empirical research conducted in the US, the EU and the UK, examines the extent to which upstream factors shape expectations and drive pharmaceuticalisation, and explores the value of this concept as an analytical tool. PMID:25533871

  17. A palliative approach to dialysis care: a patient-centered transition to the end of life.

    PubMed

    Grubbs, Vanessa; Moss, Alvin H; Cohen, Lewis M; Fischer, Michael J; Germain, Michael J; Jassal, S Vanita; Perl, Jeffrey; Weiner, Daniel E; Mehrotra, Rajnish

    2014-12-05

    As the importance of providing patient-centered palliative care for patients with advanced illnesses gains attention, standard dialysis delivery may be inconsistent with the goals of care for many patients with ESRD. Many dialysis patients with life expectancy of <1 year may desire a palliative approach to dialysis care, which focuses on aligning patient treatment with patients' informed preferences. This commentary elucidates what comprises a palliative approach to dialysis care and describes its potential and appropriate use. It also reviews the barriers to integrating such an approach into the current clinical paradigm of care and existing infrastructure and outlines system-level changes needed to accommodate such an approach.

  18. A Palliative Approach to Dialysis Care: A Patient-Centered Transition to the End of Life

    PubMed Central

    Moss, Alvin H.; Cohen, Lewis M.; Fischer, Michael J.; Germain, Michael J.; Jassal, S. Vanita; Perl, Jeffrey; Weiner, Daniel E.; Mehrotra, Rajnish

    2014-01-01

    As the importance of providing patient-centered palliative care for patients with advanced illnesses gains attention, standard dialysis delivery may be inconsistent with the goals of care for many patients with ESRD. Many dialysis patients with life expectancy of <1 year may desire a palliative approach to dialysis care, which focuses on aligning patient treatment with patients’ informed preferences. This commentary elucidates what comprises a palliative approach to dialysis care and describes its potential and appropriate use. It also reviews the barriers to integrating such an approach into the current clinical paradigm of care and existing infrastructure and outlines system-level changes needed to accommodate such an approach. PMID:25104274

  19. A workshop to teach medical students communication skills and clinical knowledge about end-of-life care.

    PubMed

    Torke, Alexia M; Quest, Tammie E; Kinlaw, Kathy; Eley, J William; Branch, William T

    2004-05-01

    We describe a half-day workshop to teach third-year medical students three focused end-of-life care skills: breaking bad news, discussing advance directives, and assessing and managing pain. Our workshop included a readers' theater exercise and three role-play exercises. In two of the workshops, faculty members played the role of patients. We used readers' theater to engage the students on an emotional level and set a reflective tone for the workshop. Evaluations reflected that most respondents felt that the workshop enhanced their understanding and ability to address these skills with patients. By 6 months, many students reported applying these skills to patient care in a way they thought was effective.

  20. Researching a Best-Practice End-of-Life Care Model for Canada

    ERIC Educational Resources Information Center

    Wilson, Donna M.; Birch, Stephen; Sheps, Sam; Thomas, Roger; Justice, Christopher; MacLeod, Rod

    2008-01-01

    The vast majority of the 220,000 Canadians who die each year, principally of old age and progressive ill health, do not have access to specialized hospice or palliative care. Hospice and palliative care programs are unevenly distributed across Canada, with existing programs limited in capacity and services varying considerably across programs.…

  1. Educating Gerontologists for Cultural Proficiency in End-of-Life Care Practice

    ERIC Educational Resources Information Center

    Stein, Gary L.; Sherman, Patricia A.; Bullock, Karen

    2009-01-01

    An educational program was developed to train practitioners to provide care for patients and families that are responsive to cultural concerns. The aim was to increase knowledge and improve attitudes toward providing culturally proficient and culturally sensitive care for patients and families facing life-threatening illnesses. The program…

  2. End-of-Life Care Patterns Associated with Pediatric Palliative Care among Children Who Underwent Hematopoietic Stem Cell Transplant.

    PubMed

    Ullrich, Christina K; Lehmann, Leslie; London, Wendy B; Guo, Dongjing; Sridharan, Madhumitha; Koch, Richard; Wolfe, Joanne

    2016-06-01

    Stem cell transplantation (SCT) is an intensive therapy offering the possibility of cure for life-threatening conditions but with risk of serious complications and death. Outcomes associated with pediatric palliative care (PPC) for children who undergo SCT are unknown. Therefore, we evaluated whether PPC consultation is associated with differences in end-of-life (EOL) care patterns for children who underwent SCT and did not survive. Medical records of children who underwent SCT at Boston Children's Hospital/Dana-Farber Cancer Institute for any indication from September 2004 to December 2012 and did not survive were reviewed. Child demographic and clinical characteristics and PPC consultation and EOL care patterns were abstracted. Children who received PPC (PPC group) were compared with those who did not (non-PPC group). Children who received PPC consultation (n = 37) did not differ from the non-PPC group (n = 110) with respect to demographic or clinical characteristics, except they were more likely to have undergone unrelated allogeneic SCT (PPC, 68%; non-PPC, 39%; P = .02) or to have died from treatment-related toxicity (PPC, 76%; non-PPC, 54%; P = .03). PPC consultation occurred at a median of .7 months (interquartile range [IQR], .4 to 4.2) before death. PPC consultations most commonly addressed goals of care/decision-making (92%), psychosocial support (84%), pain management (65%), and non-pain symptom management (70%). Prognosis discussions (ie, the likelihood of survival) occurred more commonly in the PPC group (PPC, 97%; non-PPC, 83%; P = .04), as did resuscitation status discussions (PPC, 88%; non-PPC, 58%; P = .002). These discussions also occurred earlier in the PPC group, for prognosis a median of 8 days (IQR, 4 to 26) before death compared with 2 days (IQR, 1 to 13) in the non-PPC group and for resuscitation status a median of 7 days (IQR, 3 to 18) compared with 2 days (IQR, 1 to 5) in the non-PPC group (P < .001 for both of the timing

  3. End-of-life hospital care for cancer patients: an update.

    PubMed

    Dudevich, Alexey; Chen, Allie; Gula, Cheryl; Fagbemi, Josh

    2014-01-01

    Cancer is the leading cause of death in Canada, and the number of new cases is expected to increase as the population ages and grows. This study examined the use of hospital services in the last month of life by adult cancer patients who died in Canadian acute care hospitals in fiscal year 2012-2013. Almost 25,000 Canadian cancer patients - excluding those in Quebec - died in acute care hospitals, representing approximately 45% of the estimated cancer deaths in 2012-2013. The proportion of in-hospital deaths varied across jurisdictions. Twenty-three percent of these patients were admitted to acute care multiple times in their last 28 days of life, with a higher percentage for rural (29%) compared to urban (21%) patients. Relatively few patients used intensive care units or received inpatient chemotherapy in their last 14 days of life.

  4. End-of-life' decision making within intensive care - objective, consistent, defensible?

    PubMed Central

    Ravenscroft, A.; Bell, M

    2000-01-01

    Objective—To determine the objectivity, consistency and professional unanimity in the initiation, continuation and withdrawal of life-prolonging procedures in intensive care–to determine methods, time-scale for withdrawal and communication with both staff and relatives–to explore any professional unease about legality, morality or professional defensibility. Design—A structured questionnaire directed at clinical nurse managers for intensive care. Setting—All intensive care units in the Yorkshire region. Results—The survey reported a lack of consistency and objectivity in decision making in this area, with accompanying unease amongst staff. Conclusions—There is a need to work towards more consistent care, both before and during admission, for the protection of the individual patient and to allow rational assessment of intensive care need. Comprehensive audit should lead to objective defensible decisions and facilitate informed choice. More open debate and better communication should minimise this issue as a source of stress amongst staff in intensive care. Key Words: Euthanasia, passive • ethics, medical • critical care PMID:11129843

  5. Interactive Palliative and End-of-Life Care Modules for Pediatric Residents

    PubMed Central

    Doshi, Ami; Carrasca, London; Pian, Patricia; Auger, JoAnne; Baker, Amira; Proudfoot, James A.; Pian, Mark S.

    2017-01-01

    Background. There is a need for increased palliative care training during pediatric residency. Objective. In this pilot study, we created a comprehensive experiential model to teach palliative care skills to pediatric residents. Our Comfort Care Modules (CCMs) address pediatric palliative care (PPC) topics of breaking bad news, dyspnea, anxiety, pain management, and the dying child. We also evaluated a scoring system and gathered qualitative data. Methods. The CCMs are part of the University of California San Diego pediatric residency's second-year curriculum. Comparisons were made for statistical trends between residents exposed to the modules (n = 15) and those not exposed (n = 4). Results. Nineteen of 36 residents (52%) completed surveys to self-rate their preparedness, knowledge, and confidence about PPC before and after the intervention. Resident scores increased in all areas. All improvements reached statistical significance except confidence when breaking bad news. Overall, the resident feedback about the CCMs was positive. Conclusions. This study demonstrates that the CCMs can be performed effectively in an academic setting and can benefit residents' self-perception of preparedness, confidence, and knowledge about pediatric palliative care. In the future, we plan to implement the modules on a larger scale. We encourage their use in interprofessional settings and across institutions. PMID:28286527

  6. An interprofessional workshop for students to improve communication and collaboration skills in end-of-life care.

    PubMed

    Erickson, Jeanne M; Blackhall, Leslie; Brashers, Valentina; Varhegyi, Nikole

    2015-12-01

    Interprofessional care is critical for patients at the end of life (EOL), but programs to teach communication skills to medical and nursing students are rare. The aims of this study were to determine whether an interprofessional workshop improves (1) student attitudes toward teamwork and (2) self-efficacy for communicating in difficult situations. Nursing and medical students attended a workshop with collaborative role play of an EOL conversation. Before the workshop, students showed different attitudes toward teamwork and collaboration and varying levels of confidence about communication skills. After the workshop, both groups reported more positive attitudes toward teamwork but a mixed picture of confidence in communication. Experiential interprofessional education workshops enhance perceptions about the benefits of teamwork, but further teaching and evaluation methods are needed to maximize the effectiveness.

  7. Integrating Speech-Language Pathology Services in Palliative End-of-Life Care

    ERIC Educational Resources Information Center

    Pollens, Robin D.

    2012-01-01

    Clinical speech-language pathologists (SLPs) may receive referrals to consult with teams serving patients who have a severe and/or terminal disease. Palliative care focuses on the prevention or relief of suffering to maximize quality of life for these patients and their families. This article describes how the role of the SLP in palliative care…

  8. Creating Discursive Order at the End of Life: The Role of Genres in Palliative Care Settings

    ERIC Educational Resources Information Center

    Schryer, Catherine; McDougall, Allan; Tait, Glendon R.; Lingard, Lorelei

    2012-01-01

    This article investigates an emerging practice in palliative care: dignity therapy. Dignity therapy is a psychotherapeutic intervention that its proponents assert has clinically significant positive impacts on dying patients. Dignity therapy consists of a physician asking a patient a set of questions about his or her life and returning to the…

  9. Midwifing the End of Life: Expanding the Scope of Modern Midwifery Practice to Reclaim Palliative Care.

    PubMed

    Van Hoover, Cheri; Holt, Lisa

    2016-05-01

    Historically, midwives held an important role in society as cradle-to-grave practitioners who eased individuals, families, and communities through difficult transitions across the life span. In the United States, during the first half of the 20th century, physicians assumed care for people during birth and death, moving these elements of the human experience from homes into the hospital setting. These changes in practice resulted in a dehumanization of birth and death experiences and led to detachment from what it means to be human among members of society. There is a current movement across the United States to incorporate palliative care and hospice care into both the home setting and the inpatient setting. Through their education and training, certified nurse-midwives/certified midwives (CNMs/CMs) are well equipped to serve as hospice and palliative care clinicians. Current midwives, skilled in assisting women and families through the transition of pregnancy to motherhood, can use their education and skills to help individuals and their families through the transition from life to death. The similarities between these states of the human experience (pregnancy to birth and terminal illness to death) allow for a fluidity between these experiences from the midwife perspective. The many parallels between these 2 elements of the human condition include stress, anxiety, and pain. Training in holistic approaches to symptom management and supporting individuals through difficult experiences (eg, birth) gives midwives a unique perspective that is readily translatable to assist individuals and families through the passage between life and death.

  10. [Truth telling and advance care planning at the end of life].

    PubMed

    Hu, Wen-Yu; Yang, Chia-Ling

    2009-02-01

    One of the core values in terminal care the respect of patient 'autonomy'. This essay begins with a discussion of medical ethics principles and the Natural Death Act in Taiwan and then summarizes two medical ethical dilemmas, truth telling and advance care planning (ACP), faced in the development of hospice and palliative care in Taiwan. The terminal truth telling process incorporates the four basic principles of Assessment and preparation, Communication with family, Truth-telling process, and Support and follow up (the so-called "ACTs"). Many experts suggest practicing ACP by abiding by the following five steps: (1) presenting and illustrating topics; (2) facilitating a structured discussion; (3) completing documents with advanced directives (ADs); (4) reviewing and updating ADs; and (5) applying ADs in clinical circumstances. Finally, the myths and challenges in truth telling and ADs include the influence of healthcare system procedures and priorities, inadequate communication skills, and the psychological barriers of medical staffs. Good communication skills are critical to truth telling and ACP. Significant discussion about ACP should help engender mutual trust between patients and the medical staffs who take the time to establish such relationships. Promoting patient autonomy by providing the opportunity of a good death is an important goal of truth telling and ACP in which patients have opportunities to choose their terminal treatment.

  11. After the Liverpool Care Pathway—development of heuristics to guide end of life care for people with dementia: protocol of the ALCP study

    PubMed Central

    Davies, N; Manthorpe, J; Sampson, E L; Iliffe, S

    2015-01-01

    Introduction End of life care guidance for people with dementia is lacking and this has been made more problematic in England with the removal of one of the main end of life care guidelines which offered some structure, the Liverpool Care Pathway. This guidance gap may be eased with the development of heuristics (rules of thumb) which offer a fast and frugal form of decision-making. Objective To develop a toolkit of heuristics (rules of thumb) for practitioners to use when caring for people with dementia at the end of life. Method and analysis A mixed-method study using a co-design approach to develop heuristics in three phases. In phase 1, we will conduct at least six focus groups with family carers, health and social care practitioners from both hospital and community care services, using the ‘think-aloud’ method to understand decision-making processes and to develop a set of heuristics. The focus group topic guide will be developed from the findings of a previous study of 46 interviews of family carers about quality end-of-life care for people with dementia and a review of the literature. A multidisciplinary development team of health and social care practitioners will synthesise the findings from the focus groups to devise and refine a toolkit of heuristics. Phase 2 will test the use of heuristics in practice in five sites: one general practice, one community nursing team, one hospital ward and two palliative care teams working in the community. Phase 3 will evaluate and further refine the toolkit of heuristics through group interviews, online questionnaires and semistructured interviews. Ethics and dissemination This study has received ethical approval from a local NHS research ethics committee (Rec ref: 15/LO/0156). The findings of this study will be presented in peer-reviewed publications and national and international conferences. PMID:26338688

  12. Communication between physicians and nurses as a target for improving end-of-life care in the intensive care unit: challenges and opportunities for moving forward.

    PubMed

    Puntillo, Kathleen A; McAdam, Jennifer L

    2006-11-01

    Our objective was to discuss obstacles and barriers to effective communication and collaboration regarding end-of-life issues between intensive care unit nurses and physicians. To evaluate practical interventions for improving communication and collaboration, we undertook a systematic literature review. An increase in shared decision making can result from a better understanding and respect for the perspectives and burdens felt by other caregivers. Intensive care unit nurses value their contributions to end-of-life decision making and want to have a more active role. Increased collaboration and communication can result in more appropriate care and increased physician/nurse, patient, and family satisfaction. Recommendations for improvement in communication between intensive care unit physicians and nurses include use of joint grand rounds, patient care seminars, and interprofessional dialogues. Communication interventions such as use of daily rounds forms, communication training, and a collaborative practice model have shown positive results. When communication is clear and constructive and practice is truly collaborative, the end-of-life care provided to intensive care unit patients and families by satisfied and engaged professionals will improve markedly.

  13. Ethical reflections on end-of-life signs and symptoms in the intensive care setting: a place for neuromuscular blockers?

    PubMed Central

    2014-01-01

    The death of a loved one is often an ordeal and a tragedy for those who witness it, as death is not merely the end of a life, but also the end of an existence, the loss of a unique individual who is special and irreplaceable. In some situations, end-of-life signs, such as agonal gasps, can be an almost unbearable “sight” because the physical manifestations are hard to watch and can lead to subjective interpretation and irrational fears. Ethical unease arises as the dying patient falls prey to death throes and to the manifestations of ebbing life and the physician can only stand by and watch. From this point on, medicine can put an end to suffering by the use of neuromuscular blockade, but in so doing life ceases at the same time. It is difficult, however, not to respond to the distress of loved ones and caregivers. The ethical problem then becomes the shift from the original ethical concern, i.e. the dying patient, to the patient’s loved ones. Is such a rupture due to a difference in nature or a difference in degree, given that the dying patient remains a person and not a thing as long as the body continues to lead its own life, expressed through movement and sound? Because there cannot be any simple and unequivocal answer to this question, the SRLF Ethics Commission is offering ethical reflections on end-of-life signs and symptoms in the intensive care setting, and on the use of neuromuscular blockade in this context, with presentations on the subject by two philosophers and members of the SRLF Ethics Commission, Ms Lise Haddad and Prof Dominique Folscheid. The SRLF Ethics Commission hopes to provide food for thought for everyone on this topic, which undoubtedly calls for further contributions, the aim being not to provide ready-made solutions or policy, but rather to allow everyone to ponder this question in all conscience. PMID:25045580

  14. Ethical reflections on end-of-life signs and symptoms in the intensive care setting: a place for neuromuscular blockers?

    PubMed

    Daubin, Cédric; Haddad, Lise; Folscheid, Dominique; Boyer, Alexandre; Chalumeau-Lemoine, Ludivine; Guisset, Olivier; Hubert, Philippe; Pillot, Jérôme; Robert, René; Dreyfuss, Didier

    2014-01-01

    The death of a loved one is often an ordeal and a tragedy for those who witness it, as death is not merely the end of a life, but also the end of an existence, the loss of a unique individual who is special and irreplaceable. In some situations, end-of-life signs, such as agonal gasps, can be an almost unbearable "sight" because the physical manifestations are hard to watch and can lead to subjective interpretation and irrational fears. Ethical unease arises as the dying patient falls prey to death throes and to the manifestations of ebbing life and the physician can only stand by and watch. From this point on, medicine can put an end to suffering by the use of neuromuscular blockade, but in so doing life ceases at the same time. It is difficult, however, not to respond to the distress of loved ones and caregivers. The ethical problem then becomes the shift from the original ethical concern, i.e. the dying patient, to the patient's loved ones. Is such a rupture due to a difference in nature or a difference in degree, given that the dying patient remains a person and not a thing as long as the body continues to lead its own life, expressed through movement and sound? Because there cannot be any simple and unequivocal answer to this question, the SRLF Ethics Commission is offering ethical reflections on end-of-life signs and symptoms in the intensive care setting, and on the use of neuromuscular blockade in this context, with presentations on the subject by two philosophers and members of the SRLF Ethics Commission, Ms Lise Haddad and Prof Dominique Folscheid. The SRLF Ethics Commission hopes to provide food for thought for everyone on this topic, which undoubtedly calls for further contributions, the aim being not to provide ready-made solutions or policy, but rather to allow everyone to ponder this question in all conscience.

  15. Use and Predictors of End-of-Life Care Among HIV Patients in a Safety Net Health System

    PubMed Central

    Rhodes, Ramona L.; Nazir, Fiza; Lopez, Sonya; Xuan, Lei; Nijhawan, Ank E.; Alexander-Scott, Nicole E.; Halm, Ethan A.

    2015-01-01

    Context Though highly active anti-retroviral therapy (HAART) has improved survival among many HIV patients, there are still those with advanced illness and limited access to care who may benefit from palliative care and hospice. Objectives To examine completion of advance directives, use of palliative care, and enrollment in hospice among HIV patients who receive care at an urban safety net hospital. Methods This was a retrospective cohort study of HIV patients in a large, urban safety net hospital in 2010. Physicians abstracted data from the electronic medical record on patient and clinical factors and end-of-life care use. Logistic regression examined predictors of hospice use. Results Overall, 367 HIV patients identified electronically by ICD-9 code were hospitalized in 2010. The mean age was 42 years and 57% were African American. Though 28% died, only 6% of the sample received palliative care consultation, and 6% of the sample enrolled in hospice. Those who received hospice had lower albumin levels (adjusted odds ratio (AOR) 4.53, 95% confidence interval (CI) 1.19, 17.34), had received palliative care (AOR 9.73, 95% CI 2.10, 45.09), and completed an advance directive (AOR 16.33, 95% CI 4.23, 61.68). Of those patients who received hospice, the mean time to death after enrollment was 11 days. Conclusion Among an urban cohort of HIV patients, the rates of advance directive completion, palliative care use, and hospice use were low. Despite advancements in the treatment of HIV, many patients with advanced illness may benefit from palliative care and hospice services. Advances should be made in identifying those patients earlier in their disease trajectories. PMID:26384554

  16. Clinical review: The role of the intensivist and the rapid response team in nosocomial end-of-life care

    PubMed Central

    2013-01-01

    In-hospital end-of-life care outside the ICU is a new and increasing aspect of practice for intensive care physicians in countries where rapid response teams have been introduced. As more of these patients die from withdrawal or withholding of artificial life support, determining whether a patient is dying or not has become as important to intensivists as the management of organ support therapy itself. Intensivists have now moved to making such decisions in hospital wards outside the boundaries of their usual closely monitored environment. This strategic change may cause concern to some intensivists; however, as custodians of the highest technology area in the hospital, intensivists are by necessity involved in such processes. Now, more than ever before, intensive care clinicians must consider the usefulness of key concepts surrounding nosocomial death and dying and the importance and value of making a formal diagnosis of dying in the wards. In this article, we assess the conceptual background, reference points, challenges and implications of these emerging aspects of intensive care medicine. PMID:23672813

  17. Clinical review: the role of the intensivist and the rapid response team in nosocomial end-of-life care.

    PubMed

    Hilton, Andrew K; Jones, Daryl; Bellomo, Rinaldo

    2013-04-26

    In-hospital end-of-life care outside the ICU is a new and increasing aspect of practice for intensive care physicians in countries where rapid response teams have been introduced. As more of these patients die from withdrawal or withholding of artificial life support, determining whether a patient is dying or not has become as important to intensivists as the management of organ support therapy itself. Intensivists have now moved to making such decisions in hospital wards outside the boundaries of their usual closely monitored environment. This strategic change may cause concern to some intensivists; however, as custodians of the highest technology area in the hospital, intensivists are by necessity involved in such processes. Now, more than ever before, intensive care clinicians must consider the usefulness of key concepts surrounding nosocomial death and dying and the importance and value of making a formal diagnosis of dying in the wards. In this article, we assess the conceptual background, reference points, challenges and implications of these emerging aspects of intensive care medicine.

  18. Improving confidence and competence of healthcare professionals in end-of-life care: an evaluation of the ‘Transforming End of Life Care’ course at an acute hospital trust

    PubMed Central

    Robinson, Vicky; Klass, Lara; Khan, Shaheen; George, Rob; Shepherd, Kate; Burman, Rachel; Koffman, Jonathan

    2016-01-01

    Background UK policymakers, clinicians and public wish to see improvements in end-of-life care (EoLC). However, healthcare professionals’ skills and knowledge to deliver high-quality care are often lacking. Since May 2012, palliative care staff in an inner-city tertiary hospital have run a 2-day Transforming End of Life Care (TEoLC) course to improve EoLC confidence, and competence among hospital and community staff. Aim To evaluate course participants’ self-rated confidence, competence and knowledge of EoLC topics. Evaluation design A before-and-after design using self-completion questionnaires, precourse and postcourse. 14 self-assessment questions examined confidence, understanding and knowledge of EoLC topics. Mean change scores and paired t tests were calculated and free-text responses analysed thematically. Participants 236 staff members completed the course between May 2012 and April 2014. 42% worked in hospitals and 55% in the community; the most frequent staff roles were qualified nurses (49%), senior nurses (16%) and general practitioners (15%). Results All 14 self-assessment topics improved significantly (p<0.001); most improved was ‘understanding and implementing Fast Track discharge’. Qualitative data showed increased knowledge and confidence in EoLC, particularly in communication, commitment to team work and holistic care. Overall, 217 (92%) participants would recommend the course and 215 (98%) indicated it would influence their practice. Conclusions The TEoLC course improved participants’ self-rated confidence, competence and knowledge in EoLC. Findings have utility beyond the UK in light of the international policy recommendations to improve the palliative care skills of generalist healthcare providers. PMID:26597902

  19. [Survey report on end-of-life care for ALS patients of ALS physicians in Japan].

    PubMed

    Ogino, Mieko

    2010-11-01

    In March 2009 we sent out the questionnaire to the 4,478 board certified neurologist to ask about the palliative care in ALS. 1,495 anonymous responses (33%) have been returned. 21% of the respondents prescribe morphine, which shows a drastic increase from the 14% in the 2007 survey. However, 77% of them had only less than 5 patients, 47% of them studied and trained themselves. It illustrates that most of the neurologists are not well experienced with morphine, and that they are isolated in practice. However, 47% of the respondents answer that they would prescribe morphine whether or not the national insurance pays. As for the withdrawal of the permanent ventilation, 21% of the respondents were asked by their patients to turn off the ventilation. While 24% of the respondents believe that the withdrawal right not should be promoted, 46% believe that such right should be granted if the decision made by the patient and/or his/her family members can explicitly be recognized. The result illustrates that the physicians are also divided. It may be the time to lay the foundation for the Japanese ALS physicians to discuss openly and candidly together to deal with the wants and wishes of their patients.

  20. Multicultural long-term care nurses’ perceptions of factors influencing patient dignity at the end of life.

    PubMed

    Periyakoil, Vyjeyanthi S; Stevens, Marguerite; Kraemer, Helena

    2013-03-01

    The goal of this mixed-methods study was to characterize the perceptions of multicultural long-term care nurses about patient dignity at the end-of-life (EOL). The study was conducted in a large, urban, long-term care (LTC) facility. Participants were 45 long-term care nurses and 26 terminally ill nursing home residents. Nurses completed an openended interview about their perceptions of the concept of dying with dignity, and the data were analyzed using grounded theory methods. Main themes identified as promoting resident dignity at the EOL included treating them with respect, helping them prepare for the EOL, promoting shared decision-making, and providing high-quality care. The nurses’ cultural and religious backgrounds influenced their perceptions of what constitutes dignity-conserving care. Foreign-born nurses stressed the need for EOL rituals, but this was strikingly absent in the statements of U.S.-born nurses. Foreign-born Catholic nurses stated that the dying experience should not be altered using analgesics to relieve suffering or by attempts to hasten death by forgoing curative therapy or by other means. Nurses and terminally ill individuals completed the Dignity Card-sort Tool (DCT). A comparison of the DCT responses of the LTC nurses cohort with those of the terminally ill participants revealed that the nurses felt patient dignity was eroded when patient wishes were not followed and when they were treated without respect. In contrast, dying LTC residents felt that poor medical care and loss of ability to choose care options were the most important factors leading to erosion of dignity.

  1. An exploratory study of interprofessional collaboration in end-of-life decision-making beyond palliative care settings.

    PubMed

    Ho, Anita; Jameson, Kim; Pavlish, Carol

    2016-11-01

    As healthcare delivery becomes increasingly interprofessional, it is imperative to identify opportunities for effective collaboration and coordination of care. Drawing on a Canadian qualitative study that adopted a constant comparative method based on the grounded theory approach, we report how healthcare providers' (HCPs) personal experiences and professional roles intersect with system factors in hindering or enhancing their ability to support patients and families in planning for end-of-life (EOL) care. We used a criterion-based sampling strategy and sought HCPs who had direct experience engaging patients and families in complex healthcare decisions on: (1) initiating, withholding, or withdrawing treatment; (2) care planning; and/or (3) discharge planning. Interviews sought to understand what HCPs perceived as individual, (inter)professional, and system factors that might hinder, promote, or enhance support for patients/families. We present four major intersecting themes from in-depth interviews with 28 HCPs across acute, long-term, and community care settings that represent three barriers and one facilitator: discomfort with death and dying, confusion about role responsibility, lack of coordinated care, and importance of interprofessional teamwork. Attending to system power hierarchy, we explore interprofessional strategies to support patients' and families' care experiences and promote team-based decision-making. We recommend an interprofessional team approach to facilitate EOL decision-making across care settings and before death becomes imminent. Increasing educational initiatives and developing tools that focus on interprofessional collaboration may help HCPs to understand each other's roles and perspectives, so that they can work together to provide a more coherent and coordinated approach to EOL decision-making.

  2. Electronic palliative care co-ordination system: an electronic record that supports communication for end-of-life care - a pilot in Richmond, UK.

    PubMed

    Millington-Sanders, Catherine; Nadicksbernd, J J; O'Sullivan, Caoimhe; Morgan, Tom; Raleigh, Anna; Yeun, Peter; Ormerod, Georgina

    2013-01-01

    Most people prefer to die at home, however, the majority die in an acute hospital. Supporting a patient in their preferred place of care may be aided by exchange of information across sectors. Richmond piloted an electronic palliative care coordination system (EPaCCS) to enhance interprofessional communication for end-of-life care. One such EPaCCS is the Coordinate My Care (CMC) hosted by the Royal Marsden NHS Foundation Trust, now supported across London. It focused clinicians on having advance care planning conversations with patients and their carers and then documenting the outcome onto an electronic web-based record that can be shared with key healthcare professionals.

  3. Electronic palliative care co-ordination system: an electronic record that supports communication for end-of-life care - a pilot in Richmond, UK.

    PubMed

    Millington-Sanders, Catherine; Nadicksbernd, J J; O'Sullivan, Caoimhe; Morgan, Tom; Raleigh, Anna; Yeun, Peter; Ormerod, Georgina

    2012-01-01

    Most people prefer to die at home, however, the majority die in an acute hospital. Supporting a patient in their preferred place of care may be aided by exchange of information across sectors. Richmond piloted an electronic palliative care coordination system (EPaCCS) to enhance interprofessional communication for end-of-life care. One such EPaCCS is the Coordinate My Care (CMC) hosted by the Royal Marsden NHS Foundation Trust, now supported across London. It focused clinicians on having advance care planning conversations with patients and their carers and then documenting the outcome onto an electronic web-based record that can be shared with key healthcare professionals.

  4. End of life care in the operating room for non-heart-beating donors: organization at the University Hospital of Liège.

    PubMed

    Joris, J; Kaba, A; Lauwick, S; Lamy, M; Brichant, J-F; Damas, P; Ledoux, D; Damas, F; Lambermont, B; Morimont, P; Devos, P; Delbouille, M-H; Monard, J; Hans, M-F; DeRoover, A; Honoré, P; Squifflet, J-P; Meurisse, M; Detry, O

    2011-11-01

    Non-heart-beating (NHB) organ donation has become an alternative source to increase organ supply for transplantation. A NHB donation program was implemented in our institution in 2002. As in many institutions the end of life care of the NHB donor (NHBD) is terminated in the operating room (OR) to reduce warm ischemia time. Herein we have described the organization of end of life care for these patients in our institution, including the problems addressed, the solution proposed, and the remaining issues. Emphasis is given to our protocol elaborated with the different contributors of the chain of the NHB donation program. This protocol specifies the information mandatory in the medical records, the end of life care procedure, the determination of death, and the issue of organ preservation measures before NHBD death. The persisting malaise associated with NHB donation reported by OR nurses is finally documented using an anonymous questionnaire.

  5. End-of-Life Care Decisions: Importance of Reviewing Systems and Limitations After 2 Recent North American Cases

    PubMed Central

    Burkle, Christopher M.; Benson, Jeffre J.

    2012-01-01

    Two recent and unfortunate North American cases involving end-of-life treatment highlight the difficulties surrounding medical futility conflicts. As countries have explored the greater influence that patients and their representatives may play on end-of-life treatment decisions, the benefits and struggles involved with such a movement must be appreciated. These 2 cases are used to examine the present systems existing in the United States and Canada for resolving end-of-life decisions, including the difficulty in defining medical futility, the role of medical ethics committees, and controversies involving surrogate decision making. PMID:23127734

  6. Challenges to Providing End-of-Life Care to Low-Income Elders with Advanced Chronic Disease: Lessons Learned from a Model Program

    ERIC Educational Resources Information Center

    Kramer, Betty J.; Auer, Casey

    2005-01-01

    Purpose: This study explored the challenges in providing end-of-life care to low-income elders with multiple comorbid chronic conditions in a fully "integrated" managed care program, and it highlighted essential recommendations. Design and Methods: A case-study design was used that involved an extensive analysis of qualitative data from five focus…

  7. The Role of Health Care Provider Goals, Plans, and Physician Orders for Life-Sustaining Treatment (POLST) in Preparing for Conversations About End-of-Life Care.

    PubMed

    Russell, Jessica

    2016-09-01

    The Physician Orders for Life-Sustaining Treatment (POLST) is a planning tool representative of an emerging paradigm aimed at facilitating elicitation of patient end-of-life care preferences. This study assessed the impact of the POLST document on provider goals and plans for conversations about end-of-life care treatment options. A 2 (POLST: experimental, control) × 3 (topic of possible patient misunderstanding: cardiopulmonary resuscitation, medical intervention, artificially administered nutrition) experimental design was used to assess goals, plan complexity, and strategies for plan alterations by medical professionals. Findings suggested that the POLST had little impact on plan complexity or reaction time with initial plans. However, preliminary evidence suggested that the utility of the POLST surfaced with provider responses to patient misunderstanding, in which differences in conditions were identified. Significant differences in goals reported as most important in driving conversational engagement emerged. Implications for findings are discussed.

  8. Preparing for the End of Life

    MedlinePlus

    ... care focus on comfort and quality of life. Hospice Care Click for more information One of the ways ... before they need end-of-life or hospice care. Unlike hospice care, palliative care may be used for as ...

  9. Measuring the quality of structure and process in end-of-life care from the bereaved family perspective.

    PubMed

    Morita, Tatsuya; Hirai, Kei; Sakaguchi, Yukihiro; Maeyama, Etsuko; Tsuneto, Satoru; Shima, Yasuo

    2004-06-01

    Measurement of the structure/process of care is the first step in improving end-of-life care. The primary aim of this study was to psychometrically validate an instrument for directly measuring the bereaved family's perception of the necessity for improvement in structural/procedural aspects of palliative care. Different sets of questionnaires were sent to 800 and 425 families who lost family members at one of 70 certified palliative care units in Japan in the development and validation phases, respectively, and 281 families of the latter group in the follow-up phase. The participants were requested to fill out a newly-developed Care Evaluation Scale (CES), along with outcome measures (the perceived experience and satisfaction levels) and potential covariates (the degree of expectation, the Center for Epidemiologic Studies Depression Scale, and the Social Desirability Scale). We obtained 485, 310, and 202 responses in the development, validation, and follow-up phases (response rates: 64%, 75%, and 72%, respectively). The 28-item CES had an overall Cronbach's coefficient alpha of 0.98; the intra-class correlation coefficient in the test-retest examination was 0.57. A confirmatory factor analysis revealed 10 subscales: physical care (by physicians, by nurses), psycho-existential care, help with decision-making (for patients, for family), environment, family burden, cost, availability, and coordination/consistency. The CES subscales were only moderately correlated with the perceived-experience and satisfaction levels of corresponding areas (r=0.36-0.52 and 0.39-0.60, respectively). The CES score was not significantly associated with the degree of expectation, the changes of depression, or the Social Desirability Scale. The CES is a useful tool to measure the bereaved family's perception of the necessity for improvement in structural/procedural aspects of palliative care. The advantages of the CES are: 1) it specifically evaluates the structure and process of care, 2

  10. Nationwide monitoring of end-of-life care via the Sentinel Network of General Practitioners in Belgium: the research protocol of the SENTI-MELC study

    PubMed Central

    Van den Block, Lieve; Van Casteren, Viviane; Deschepper, Reginald; Bossuyt, Nathalie; Drieskens, Katrien; Bauwens, Sabien; Bilsen, Johan; Deliens, Luc

    2007-01-01

    Background End-of-life care has become an issue of great clinical and public health concern. From analyses of official death certificates, we have societal knowledge on how many people die, at what age, where and from what causes. However, we know little about how people are dying. There is a lack of population-based and nationwide data that evaluate and monitor the circumstances of death and the care received in the final months of life. The present study was designed to describe the places of end-of-life care and care transitions, the caregivers involved in patient care and the actual treatments and care provided to dying patients in Belgium. The patient, residence and healthcare characteristics associated with these aspects of end-of-life care provision will also be studied. In this report, the protocol of the study is outlined. Methods/Design We designed a nationwide mortality follow-back study with data collection in 2005 and 2006, via the nationwide Belgian Sentinel Network of General Practitioners (GPs) i.e. an existing epidemiological surveillance system representative of all GPs in Belgium, covering 1.75% of the total Belgian population. All GPs were asked to report weekly, on a standardized registration form, every patient (>1 year) in their practice who had died, and to identify patients who had died "non-suddenly." The last three months of these patients' lives were surveyed retrospectively. Several quality control measures were used to ensure data of high scientific quality. Discussion In 2005 and 2006, respectively 1385 and 1305 deaths were identified of which 66% and 63% died non-suddenly. The first results are expected in 2007. Via this study, we will build a descriptive epidemiological database on end-of-life care provision in Belgium, which might serve as baseline measurement to monitor end-of-life care over time. The study will inform medical practice as well as healthcare authorities in setting up an end-of-life care policy. We publish the

  11. The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: a meta-study of qualitative research.

    PubMed

    Edwards, A; Pang, N; Shiu, V; Chan, C

    2010-12-01

    Spirituality and spiritual care are gaining increasing attention but their potential contribution to palliative care remains unclear. The aim of this study was to synthesize qualitative literature on spirituality and spiritual care at the end of life using a systematic ('meta-study') review. Eleven patient articles and eight with healthcare providers were included, incorporating data from 178 patients and 116 healthcare providers, mainly from elderly White and Judaeo-Christian origin patients with cancer. Spirituality principally focused on relationships, rather than just meaning making, and was given as a relationship. Spirituality was a broader term that may or may not encompass religion. A 'spirit to spirit' framework for spiritual care-giving respects individual personhood. This was achieved in the way physical care was given, by focusing on presence, journeying together, listening, connecting, creating openings, and engaging in reciprocal sharing. Affirmative relationships supported patients, enabling them to respond to their spiritual needs. The engagement of family caregivers in spiritual care appears underutilized. Relationships formed an integral part of spirituality as they were a spiritual need, caused spiritual distress when broken and were the way spiritual care was given. Barriers to spiritual care include lack of time, personal, cultural or institutional factors, and professional educational needs. By addressing these, we may make an important contribution to the improvement of patient care towards the end of life.

  12. Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe

    PubMed Central

    Daveson, Barbara A.; Alonso, Juan P.; Calanzani, Natalia; Ramsenthaler, Christina; Gysels, Marjolein; Antunes, Barbara; Moens, Katrien; Groeneveld, Esther I.; Albers, Gwenda; Finetti, Silvia; Pettenati, Francesca; Bausewein, Claudia; Higginson, Irene J.; Harding, Richard; Deliens, Luc; Toscani, Franco; Ferreira, Pedro L.; Ceulemans, Lucas; Gomes, Barbara

    2014-01-01

    Background: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. Methods: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. Conclusions: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery. PMID:23487548

  13. End of Life: An Overview

    ERIC Educational Resources Information Center

    Toner, Mary Ann; Shadden, Barbara B.

    2012-01-01

    Speech-language pathologists (SLPs) provide services to patients confronting the end of life (EOL) in a variety of settings. Instead of targeting improvement of health or sustaining life, EOL services focus primarily on quality of life. Although SLPs may not consider themselves core members of the health care team providing EOL services, the…

  14. Building on Individual, State, and Federal Initiatives for Advance Care Planning, an Integral Component of Palliative and End-of-Life Cancer Care

    PubMed Central

    Epstein, Andrew S.; Volandes, Angelo E.; O'Reilly, Eileen M.

    2011-01-01

    Federal and state provisions for advance care planning—the process by which patients, families, and medical professionals plan for future and, in particular, end-of-life care—continue to receive attention. Such planning remains an integral component of palliative care, complementing the recognition and treatment of pain and other symptoms that patients with advanced malignancies and their families encounter. Historically, advance care planning interventions (particularly those involving advance directives) have been unable to consistently demonstrate positive outcomes for patients with life-threatening illnesses. However, more recent literature, including that on patients with cancer, illustrates that both patients and caregivers report improved quality of life and less distress after discussions with their health care teams about end-of-life care. Herein, we discuss recent federal and state public policy that focuses on advance care planning, suggesting the promise for care delivery improvements and the means by which existing barriers might be surmounted. These care delivery issues apply to several disease states but are particularly pertinent to the adult oncology setting. PMID:22379415

  15. Mixed Methods Research in the Development and Evaluation of Complex Interventions in Palliative and End-of-Life Care: Report on the MORECare Consensus Exercise

    PubMed Central

    Preston, Nancy; Evans, Catherine J.; Grande, Gunn; Short, Vicky; Benalia, Hamid; Higginson, Irene J.; Todd, on behalf of MORECare, Chris

    2013-01-01

    Abstract Background: Complex interventions are common in palliative and end-of-life care. Mixed methods approaches sit well within the multiphase model of complex intervention development and evaluation. Generic mixed methods guidance is useful but additional challenges in the research design and operationalization within palliative and end-of-life care may have an impact on the use of mixed methods. Objective: The objective of the study was to develop guidance on the best methods for combining quantitative and qualitative methods for health and social care intervention development and evaluation in palliative and end-of-life care. Methods: A one-day workshop was held where experts participated in facilitated groups using Transparent Expert Consultation to generate items for potential recommendations. Agreement and consensus were then sought on nine draft recommendations (DRs) in a follow-up exercise. Results: There was at least moderate agreement with most of the DRs, although consensus was low. Strongest agreement was with DR1 (usefulness of mixed methods to palliative and end-of-life care) and DR5 (importance of attention to respondent burden), and least agreement was with DR2 (use of theoretical perspectives) and DR6 (therapeutic effects of research interviews). Narrative comments enabled recommendation refinement. Two fully endorsed, five partially endorsed, and two refined DRs emerged. The relationship of these nine to six key challenges of palliative and end-of-life care research was analyzed. Conclusions: There is a need for further discussion of these recommendations and their contribution to methodology. The recommendations should be considered when designing and operationalizing mixed methods studies of complex interventions in palliative care, and because they may have wider relevance, should be considered for other applications. PMID:24195755

  16. Barriers to Advance Care Planning at the End of Life: An Explanatory Systematic Review of Implementation Studies

    PubMed Central

    Lund, Susi; Richardson, Alison; May, Carl

    2015-01-01

    Context Advance Care Plans (ACPs) enable patients to discuss and negotiate their preferences for the future including treatment options at the end of life. Their implementation poses significant challenges. Objective To investigate barriers and facilitators to the implementation of ACPs, focusing on their workability and integration in clinical practice. Design An explanatory systematic review of qualitative implementation studies. Data sources Empirical studies that reported interventions designed to support ACP in healthcare. Web of Knowledge, Ovid MEDLINE, CINAHL, PsycINFO, British Nursing Index and PubMed databases were searched. Methods Direct content analysis, using Normalization Process Theory, to identify and characterise relevant components of implementation processes. Results 13 papers identified from 166 abstracts were included in the review. Key factors facilitating implementation were: specially prepared staff utilizing a structured approach to interactions around ACPs. Barriers to implementation were competing demands of other work, the emotional and interactional nature of patient-professional interactions around ACPs, problems in sharing decisions and preferences within and between healthcare organizations. Conclusions This review demonstrates that doing more of the things that facilitate delivery of ACPs will not reduce the effects of those things that undermine them. Structured tools are only likely to be partially effective and the creation of a specialist cadre of ACP facilitators is unlikely to be a sustainable solution. The findings underscore both the challenge and need to find ways to routinely incorporate ACPs in clinical settings where multiple and competing demands impact on practice. Interventions most likely to meet with success are those that make elements of Advance Care Planning workable within complex and time pressured clinical workflows. PMID:25679395

  17. Addressing end of life care issues in a tertiary treatment centre: lessons learned from surveying parents' experiences.

    PubMed

    Midson, Rosie; Carter, Bernie

    2010-03-01

    Much of the work in children's hospitals is rightly focused on treatments aimed towards cure but this means that death is often seen as a failure and, as such, it may not be discussed or acknowledged as a possibility until very late in a child's stay in hospital. However, this reluctance can deny the child and their family the opportunity to be informed, prepare and make choices. A survey of the care received by parents whose child had died in a children's tertiary treatment centre led to a greater understanding of the parents' experiences and the ways in which care could be enhanced. Parents talked of the way in which the geography of the hospital could be disruptive and dislocating and yet they often had no place to be alone or in private. Communication was identified as a core issue with many parents being positive about the quality and timing of communication. However, other parents expressed a preference for more preparation about the possibility that their child might die. Some parents had positive experiences of follow-up visits after their child's death, whilst others remained frustrated and some felt this visit had made them re-live the experiences. The importance of kind, supportive and consistent care was clearly evidenced by the parents when they spoke about their feelings and emotions. The findings helped to develop and implement an End of Life Care Pathway and a pathway tool which aimed to enhance parents' experiences and to improve care. A further survey was triggered by the concern that the pathway was not being fully utilized and it became apparent that, despite the tool, staff were still reluctant to provide anticipatory guidance, even though many practical aspects of care scored well. The need for good communication that prepares parents for the eventuality that their child might or will die is one of the clearest lessons from the second survey. This is important as anticipatory guidance opens up parents - and children's - choices, and their

  18. Understanding end-of-life caring practices in the emergency department: developing Merleau-Ponty's notions of intentional arc and maximum grip through praxis and phronesis.

    PubMed

    Chan, Garrett K

    2005-01-01

    The emergency department (ED) is a fast-paced, highly stressful environment where clinicians function with little or suboptimal information and where time is measured in minutes and hours. In addition, death and dying are phenomena that are often experienced in the ED. Current end-of-life care models, based on chronic illness trajectories, may be difficult to apply in the ED. A philosophical approach examining end-of-life care may help us understand how core medical and nursing values are embodied as care practices and as ethical comportment. The integration of Aristotle's notions of phronesis and praxis with Merleau-Ponty's ontological notions of intentional arc and maximum grip in the context of the culture and practices of the ED offers a unique view of clinical and ethical practice at the end-of-life in the emergency setting. Caring for people at the end-of-life calls us to act virtuously based on previous experience, meanings and local practices. The maximum grip of the ultimate particulars of the situation combined with one's experiential and theoretical knowledge opens up situated possibilities for the expert clinician.

  19. The End-of-Life Experience in Long-Term Care: Five Themes Identified from Focus Groups with Residents, Family Members, and Staff

    ERIC Educational Resources Information Center

    Munn, Jean C.; Dobbs, Debra; Meier, Andrea; Williams, Christianna S.; Biola, Holly; Zimmerman, Sheryl

    2008-01-01

    Purpose: We designed this study to examine the end-of-life (EOL) experience in long-term care (LTC) based on input from key stakeholders. Design and Methods: The study consisted of 10 homogeneous focus groups drawn from a purposive sample of LTC residents (2 groups; total n = 11), family caregivers (2 groups; total n = 19), paraprofessional staff…

  20. End-of-Life Care and Dying: Issues Raised by Staff Supporting Older People with Intellectual Disability in Community Living Services

    ERIC Educational Resources Information Center

    Wiese, Michele; Stancliffe, Roger J.; Balandin, Susan; Howarth, Glennys; Dew, Angela

    2012-01-01

    Background: The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services. Materials and Methods: Focus groups and individual interviews were conducted, guided by grounded theory methodology. Results: The current status of…

  1. Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis.

    PubMed

    Ngwenya, Nothando; Kenten, Charlotte; Jones, Louise; Gibson, Faith; Pearce, Susie; Flatley, Mary; Hough, Rachael; Stirling, L Caroline; Taylor, Rachel M; Wong, Geoff; Whelan, Jeremy

    2017-01-11

    To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers.

  2. Differential impacts of care-giving across three caregiver groups in Canada: end-of-life care, long-term care and short-term care.

    PubMed

    Williams, Allison M; Wang, Li; Kitchen, Peter

    2014-03-01

    Using data from Statistic Canada's General Social Survey Cycle 21 (GSS 2007), this study explores whether differences exist in the impacts of care-giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end-of-life (EOL) care (n = 471); (ii) those providing long-term care (more than 2 years) for someone with a chronic condition or long-term illness (n = 2722); and (iii) those providing short-term care (less than 2 years) for someone with a chronic condition or long-term illness (n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care-giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of 'fair or poor' self-assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care-giving, more so than both short-term and long-term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care-giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long-term or short-term caregivers. This provides the evidence for the assertion that EOL care-giving is the most intense type of care-giving, potentially causing the greatest caregiver burden

  3. Spouses' Effectiveness as End-of-Life Health Care Surrogates: Accuracy, Uncertainty, and Errors of Overtreatment or Undertreatment

    ERIC Educational Resources Information Center

    Moorman, Sara M.; Carr, Deborah

    2008-01-01

    Purpose: We document the extent to which older adults accurately report their spouses' end-of-life treatment preferences, in the hypothetical scenarios of terminal illness with severe physical pain and terminal illness with severe cognitive impairment. We investigate the extent to which accurate reports, inaccurate reports (i.e., errors of…

  4. [Life history interview--an effective approach to building positive doctor-patient relations and guide to proper end of life home care].

    PubMed

    Yamanashi, Hirotomo; Yamanashi, Irotomo; Miyamori, Tadashi

    2010-12-01

    The acclaimed psychiatrist, Arthur Kleinman, proposed Life History Interview as a way of enabling doctors to truly listen to a patient who is suffering from chronic disease. Two cases of terminally ill patients were carried out with Life History Interview. When speaking of the end of life home care, Life History Interview is an effective approach in building positive doctor-patient relations in the early stages. It truly allows for a good foundation for providing a proper care.

  5. Factors of Good Collaboration in Home-Based End-of-Life Care: A Questionnaire Survey of Japanese Home Care Nurses, Home Helpers, and Care Managers.

    PubMed

    Yamamoto-Mitani, Noriko; Igarashi, Ayumi; Noguchi-Watanabe, Maiko; Takemura, Yukie; Suzuki, Miho

    2015-01-01

    Good interprofessional work (IPW) is essential to provide quality home-based end-of-life (EOL) care. The purpose of this study was to explore the factors of "good collaboration," as evaluated separately by home care nurses (HNs), home helpers (HHs), and care managers (CMs). The relationship was examined between their evaluation of good collaboration and their recent actual experience of interprofessional collaborative work for a home-based EOL case. The questionnaire was returned nationwide by 378 HNs, 305 HHs, and 476 CMs, and data were collected on 177 EOL cases from HNs, 84 cases from HHs, and 123 cases from CMs. Evaluation of good collaboration by HNs was associated with working with a CM with whom they had multiple collaborative experiences, the client being independent for their toileting until just before dying, and sharing information regarding the client's EOL decision with an HH 1 month before dying. Evaluation of good collaboration by HHs was associated with working at an agency that collaborated with fewer CM agencies and working at an agency that allowed staff to visit dying clients. Evaluation of good collaboration by CMs was associated only with the client being dependent for toileting. Our results highlighted the characteristics of how each professional seeks to collaborate depending on their preparedness, contexts, and resultant expectations toward other professionals when entering the IPW for home-based EOL care. To promote good IPW for home-based EOL care further, professionals need to understand these differences among ourselves and try to meet others' expectations.

  6. Comparison of end-of-life care for older people living at home and in residential homes: a mortality follow-back study among GPs in the Netherlands

    PubMed Central

    Penders, Yolanda WH; Van den Block, Lieve; Donker, Gé A; Deliens, Luc; Onwuteaka-Philipsen, Bregje

    2015-01-01

    Background The proportion of older people is increasing, therefore their place of residence and place of care at the end of life are becoming increasingly important. Aim To compare aspects of end-of-life care among older people in residential homes and home settings in the Netherlands. Design and setting Nationwide representative mortality follow-back study among GPs in the Netherlands. Method The study included patients aged ≥65 years who died non-suddenly, whose longest place of residence in their last year of life was at home or in a residential home (n = 498). Differences were analysed using Pearson’s χ2 test, Mann-Whitney U tests, and multivariate logistic regression. Results Controlling for the differences between the populations in home settings and residential homes, no differences were found in treatment goals, communication about end-of-life care, or use of specialised palliative care between the two settings. However, people living in a residential home were more likely to have received palliative care from a GP than people living at home (OR 2.84, 95% confidence interval [CI] = 1.41 to 5.07). In residential homes, people more often experienced no transfer between care settings (OR 2.76, 95% CI = 1.35 to 5.63) and no hospitalisations (OR 2.2, 95% CI = 1.04 to 4.67) in the last 3 months of life, and died in hospital less often (OR 0.78, 95% CI = 0.63 to 0.97) than those people living at home. Conclusion Despite similar treatment goals, care in residential homes seems more successful in avoiding transfers and hospitalisation at the end of life. Especially since older people are encouraged to stay at home longer, measures should be taken to ensure they are not at higher risk of transfers and hospitalisations in this setting. PMID:26500319

  7. Experience-based design, co-design and experience-based co-design in palliative and end-of-life care.

    PubMed

    Borgstrom, Erica; Barclay, Stephen

    2017-02-16

    Experience-based design, co-design, and experience-based co-design can be used within healthcare to design services that improve the patient, carer and staff experience of the services. As palliative and end-of-life care centrally value person-centred care, we believe that service designers, commissioners and those tasked with making quality improvements will be interested in this growing field. This paper outlines these approaches-with a particular emphasis on experience-based co-design-and describes how they are and can be used within palliative and end-of-life care. Based on a rapid review and several case studies, this article highlights the key lessons learnt from previous projects using these approaches and discusses areas for improvement in current reporting of service design projects.

  8. Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study

    PubMed Central

    2010-01-01

    Background Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients. Methods/Design Mortality followback survey (with a nested case-control study of home vs. hospital deaths) conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death). Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified. Discussion Collecting data on end-of-life care retrospectively from

  9. A social work practice reflection on issues arising for LGBTI older people interfacing with health and residential care: rights, decision making and end-of-life care.

    PubMed

    Duffy, Francis; Healy, John Paul

    2014-01-01

    This article is a social work practice reflection on issues arising for lesbian, gay, bisexual, transgender, and intersex (LGBTI) older people interfacing with health and residential care in Australia; focusing on clients, families, and carers in relation to rights, decision making, and end-of-life care. The article explores relevant case examples from social work practice in a health and residential care setting that highlight some specific complexities of working with this client group. This article brings greater attention to issues arising for older LBGTI when interfacing with health and residential care and has the potential to improve practice for social workers and other health professionals and improve outcomes for LGBTI older people.

  10. Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach

    PubMed Central

    Jones, Louise; Candy, Bridget; Davis, Sarah; Elliott, Margaret; Gola, Anna; Harrington, Jane; Kupeli, Nuriye; Lord, Kathryn; Moore, Kirsten; Scott, Sharon; Vickerstaff, Victoria; Omar, Rumana Z; King, Michael; Leavey, Gerard; Nazareth, Irwin; Sampson, Elizabeth L

    2015-01-01

    Background: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. Aim: To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia. PMID:26354388

  11. End of life issues in a palliative care framework for a critically ill adult African American with cystic fibrosis: a case study.

    PubMed

    McNeal, Gloria J

    2002-01-01

    The purpose of this investigation, using case study methodology, was to explore the end of life issues and to give meaning to the biopsychosocial experiences of the study participant, an adult African American female patient diagnosed with Cystic Fibrosis. Two theoretical frameworks were used to guide the investigation of the study: Kubler-Ross Model of the Stages of Dying and the Conceptual Framework for Palliative Care Practice. Data analysis included review of medical records and patient journals, interviews, observations and clinical assessment. The findings indicated that end of life issues can be articulated within the context of a palliative care framework and that the biopsychosocial experiences of the dying person acquire meaning when situated within life history, ethical values and metaphysical belief systems.

  12. Home care for children with multiple complex chronic conditions at the end of life: The choice of hospice versus home health

    PubMed Central

    Lindley, Lisa C.; Mixer, Sandra J.; Mack, Jennifer W.

    2016-01-01

    Families desire to bring their children home at end of life, and this creates a variety of unique care needs at home. This study analyzed the child and family factors associated with hospice versus home health care use in the last year of life among children with multiple complex chronic conditions. Using the Andersen Behavioral Healthcare Utilization Model, predisposing, enabling, and need factors of the child and family were shown to be significant predictors of hospice and home health care use. Hospice and home health care have advantages, and families may wish to use the service that best fits their needs. PMID:27383451

  13. Home care for children with multiple complex chronic conditions at the end of life: The choice of hospice versus home health.

    PubMed

    Lindley, Lisa C; Mixer, Sandra J; Mack, Jennifer W

    2016-01-01

    Families desire to bring their children home at end of life, and this creates a variety of unique care needs at home. This study analyzed the child and family factors associated with hospice versus home health care use in the last year of life among children with multiple complex chronic conditions. Using the Andersen Behavioral Healthcare Utilization Model, the predisposing, enabling, and need factors of the child and family were shown to be significant predictors of hospice and home health care use. Hospice and home health care have advantages, and families may wish to use the service that best fits their needs.

  14. Exploring uncertainty in advance care planning in African Americans: does low health literacy influence decision making preference at end of life.

    PubMed

    Melhado, Lolita; Bushy, Angeline

    2011-11-01

    African Americans over 65 represent 3.5 of the 35.6 million Americans. Morbidity and mortality rates are highest among this group; associated with lack of resources and awareness of health problems. But health needs are the same at end of life, yet care is less than optimal. African Americans are less likely to have advance directives nonetheless desire communication, information, respect, and a trusting doctor-patient relationship. Low health literacy may contribute to this disparity. This scholarly review examines the health literacy in advance care planning and refines concepts of uncertainty in illness theory deriving a model for advance care planning in African Americans.

  15. 'I don't want to talk about it.' Raising public awareness of end-of-life care planning in your locality.

    PubMed

    Hickey, Deb; Quinn, Sharon

    2012-05-01

    The UK Department of Health's (2008) End of Life Care Strategy highlighted the need for greater public awareness around planning and the choices available as people approach the end of their life. Despite efforts to 'normalise' death and dying and recognise that they are an inevitable part of life, a taboo persists and open communication about these issues is often limited or restricted to periods of crisis. Translating national policy into meaningful local dialogue requires creative interventions that are adaptable to each community. This article explores these key themes and reports on the responses of the first 304 people to complete an end-of-life survey as part of local engagement with the general public in South West Essex regarding issues around death and dying.

  16. Perceived success in addressing end-of-life care needs of low-income elders and their families: what has family conflict got to do with it?

    PubMed

    Kramer, Betty J; Yonker, James A

    2011-01-01

    The purpose of this study was to examine the predictors of perceived success in addressing the end-of-life care needs of low-income older adults and their family members. Perceived success is defined as the clinician's subjective assessment of the extent to which end-of-life care needs of the patient and family have been met by the interdisciplinary team. The results are drawn from a larger longitudinal multimethod case study designed to understand how end-of-life care is provided to a diverse group of frail elders in an innovative, fully "integrated," managed care program. Data were generated from 120 social work surveys detailing care experiences and outcomes particular to 120 elder deaths. Significant predictors of perceived success for addressing patient needs included patient care needs (β=0.17, P≤0.05), race (β=0.19, P≤0.05), patient preferences elicited (β=0.29, P≤0.01) and honored (β=0.20, P≤0.05), and family conflict (β=-0.24, P≤0.01). Significant predictors of perceived success for addressing family needs included family care needs (β=0.30, P≤0.001), team and administrative resources (β=0.19, P≤0.01), patient preferences honored (β=0.16, P≤0.05), quality of relationship with patient (β=0.27, P≤0.001) and family (β=0.23, P≤0.01), and family conflict (β=-0.31, P≤0.001). This study provides preliminary evidence of differential correlates and predictors of perceived success for addressing patient and family needs, highlighting the detrimental influence of family conflict. Future research is needed to better understand the kinds of assessment and intervention protocols that might prevent or ameliorate conflict and enhance structures and process-of-care variables to facilitate more successful outcomes.

  17. Pain medicine and palliative care as an alternative to euthanasia in end-of-life cancer care.

    PubMed

    Erdek, Michael

    2015-05-01

    There exists support for euthanasia or physician-assisted suicide (PAS) in cases of terminal cancer. One of the premises for this approach is the goal of the alleviation of suffering. Do current means of pain control in the greater overall setting of palliative care serve as a desirable alternative? A contrast comparison may be drawn between the above approaches using both theological and medical sources to show that the enlightened use of both interventional and non-interventional pain medicine approaches in an integrated palliative care setting are a theologically grounded and medically feasible alternative to euthanasia or PAS in this population. Lay summary: Patients suffering from terminal cancer often have pain. Some have advocated euthanasia or physician-assisted suicide as a potential way of alleviating this suffering. Further examination of this topic, however, shows this approach may be essentially utilitarian and fail to consider the inherent value of human life. There has been significant development in recent years in the fields of pain medicine and palliative care, which afford alternate means of addressing suffering in this patient population.

  18. Pain medicine and palliative care as an alternative to euthanasia in end-of-life cancer care

    PubMed Central

    Erdek, Michael

    2015-01-01

    There exists support for euthanasia or physician-assisted suicide (PAS) in cases of terminal cancer. One of the premises for this approach is the goal of the alleviation of suffering. Do current means of pain control in the greater overall setting of palliative care serve as a desirable alternative? A contrast comparison may be drawn between the above approaches using both theological and medical sources to show that the enlightened use of both interventional and non-interventional pain medicine approaches in an integrated palliative care setting are a theologically grounded and medically feasible alternative to euthanasia or PAS in this population. Lay summary: Patients suffering from terminal cancer often have pain. Some have advocated euthanasia or physician-assisted suicide as a potential way of alleviating this suffering. Further examination of this topic, however, shows this approach may be essentially utilitarian and fail to consider the inherent value of human life. There has been significant development in recent years in the fields of pain medicine and palliative care, which afford alternate means of addressing suffering in this patient population. PMID:25999611

  19. Prevalence of symptoms at the end of life in an acute care hospital: a retrospective cohort study

    PubMed Central

    Kobewka, Daniel; Ronksley, Paul; McIsaac, Dan; Mulpuru, Sunita; Forster, Alan

    2017-01-01

    Background: There is currently debate over the benefits and harms of physician-assisted death. One of the factors influencing this debate is concern about symptoms in the days before death. The objective of this study was to describe the frequency of symptoms before death and determine patient characteristics associated with these symptoms. Methods: We reviewed the medical record of every patient who died at a multisite academic teaching hospital over a 3-month period. We determined the number of episodes of pain, dyspnea, agitation and nausea during the final 48 hours of life and assessed the patient and encounter characteristics associated with 2 or more episodes of symptoms. Results: A total of 480 patients died during the study period. Of these patients, 29.2% (140/480) had 2 or more symptoms in the final 48 hours of life. Higher Elixhauser comorbidity scores (relative risk [RR] 1.35, 95% confidence interval [CI] 1.23-1.49), having a family doctor (RR 2.33, 95% CI 1.02-5.38), being admitted to the medical oncology service (RR 1.51, 95% CI 1.11-2.05) and having a documented order for no resuscitation written early during the stay in hospital (RR 1.38, 95% CI 1.01-1.89) were independently associated with symptoms. Admission to intensive care was associated with fewer symptoms (RR 0.39, CI 95% 0.19-0.80). Interpretation: Symptoms are common in the final 48 hours of life, particularly in patients with multimorbidity who want limitations on the aggressiveness of their care. An integrated palliative approach is needed for select at-risk patients.

  20. Death and the Oldest Old: Attitudes and Preferences for End-of-Life Care - Qualitative Research within a Population-Based Cohort Study

    PubMed Central

    Fleming, Jane; Farquhar, Morag; Brayne, Carol; Barclay, Stephen

    2016-01-01

    Introduction Increasing longevity means more people will be dying in very old age, but little is known about the preferences of the ‘oldest old’ regarding their care at the end of life. Aims To understand very old people’s preferences regarding care towards the end of life and attitudes towards dying, to inform policy and practice. Methods Qualitative data collection for n = 42 population-based cohort study participants aged 95–101 (88% women, 42% in long-term-care): topic-guided interviews with n = 33 participants and n = 39 proxy informants, most with both (n = 30: 4 jointly + separate interviews for 26 dyads). Results Death was a part of life: these very old people mainly live day-to-day. Most were ready to die, reflecting their concerns regarding quality of life, being a nuisance, having nothing to live for and having lived long enough. Contrasting views were rare exceptions but voiced firmly. Most were not worried about death itself, but concerned more about the dying process and impacts on those left behind; a peaceful and pain-free death was a common ideal. Attitudes ranged from not wanting to think about death, through accepting its inevitable approach to longing for its release. Preferring to be made comfortable rather than have life-saving treatment if seriously ill, and wishing to avoid hospital, were commonly expressed views. There was little or no future planning, some consciously choosing not to. Uncertainty hampered end-of-life planning even when death was expected soon. Some stressed circumstances, such as severe dependency and others’ likely decision-making roles, would influence choices. Carers found these issues harder to raise but felt they would know their older relatives’ preferences, usually palliative care, although we found two discrepant views. Conclusions This study’s rare data show ≥95-year-olds are willing to discuss dying and end-of-life care but seldom do. Formal documentation of wishes is extremely rare and may not be

  1. Using a Pocket Card to Improve End-of-life Care on Internal Medicine Clinical Teaching Units: A Cluster-randomized Controlled Trial

    PubMed Central

    Baker, Lindsay; Downar, James

    2008-01-01

    Background End-of-life care is suboptimally taught in undergraduate and postgraduate education in Canada. Previous interventions to improve residents’ knowledge and comfort have involved lengthy comprehensive educational modules or dedicated palliative care rotations. Objective To determine the effectiveness of a cheap, portable, and easily implemented pocket reference for improving residents’ knowledge and comfort level in dealing with pain and symptom management on the medical ward. Design Cluster-randomized controlled trial conducted from August 2005 to June 2006. Setting Medical clinical teaching units (CTUs) in 3 academic hospitals in Toronto, Canada. Participants All residents rotating through the medical CTUs who consented to participate in the study. Intervention Residents at 1 hospital received a pocket reference including information about pain and symptom control, as well as 1–2 didactic end-of-life teaching sessions per month normally given as part of the rotation. Residents at the other 2 hospitals received only the didactic sessions. Main Outcome Measures A 10-question survey assessing knowledge and comfort level providing end-of-life care to medical inpatients, as well as focus group interviews. Results One hundred thirty-six residents participated on 3 CTUs for a participation rate of approximately 75%. Comfort levels improved in both control (p < .01) and intervention groups (p < .01), but the increase in comfort level was significantly higher in the intervention group (z = 2.57, p < .01). Knowledge was not significantly improved in the control group (p = .06), but was significantly improved in the intervention group (p = .01). Greater than 90% of residents in the intervention group used the card at least once per week, and feedback from the focus groups was very positive. Conclusions Our pocket card is a feasible, economical, and educational intervention that improves resident comfort level and knowledge in delivering

  2. End-of-life issues in caring for patients with dementia: the case for palliative care in management of terminal dementia.

    PubMed

    Coleman, Albert M E

    2012-02-01

    The number of people suffering with dementia is increasing in the general population and the trend is projected to continue as people live longer, especially in countries with developed economies. The most common cause of dementia (among the many other causes) is Alzheimer's dementia, which is considered a terminal illness. The disease could eventually lead to death, or death could occur as a consequence of co-morbid physical complications. The problem of end of life (EOL) care for patients suffering from dementia though spoken of and written about, does not get the attention and system support as for example patients suffering from cancer receive. Many reasons have been advanced for the current state of affairs where EOL issues for patients suffering from dementia are concerned. This article attempts to revisit the issues, and the reasons, that may contribute to this. Some guidelines on palliative management in cases of patients suffering from severe dementia exist; the evidence base for these guidelines though is relatively weak. The ethical and legal issues that may influence or impact on the decision to initiate the palliative care pathway in the management of EOL issues for dementia patients in the terminal or end stage of the illness is highlighted. Initiatives by the department of health in England and Wales, and other bodies with interest in dementia issues and palliative care in the United Kingdom to ensure good and acceptable EOL pathways for patients with dementia are mentioned.

  3. Health care ethics and health law in the Dutch discussion on end-of-life decisions: a historical analysis of the dynamics and development of both disciplines.

    PubMed

    Kater, Loes; Houtepen, Rob; De Vries, Raymond; Widdershoven, Guy

    2003-12-01

    Over the past three or four decades, the concept of medical ethics has changed from a limited set of standards to a broad field of debate and research. We define medical ethics as an arena of moral issues in medicine, rather than a specific discipline. This paper examines how the disciplines of health care ethics and health care law have developed and operated within this arena. Our framework highlights the aspects of jurisdiction (Abbott) and the assignment of responsibilities (Gusfield). This theoretical framework prompted us to study definitions and changing responsibilities in order to describe the development and interaction of health care ethics and health law. We have opted for the context of the Dutch debate about end-of-life decisions as a relevant case study. We argue that the specific Dutch definition of euthanasia as 'intentionally taking the life of another person by a physician, upon that person's request' can be seen as the result of the complex jurisdictional process. This illustrates the more general conclusion that the Dutch debate on end-of-life decisions and the development of the two disciplines must be understood in terms of mutual interaction.

  4. Days spent in acute care hospitals at the end of life of cancer patients in four Swiss cantons: a retrospective database study (SAKK 89/09).

    PubMed

    Matter-Walstra, K W; Achermann, R; Rapold, R; Klingbiel, D; Bordoni, A; Dehler, S; Konzelmann, I; Mousavi, M; Clough-Gorr, K M; Szucs, T; Schwenkglenks, M; Pestalozzi, B C

    2016-02-09

    Number of days spent in acute hospitals (DAH) at the end of life is regarded as an important care quality indicator for cancer patients. We analysed DAH during 90 days prior to death in patients from four Swiss cantons. Claims data from an insurance provider with about 20% market share and patient record review identified 2086 patients as dying of cancer. We calculated total DAH per patient. Multivariable generalised linear modelling served to evaluate potential explanatory variables. Mean DAH was 26 days. In the multivariable model, using complementary and alternative medicine (DAH = 33.9; +8.8 days compared to non-users) and canton of residence (for patient receiving anti-cancer therapy, Zürich DAH = 22.8 versus Basel DAH = 31.4; for other patients, Valais DAH = 22.7 versus Ticino DAH = 33.7) had the strongest influence. Age at death and days spent in other institutions were additional significant predictors. DAH during the last 90 days of life of cancer patients from four Swiss cantons is high compared to most other countries. Several factors influence DAH. Resulting differences are likely to have financial impact, as DAH is a major cost driver for end-of-life care. Whether they are supply- or demand-driven and whether patients would prefer fewer days in hospital remains to be established.

  5. Communication between Physicians and Family Caregivers about Care at the End of Life: When Do Discussions Occur and What Is Said?

    PubMed Central

    CHERLIN, EMILY; FRIED, TERRI; PRIGERSON, HOLLY G.; SCHULMAN-GREEN, DENA; JOHNSON-HURZELER, ROSEMARY; BRADLEY, ELIZABETH H.

    2006-01-01

    Background: Few studies have examined physician-family caregiver communication at the end of life, despite the important role families have in end-of-life care decisions. We examined family caregiver reports of physician communication about incurable illness, life expectancy, and hospice; the timing of these discussions; and subsequent family understanding of these issues. Design: Mixed methods study using a closed-ended survey of 206 family caregivers and open-ended, in-depth interviews with 12 additional family caregivers. Setting/Subjects: Two hundred eighteen primary family caregivers of patients with cancer enrolled with hospice between October 1999 and June 2002 Measurements: Family caregiver reports provided at the time of hospice enrollment of physician discussions of incurable illness, life expectancy, and hospice. Results: Many family caregivers reported that a physician never told them the patient’s illness could not be cured (20.8%), never provided life expectancy (40% of those reportedly told illness was incurable), and never discussed using hospice (32.2%). Caregivers reported the first discussion of the illness being incurable and of hospice as a possibility occurred within 1 month of the patient’s death in many cases (23.5% and 41.1%, respectively). In open-ended interviews, however, family caregivers expressed ambivalence about what they wanted to know, and their difficulty comprehending and accepting “bad news” was apparent in both qualitative and quantitative data. Conclusion: Our findings suggest that ineffective communication about end-of-life issues likely results from both physician’s lack of discussion and family caregiver’s difficulty hearing the news. Future studies should examine strategies for optimal physician-family caregiver communication about incurable illness, so that families and patients can begin the physical, emotional, and spiritual work that can lead to acceptance of the irreversible condition. PMID:16351531

  6. Compassion in healthcare – lessons from a qualitative study of the end of life care of people with dementia

    PubMed Central

    Crowther, Jacqueline; Wilson, Kenneth CM; Horton, Siobhan; Lloyd-Williams, Mari

    2013-01-01

    Objectives A lack of compassion in UK healthcare settings has received much recent attention. This study explores the experiences of people with dementia in the last year of life and time surrounding death and how the presence and lack of compassion, kindness and humanity influenced the experience of care. Design Qualitative in-depth interviews with bereaved informal carers of people with dementia. Setting United Kingdom. Participants Forty bereaved carers – 31 women and nine men – with an age range of 18–86 years and from wide socioeconomic backgrounds participated. Main outcome measures Experiences of carers of care for person with dementia during last year of life. Results The interviews highlighted differences and challenges in care settings in providing compassionate, humanistic care and the impact of the care experienced by the person with dementia during the last year of life on informal carers during the bereavement period and beyond. Excellent examples of compassionate care were experienced alongside very poor and inhumane practices. Conclusion The concepts of compassion, kindness and humanity in dementia care are discussed within the paper. The ability to deliver care that is compassionate, kind and humanistic exists along a continuum across care settings – examples of excellent care sit alongside examples of very poor care and the reasons for this are explored together with discussion as to how health and social care staff can be trained and supported to deliver compassionate care. PMID:24108538

  7. Beyond the visual and verbal: Using participant-produced photographs in research on the surroundings for care at the end-of-life.

    PubMed

    Tishelman, Carol; Lindqvist, Olav; Hajdarevic, Senada; Rasmussen, Birgit H; Goliath, Ida

    2016-11-01

    The web of relationships between wellbeing and the environments in which people live has long been recognized. However, relatively little research has been conducted about end-of-life surroundings from the perspective of the dying person. In this study, we investigate which aspects of their surroundings are particularly meaningful for the people inhabiting them in the last phases of life, based on participant-produced photographs with follow-up interviews. Twenty-three people were purposefully recruited via specialized in-patient palliative care/hospice units, specialized palliative care home care teams, and residential care facilities for the elderly. Participants were given a digital camera, and asked to take pictures of that which was meaningful for them in their surroundings. The interviewer later viewed the photographs with the participant, asking: "what is this picture of?" and "why is it meaningful to you?" The database consists of 76 photographs with follow-up interviews, which were analyzed qualitatively in an iterative process. These empirical data demonstrate how a sense of being valued, and of being able to maintain contacts with one's daily life and sense of identity appear supported or hindered by features of the care surroundings. These features include a positive aesthetic experience incorporating both sensory stimulation using one's body as well as general ambiance; support appropriate for maintaining a sense of functional independence; and connections with one's past, present and future as a person within a wider world. Corporeality appears crucial for understanding, negotiating and interacting in one's surroundings, while maintaining both physical and social function. This data collection approach was found to offer alternative forms of expression as verbal ability decreases and symptom burden increases, making it useful in end-of-life research and practice development.

  8. Identifying patients with advanced chronic conditions for a progressive palliative care approach: a cross-sectional study of prognostic indicators related to end-of-life trajectories

    PubMed Central

    Amblàs-Novellas, J; Murray, S A; Espaulella, J; Martinez-Muñoz, M; Blay, C; Gómez-Batiste, X

    2016-01-01

    Objectives 2 innovative concepts have lately been developed to radically improve the care of patients with advanced chronic conditions (PACC): early identification of palliative care (PC) needs and the 3 end-of-life trajectories in chronic illnesses (acute, intermittent and gradual dwindling). It is not clear (1) what indicators work best for this early identification and (2) if specific clinical indicators exist for each of these trajectories. The objectives of this study are to explore these 2 issues. Setting 3 primary care services, an acute care hospital, an intermediate care centre and 4 nursing homes in a mixed urban–rural district in Barcelona, Spain. Participants 782 patients (61.5% women) with a positive NECPAL CCOMS-ICO test, indicating they might benefit from a PC approach. Outcome measures The characteristics and distribution of the indicators of the NECPAL CCOMS-ICO tool are analysed with respect to the 3 trajectories and have been arranged by domain (functional, nutritional and cognitive status, emotional problems, geriatric syndromes, social vulnerability and others) and according to their static (severity) and dynamic (progression) properties. Results The common indicators associated with early end-of-life identification are functional (44.3%) and nutritional (30.7%) progression, emotional distress (21.9%) and geriatric syndromes (15.7% delirium, 11.2% falls). The rest of the indicators showed differences in the associations per illness trajectories (p<0.05). 48.2% of the total cohort was identified as advanced frailty patients with no advanced disease criteria. Conclusions Dynamic indicators are present in the 3 trajectories and are especially useful to identify PACC for a progressive PC approach purpose. Most of the other indicators are typically associated with a specific trajectory. These findings can help clinicians improve the identification of patients for a palliative approach. PMID:27645556

  9. End-of-life care across Southern Europe: a critical review of cultural similarities and differences between Italy, Spain and Portugal.

    PubMed

    Meñaca, Arantza; Evans, Natalie; Andrew, Erin V W; Toscani, Franco; Finetti, Silvia; Gómez-Batiste, Xavier; Higginson, Irene J; Harding, Richard; Pool, Robert; Gysels, Marjolein

    2012-06-01

    Evidence from a range of sources demonstrates that end-of-life (EoL) care practices and preferences vary across countries; culture is consistently one of the main explanations given for this. In order to understand how cultural factors are used to explain similarities and differences in EoL care between Spain, Italy and Portugal, database and hand searches were performed and cross-cutting core themes identified. Similarities included higher proportions of people who wished to die at home than actually died at home, a persistent trend for partial disclosure in Italy and Spain, low use of advance directives, and low incidence of all medical EoL decisions (with the exception of terminal sedation) compared to northern European countries. The role of religion and the importance of family ties were the two main cultural factors used to explain the similarities. Further research is needed in order to interpret the important differences that were also found.

  10. Interactional communication challenges in end-of-life care: dialectical tensions and management strategies experienced by home hospice nurses.

    PubMed

    Gilstrap, Cristina M; White, Zachary M

    2015-01-01

    This study examines the dialectical tensions experienced by home hospice nurses in interactions with patients, families, and health care providers. In-depth, semistructured interviews were conducted with 24 home hospice nurses from a mid-size for-profit hospice organization serving approximately 230 patients on an annual basis. Interviews revealed hospice nurses experience both interpersonal and organizational dialectics during hospice interactions: authoritative-nonauthoritative, revelation-concealment, independence-collaboration, and quality of care-business of care. Dialectics often resulted as a by-product of (a) responding to expectations and care choices of patients and families particular to the emotionally charged home context, (b) obtaining authorization from health care providers who are not members of the interdisciplinary team, and (c) pressures associated with providing quality patient care while fulfilling organizational role requirements. The praxis strategies used to negotiate tensions included segmentation, balance, recalibration, and spiraling inversion. Specifically, nurses employed strategies such as ascertaining family/patient acceptance, using persuasive tactics when communicating with external health care providers, relying on effective time management, and working off the clock to provide more in-person care. Although functional for patients and hospice organizations, nurses who continually rely on these strategies may experience job stress when their interpersonal commitments repeatedly conflict with organizational role demands.

  11. A Public Health Perspective on End of Life Care Joachim Cohen A Public Health Perspective on End of Life Care Luc Deliens Oxford University Press £34.99 272pp 9780199599400 9780199599400 [Formula: see text].

    PubMed

    2012-11-30

    CARE FOR those at the end of their lives is something that must concern all health professionals, not just those of us who nurse older people. And there is no doubt that every individual has some thoughts on how - and where - they would like to approach death. We see this need in ourselves, our relatives and our patients. But how far those hopes and wishes can be respected and achieved is another matter.

  12. Experiences of Parents and General Practitioners with End-of-Life Care in Adolescents and Young Adults with Cancer.

    PubMed

    Kaal, Suzanne E J; Kuijken, Noortje M J; Verhagen, Constant A H H V M; Jansen, Rosemarie; Servaes, Petra; van der Graaf, Winette T A

    2016-03-01

    This study aims to analyze the experiences of Dutch bereaved parents and general practitioners (GPs) with palliative care of AYAs (18-35 years) in the terminal stage. Fifteen parents and nine GPs involved with nine deceased AYAs filled out questionnaires and were interviewed by telephone, respectively. In general, the parents were satisfied with the emotional care they themselves received and the medical care that their child received. The GPs were very satisfied with the cooperation with the palliative team. Gaps are present in the areas of symptom control, communication between hospital professionals and parents, aftercare, and transition between hospital and GP.

  13. The Selection and Use of Outcome Measures in Palliative and End-of-Life Care Research: The MORECare International Consensus Workshop

    PubMed Central

    Evans, Catherine J.; Benalia, Hamid; Preston, Nancy J.; Grande, Gunn; Gysels, Marjolein; Short, Vicky; Daveson, Barbara A.; Bausewein, Claudia; Todd, Chris; Higginson, Irene J.

    2013-01-01

    Context A major barrier to widening and sustaining palliative care service provision is the requirement for better selection and use of outcome measures. Service commissioning is increasingly based on patient, carer, and service outcomes as opposed to service activity. Objectives To generate recommendations and consensus for research in palliative and end-of-life care on the properties of the best outcome measures, enhancing the validity of proxy-reported data and optimal data collection time points. Methods An international expert “workshop” was convened and an online consensus survey was undertaken using the MORECare Transparent Expert Consultation to generate recommendations and level of agreement. We focused on three areas: 1) measurement properties, 2) use of proxies, and 3) measurement timing. Data analysis comprised descriptive analysis of aggregate scores and collation of narrative comments. Results There were 31 workshop attendees; 29 recommendations were included in the online survey, completed by 28 experts. The top three recommendations by area were the following: 1) the properties of the best outcome measures are responsive to change over time and capture clinically important data, 2) to enhance the validity of proxy data requires clear and specific guidelines to aid lay individuals' and/or professionals' completion of proxy measures, and 3) data collection time points need clear identification to establish a baseline. Conclusion Outcome measurement in palliative and end-of-life care requires the use of psychometrically robust measures that are clinically responsive, with defined data collection time points to establish a baseline and clear administration guidelines to complete proxy measures. To further the field requires clinical imperatives to more closely inform recommendations on outcome measurement. PMID:23628515

  14. [End of life in France].

    PubMed

    Vacheron, André

    2013-01-01

    Two major changes in end-of-life management have occured in recent decades: first, because of the increase in life expectancy and the resulting aging of the population, most deaths now involve old or very old people; second, more than two-thirds of deaths occur in a hospital or an institution. Our fellow citizens are afraid of suffering and death. They wish for a peaceful death, as rapid as possible and, in recent surveys, say they favour euthanasia. Yet euthanasia is illegal in France and in most other Western countries (with the exception of the Benelux nations). Palliative care ensures dignity in death, without anxiety of suffering, and is expanding rapidly in France. Léonetti's law of 22 April 2005 ensures the protection of the weakest, who should never be considered unworthy of life, yet is poorly known to the public and even to physicians. It now needs to be applied in practice.

  15. [Physician-assisted suicide and advance care planning--ethical considerations on the autonomy of dementia patients at their end of life].

    PubMed

    Gather, Jakov; Vollmann, Jochen

    2014-10-01

    Physician-assisted suicide (PAS), which is currently the subject of intense and controversial discussion in medical ethics, is barely discussed in psychiatry, albeit there are already dementia patients in Germany and other European countries who end their own lives with the assistance of physicians. Based on the finding that patients who ask for medical assistance in suicide often have in mind the loss of their mental capacity, we submit PAS to an ethical analysis and put it into a broader context of patient autonomy at the end of life. In doing so, we point to advance care planning, through which the patient autonomy of the person concerned can be supported as well as respected in later stages of the disease. If patients adhere to their autonomous wish for PAS, physicians find themselves in an ethical dilemma. A further tabooing of the topic, however, does not provide a solution; rather, an open societal and professional ethical discussion and regulation are essential.

  16. [Decisions around the end of life on Intensive Care: making the transition from curative to palliative treatment].

    PubMed

    van der Werf, T S; Zijlstra, J G; Ligtenberg, J J M; Tulleken, J E

    2005-04-02

    The decision to move from curative treatment to palliative care in the intensive-care situation is less related to morals and ethics than it is to the assessment of medical issues, professionalism, communication and orchestration. Treatment should be considered medically pointless if, in the view of the treating physicians, it does not offer realistic chance to return to a meaningful life. Continuing futile care can be seen as disrespectful, both to the patient, his partner and the family, as well as to the members of the ICU team. Intensivists are responsible for withholding or withdrawing life support to patients in whom further life support is considered futile and who are unable to express their wishes due to critical illness and sedation. The intensivist typically makes this type of decision after a period in which medical and other information has been collected and after intensive discussions with other medical professionals as well as the partner and family. This is based on the trust that is built up through their skill, attitude and behaviour and that is perpetuated in a continuing process of intensive communication. Conflicts should be prevented, or at least recognised early and discussed. Ifa conflict is ongoing then it should be tackled by planning a number of consecutive consultations.

  17. Nursing Roles and Strategies in End-of-Life Decision Making in Acute Care: A Systematic Review of the Literature.

    PubMed

    Adams, Judith A; Bailey, Donald E; Anderson, Ruth A; Docherty, Sharron L

    2011-01-01

    The objective of this paper is to analyze the literature concerning nurses' roles and strategies in EOL decision making in acute care environments, synthesize the findings, and identify implications for future research. We conducted searches in CINAHL and PubMed, using a broad range of terms. The 44 articles retained for review had quantitative and qualitative designs and represented ten countries. These articles were entered into a matrix to facilitate examining patterns, themes, and relationships across studies. Three nursing roles emerged from the synthesis of the literature: information broker, supporter, and advocate, each with a set of strategies nurses use to enact the roles. Empirical evidence linking these nursing roles and strategies to patients and family members outcomes is lacking. Understanding how these strategies and activities are effective in helping patients and families make EOL decisions is an area for future research.

  18. Using a public health approach to improve end-of-life care: results and discussion of a health needs assessment undertaken in a large city in northern England.

    PubMed

    Ingold, Kathryn; Hicks, Fiona

    2015-06-01

    A detailed health needs assessment (HNA) for end-of-life care (EoLC) services was led by public health in Leeds to inform a commissioning strategy. To answer the question: are we delivering the best possible EoLC services within the resources available? Mixed methods were used with three approaches: epidemiological, corporate and comparative. More people from deprived communities die in hospital. 18% of people who die each year are on a palliative care register, reflecting a lack of recognition and planning for EoLC given that 75% of people who die need EoLC. Over 100 staff, patients and carers were interviewed and over 200 staff returned questionnaires. Staff highlighted concerns about capacity of services; pressure on out-of-hospital care; problems at physical and electronic interfaces between services; suboptimal hospital discharge; need for earlier recognition of the EoL stage for patients. Patients and carers stressed the importance of communication, coordination and continuity of care; full involvement in care planning; honesty and support for the bereaved; an advocate for patients and families; accessible information; improved urgent care; integrated team working; pain relief, dignity and respect. Issues from comparator sites included the need for sustainable leadership for change, lack of interoperability between IT systems; building advance care planning into working culture; gaps in psychological services, bereavement and pastoral support; integration within all clinical areas; lack of district nurses; few investment opportunities; getting home care support right; concerns about 111; incentives for general practitioners to deliver EoLC; variability in service and the Liverpool Care Pathway controversy. Ethical approval was not sought as the HNA was undertaken as a service evaluation. Local policy is that ethical approval is not required for service evaluation.

  19. Delivery of health care at the end of life in cancer patients of four swiss cantons: a retrospective database study (SAKK 89/09)

    PubMed Central

    2014-01-01

    Background The use of cancer related therapy in cancer patients at the end-of-life has increased over time in many countries. Given a lack of published Swiss data, the objective of this study was to describe delivery of health care during the last month before death of cancer patients. Methods Claims data were used to assess health care utilization of cancer patients (identified by cancer registry data of four participating cantons), deceased between 2006-2008. Primary endpoints were hospitalization rate and delivery of cancer related therapies during the last 30 days before death. Multivariate logistic regression assessed the explanatory value of patient and geographic characteristics. Results 3809 identified cancer patients were included. Hospitalization rate (mean 68.5%, 95% CI 67.0-69.9) and percentage of patients receiving anti-cancer drug therapies (ACDT, mean 14.5%, 95% CI 13.4-15.6) and radiotherapy (mean 7.7%, 95% CI 6.7-8.4) decreased with age. Canton of residence and insurance type status most significantly influenced the odds for hospitalization or receiving ACDT. Conclusions The intensity of cancer specific care showed substantial variation by age, cancer type, place of residence and insurance type status. This may be partially driven by cultural differences within Switzerland and the cantonal organization of the Swiss health care system. PMID:24885104

  20. Training and career development in palliative care and end-of-life research: opportunities for development in the U.S.

    PubMed

    Aziz, Noreen M; Grady, Patricia A; Curtis, J Randall

    2013-12-01

    There has been a dramatic increase in attention to the field of palliative care and end-of-life (PCEOL) research over the past 20 years. This increase is particularly notable in the development of palliative care clinical and educational programs. However, there remain important shortcomings in the evidence base to ensure access to and delivery of effective palliative care for patients with life-limiting illness and their families. Development of this evidence base will require that we train the next generation of researchers to focus on issues in PCEOL. The purpose of this article was to explore the current status of the recruitment, training, and retention of future investigators in PCEOL research in the U.S. and propose recommendations to move us forward. Some key contextual issues for developing and supporting this research workforce are articulated, along with timely and important research areas that will need to be addressed during research training and career development. We provide targeted key recommendations to facilitate the nurturing and support of the future research workforce that is needed to ensure the development and implementation of the science necessary for providing high-quality, evidence-based palliative care to all who need and desire it.

  1. End-of-life planning with frail patients attending general practice: an exploratory prospective cross-sectional study

    PubMed Central

    Dunphy, Eoin J; Conlon, Sarah C; O’Brien, Sarah A; Loughrey, Emer; O’Shea, Brendan J

    2016-01-01

    Background End-of-life planning means decision making with patients, formulating and recording decisions regarding their end-of-life care. Although clearly linked with benefits including improved quality of life, reduced hospital admissions, and less aggressive medical care, it is still infrequently undertaken and is regarded as challenging by healthcare professionals. Aim To ascertain the feasibility of improving the identification of patients at high risk of dying in general practice and the acceptability of providing patients identified with an end-of-life planning tool. Design and setting Exploratory prospective cross-sectional study in four general practices. Method Patients at high risk of dying were identified during routine consulting by their GP, using the Supportive and Palliative Care Indicators Tool (SPICT). Patients identified were invited to participate, and provided with Think Ahead — an end-of-life planning tool, which has been used previously in general practice. Participants completed telephone surveys, assessing their response to Think Ahead, and the acceptability of the GP raising end-of-life issues during routine consulting. Results Provision of Think Ahead to a purposive sample of preterminal patients identified by GPs was feasible, acceptable to most patients, and somewhat effective in increasing discussion among families and in practice on end-of-life planning. Conclusion The SPICT and Think Ahead tools were mostly acceptable, effective, and enabling of discussions on end-of-life care in general practice. PMID:27432607

  2. Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care

    PubMed Central

    Calanzani, Natalia; Higginson, Irene J; Koffman, Jonathan; Gomes, Barbara

    2016-01-01

    Background Examination of factors independently associated with participation in mortality followback surveys is rare, even though these surveys are frequently used to evaluate end-of-life care. We aimed to identify factors associated with 1) participation versus non-participation and 2) provision of an active refusal versus a silent refusal; and systematically examine reasons for refusal in a population-based mortality followback survey. Methods Postal survey about the end-of-life care received by 1516 people who died from cancer (aged ≥18), identified through death registrations in London, England (response rate 39.3%). The informant of death (a relative in 95.3% of cases) was contacted 4–10 months after the patient died. We used multivariate logistic regression to identify factors associated with participation/active refusals and content analysis to examine refusal reasons provided by 205 nonparticipants. Findings The odds of partaking were higher for patients aged 90+ (AOR 3.48, 95%CI: 1.52–8.00, ref: 20–49yrs) and female informants (AOR 1.70, 95%CI: 1.33–2.16). Odds were lower for hospital deaths (AOR 0.62, 95%CI: 0.46–0.84, ref: home) and proxies other than spouses/partners (AORs 0.28 to 0.57). Proxies of patients born overseas were less likely to provide an active refusal (AOR 0.49; 95% CI: 0.32–0.77). Refusal reasons were often multidimensional, most commonly study-related (36.0%), proxy-related and grief-related (25.1% each). One limitation of this analysis is the large number of nonparticipants who did not provide reasons for refusal (715/920). Conclusions Our survey better reached proxies of older patients while those dying in hospitals were underrepresented. Proxy characteristics played a role, with higher participation from women and spouses/partners. More information is needed about the care received by underrepresented groups. Study design improvements may guide future questionnaire development and help develop strategies to increase

  3. Preferences for end-of-life care among community-dwelling older adults and patients with advanced cancer: A discrete choice experiment.

    PubMed

    Finkelstein, Eric A; Bilger, Marcel; Flynn, Terry N; Malhotra, Chetna

    2015-11-01

    Singapore is in the midst of several healthcare reforms in efforts to finance and deliver health services for a rapidly aging population. The primary focus of these reforms is to make healthcare services, including those at the end of life (EOL), affordable. Given the increasingly high health care costs at the EOL, policy makers need to consider how best to allocate resources. One strategy is to allocate resources based on the preferences of sub-populations most likely to be affected. This paper thus aims to quantify preferences for EOL care both among community dwelling older adults (CDOAs) and among patients with a life-limiting illness. A discrete choice experiment was administered to CDOAs and advanced cancer patients in Singapore and willingness to pay (WTP) for specific EOL improvements was estimated. We find that patients have a higher WTP for nearly all EOL attributes compared with CDOAs. We also show that, for both groups, moderate life extension is not the most important consideration; WTP for one additional life year is lower than common thresholds for cost-effectiveness. Irrespective of whose preference are considered, the results highlight the importance of pain management and supporting home deaths at the EOL, perhaps at the expense of public funding for costly but only marginally effective treatments.

  4. Legal Considerations in End-of-Life Decisionmaking in Louisiana

    PubMed Central

    Koppel, Ann; Sullivan, Shelley M

    2011-01-01

    End-of-life directives are among the most difficult decisions that a patient or a patient's family makes because of the many moral, ethical, legal, and practical considerations. This article addresses the basic legal framework in Louisiana for end-of-life directives. Although Louisiana law provides a framework for addressing end-of-life issues, the law does not dictate outcomes or decisions. The law is often the refuge of last resort, providing unsatisfactory results. End-of-life care decisions are generally most productive when they are based on discussions between patients, their families, and their care team regarding the patient's wishes. PMID:22190883

  5. Evaluation of an Organisational Intervention to Promote Integrated Working between Health Services and Care Homes in the Delivery of End-of-Life Care for People with Dementia: Understanding the Change Process Using a Social Identity Approach

    PubMed Central

    Amador, Sarah; Mathie, Elspeth; Nicholson, Caroline

    2016-01-01

    In the United Kingdom, approximately a third of people with dementia live in long-term care facilities for adults, the majority of whom are in the last years of life. Working arrangements between health services and care homes in England are largely ad hoc and often inequitable, yet quality end-of-life care for people with dementia in these settings requires a partnership approach to care that builds on existing practice. This paper reports on the qualitative component of a mixed method study aimed at evaluating an organisational intervention shaped by Appreciative Inquiry to promote integrated working between visiting health care practitioners (i.e. General Practitioners and District Nurses) and care home staff. The evaluation uses a social identity approach to elucidate the mechanisms of action that underlie the intervention, and understand how organisational change can be achieved. We uncovered evidence of both (i) identity mobilisation and (ii) context change, defined in theory as mechanisms to overcome divisions in healthcare. Specifically, the intervention supported integrated working across health and social care settings by (i) the development of a common group identity built on shared views and goals, but also recognition of knowledge and expertise specific to each service group which served common goals in the delivery of end-of-life care, and (ii) development of context specific practice innovations and the introduction of existing end-of-life care tools and frameworks, which could consequently be implemented as part of a meaningful bottom-up rather than top-down process. Interventions structured around a Social Identity Approach can be used to gauge the congruence of values and goals between service groups without which efforts to achieve greater integration between different health services may prove ineffectual. The strength of the approach is its ability to accommodate the diversity of service groups involved in a given area of care, by valuing their

  6. Evaluation of an Organisational Intervention to Promote Integrated Working between Health Services and Care Homes in the Delivery of End-of-Life Care for People with Dementia: Understanding the Change Process Using a Social Identity Approach.

    PubMed

    Amador, Sarah; Goodman, Claire; Mathie, Elspeth; Nicholson, Caroline

    2016-06-03

    In the United Kingdom, approximately a third of people with dementia live in long-term care facilities for adults, the majority of whom are in the last years of life. Working arrangements between health services and care homes in England are largely ad hoc and often inequitable, yet quality end-of-life care for people with dementia in these settings requires a partnership approach to care that builds on existing practice. This paper reports on the qualitative component of a mixed method study aimed at evaluating an organisational intervention shaped by Appreciative Inquiry to promote integrated working between visiting health care practitioners (i.e. General Practitioners and District Nurses) and care home staff. The evaluation uses a social identity approach to elucidate the mechanisms of action that underlie the intervention, and understand how organisational change can be achieved. We uncovered evidence of both (i) identity mobilisation and (ii) context change, defined in theory as mechanisms to overcome divisions in healthcare. Specifically, the intervention supported integrated working across health and social care settings by (i) the development of a common group identity built on shared views and goals, but also recognition of knowledge and expertise specific to each service group which served common goals in the delivery of end-of-life care, and (ii) development of context specific practice innovations and the introduction of existing end-of-life care tools and frameworks, which could consequently be implemented as part of a meaningful bottom-up rather than top-down process. Interventions structured around a Social Identity Approach can be used to gauge the congruence of values and goals between service groups without which efforts to achieve greater integration between different health services may prove ineffectual. The strength of the approach is its ability to accommodate the diversity of service groups involved in a given area of care, by valuing their

  7. Constructing Understandings of End-of-Life Care in Europe: A Qualitative Study Involving Cognitive Interviewing with Implications for Cross-National Surveys

    PubMed Central

    Bechinger-English, Dorothee; Bausewein, Claudia; Simon, Steffan T.; Harding, Richard; Higginson, Irene J.; Gomes, Barbara

    2011-01-01

    Abstract Background Although national findings regarding people's end-of-life care (EoLC) preferences and priorities are available within Europe, a lack of research coordination between countries has meant that cross-national understandings of EoLC remain unknown. Purpose To (1) identify English and German understandings of EoLC within the context of an EoLC survey, and (2) to synthesise these understandings to aid interpretation of results from a cross-national survey. Methods An inductive and interpretive two-phased sequential design involving (1) qualitative analysis of cognitive interview data from 15 English and 15 German respondents to develop country-related categories, and (2) qualitative synthesis to identify a conceptually coherent understanding of EoLC. Results Open and axial coding resulted in six English and six German categories. Commonalities included (a) the importance of social and relational dimensions, (b) dynamic decision making comprising uncertainty, (c) a valuing of life's quality and quantity, and (d) expectations for holistic care involving autonomy, choice, and timely information from trusted professionals. Differences involved attention to practical matters, and thoughts about prolongation of life, preferred place of death, and the role of media and context. Synthesis resulted in four concepts with underlying coherence: expectations of a high standard of EoLC involving autonomy, choice, and context; evolving decision making amid anticipated change; thoughts about living and existing; and worldviews shaping EoLC preferences in real and hypothetical scenarios. Conclusion Individual and country-related diversity must be remembered when quantifying EoLC understandings. Inductive-interpretive analysis of cognitive interview data aids interpretation of survey findings. Cross-national research coordination and qualitative synthesis assists EoLC in Europe. PMID:21306232

  8. Determinants of home death in palliative home care: using the interRAI palliative care to assess end-of-life care.

    PubMed

    Brink, Peter; Frise Smith, Trevor

    2008-01-01

    Many terminally ill patients are given the choice to die at home. This study identified determinants of home death among patients receiving palliative home care. Health information was collected using the interRAI palliative care assessment tool. The sample included health information from 536 patients receiving home health care from one community care access centre in Ontario, Canada. Patients who died at home were more likely to be functionally impaired and less likely to live alone. The patients' wish to die at home and the family's ability to cope were strong determinants of home death. This study suggests that the presence of a supportive family that is able to work with the health care team to implement a plan of care is important to the patients' ability to die at home. This study highlights the need to treat the patient and the caregiver(s) as a unit of care.

  9. [Creating a good relationship between hospital and clinic for the support of end-of-life home care patients-usefulness of questionnaires to indicate the capacity of home care-supporting clinics for palliative care].

    PubMed

    Takahashi, Osamu; Kato, Toshihiko; Shimizu, Kazuko; Chiba, Yasuko; Ishiguro, Motoko; Iwadare, Midori

    2012-12-01

    We have been practicing palliative care for terminal cancer patients at outpatient sections, patient wards, by home care, and by visiting nursing stations for the last 4 years. After the establishment of our palliative care unit in June 2011, it became difficult for us to provide sufficient home care support by ourselves, because of the increasing number of the patients and their widespread locations. It is therefore necessary to cooperate with regional medical clinics in order to support the patients who need home care even after their condition deteriorates. To determine the extent to which the home care-supporting clinics perform palliative care, we used an original questionnaire. Twenty-five clinics agreed to the publication of their names as our cooperating clinics. The number of patients who received palliative care at home from home care clinics after visiting our hospital increased from 8% to 14%, and the rate of patients who died at home also increased from 10% to 13%. Information about cooperating with home care clinics is very important and the improvement of palliative care skills necessary for home care doctors to continue their support for End-Of-Life cancer patients. Furthermore, the hospital should offer a strict and timely backup when the condition of patients treated at home suddenly deteriorates.

  10. A Comparison of Web-based and Small-Group Palliative and End-of-Life Care Curricula: A Quasi-Randomized Controlled Study at One Institution

    PubMed Central

    Day, Frank C.; Srinivasan, Malathi; Der-Martirosian, Claudia; Griffin, Erin; Hoffman, Jerome R.; Wilkes, Michael S.

    2014-01-01

    Purpose Few studies have compared the effect of web-based eLearning versus small-group learning on medical student outcomes. Palliative and end-of-life (PEOL) education is ideal for this comparison, given uneven access to PEOL experts and content nationally. Method In 2010, the authors enrolled all third-year medical students at the University of California, Davis School of Medicine into a quasi-randomized controlled trial of web-based interactive education (eDoctoring) compared to small-group education (Doctoring) on PEOL clinical content over two months. All students participated in three 3-hour PEOL sessions with similar content. Outcomes included a 24-item PEOL-specific self-efficacy scale with three domains (diagnosis/treatment [Cronbach’s alpha = 0.92, CI: 0.91–0.93], communication/prognosis [alpha = 0.95; CI: 0.93–0.96], and social impact/self-care [alpha = 0.91; CI: 0.88–0.92]); eight knowledge items; ten curricular advantage/disadvantages, and curricular satisfaction (both students and faculty). Results Students were randomly assigned to web-based eDoctoring (n = 48) or small-group Doctoring (n = 71) curricula. Self-efficacy and knowledge improved equivalently between groups: e.g., prognosis self-efficacy, 19%; knowledge, 10–42%. Student and faculty ratings of the web-based eDoctoring curriculum and the small group Doctoring curriculum were equivalent for most goals, and overall satisfaction was equivalent for each, with a trend towards decreased eDoctoring student satisfaction. Conclusions Findings showed equivalent gains in self-efficacy and knowledge between students participating in a web-based PEOL curriculum, in comparison to students learning similar content in a small-group format. Web-based curricula can standardize content presentation when local teaching expertise is limited, but may lead to decreased user satisfaction. PMID:25539518

  11. Teaching Cultural Considerations at the End of Life: End of Life Nursing Education Consortium Program Recommendations.

    ERIC Educational Resources Information Center

    Matzo, Marianne LaPorte; Sherman, Deborah Witt; Mazanec, Polly; Barber, Marty Ayers; Virani, Rose; McLaughlin, M. Maureen

    2002-01-01

    Nursing faculty (n=564) and continuing education faculty (n=707) were trained in cultural considerations at the end of life using experiential and role modeling methods. Training included dimensions of culture, cross-cultural communication, beliefs about death and dying, and attributes and skills for culturally competent nursing care. (Contains 25…

  12. End-of-life decisions in neonates.

    PubMed

    Kollée, L A; van der Heide, A; de Leeuw, R; van der Maas, P J; van der Wal, G

    1999-06-01

    In a large percentage of the infants who die in the neonatal intensive care setting, an end-of-life decision was made before death, usually a decision to forego life-sustaining treatment. This was confirmed in a recent study in The Netherlands that showed also that a minority of cases include the administration of drugs to hasten death, usually in patients with severe congenital multiple or central nervous system anomalies. Over 80% of Dutch pediatricians support this option under certain conditions. Almost all pediatricians are of the opinion that these cases have to be subject to public review, but they favor review by a committee of independent medical, judicial, and ethical professionals rather than by the public prosecutor. A discussion group on this subject recently made a proposal for such a reviewing procedure to the Dutch governmental authorities and described the requirements concerning end-of-life decisions in neonatal medicine. Proper handling of ethical aspects of medical treatment including review and feedback after end-of-life decisions can contribute to high standards of quality of care.

  13. Intercultural differences and communication at the end of life.

    PubMed

    Hallenbeck, J L

    2001-06-01

    Cross-cultural encounters at the end of life are common and can result in misunderstandings and conflicts. The primary care physician is ideally suited to facilitate communication that can promote understanding and conflict resolution.

  14. Weaving interdisciplinary and discipline-specific content into palliative care education: one successful model for teaching end-of-life care.

    PubMed

    Supiano, Katherine P

    2013-01-01

    While palliative care is best delivered in an interdisciplinary format, courses teaching the interdisciplinary approach to palliative care are rare in healthcare education. This article describes a graduate-level course in palliative care for students in nursing, pharmacy, social work, and gerontology taught by faculty from each discipline. The overarching goals of this course are to convey core palliative care knowledge across disciplines, articulate the essential contribution of each discipline in collaborative care, and to define interdisciplinary processes learners need to understand and navigate interdisciplinary palliative care. Learning outcomes included increased knowledge in palliative care, enhanced attitudes in practice and application of skills to clinical practice settings, increased ability to contribute discipline-specific knowledge to their teams' discussions, and a sense of increasing confidence in participating in the care of complex patients, communicating with families, and contributing to the team as a member of their own discipline.

  15. Drug therapy optimization at the end of life.

    PubMed

    Cruz-Jentoft, Alfonso J; Boland, Benoit; Rexach, Lourdes

    2012-06-01

    Older people reaching end-of-life status are particularly at risk of adverse effects of drug therapy. Polypharmacy, declining organ function, co-morbidity, malnutrition, cachexia and changes in body composition all sum up to increase the risk of many drug-related problems in individuals who receive end-of-life care. End of life is defined by a limited lifespan or advanced disability. Optimal prescribing for end-of-life patients with multimorbidity, especially in those dying from non-cancer conditions, remains mostly unexplored, despite the increasing recognition that the management goals for patients with chronic diseases should be redefined in the setting of reduced life expectancy. Most drugs used for symptom palliation in end-of-life care of older patients are used without solid evidence of their benefits and risks in this particularly frail population. Appropriate dosing or optimal administration routes are in most cases unknown. Avoiding or discontinuing drugs that aim to prolong life or prevent disability is usually common sense in end-of-life care, particularly when the time needed to obtain the expected benefits from the drug is longer than the life expectancy of a particular individual. However, discontinuation of drugs is not standard practice, and prescriptions are usually not adapted to changes in the course of advanced diseases. Careful consideration of remaining life expectancy, time until benefit, goals of care and treatment targets for each drug seems to be a sensible framework for decision making. In this article, some key issues on drug therapy at the end of life are discussed, including principles of decision making about drug treatments, specific aspects of drug therapy in some common geriatric conditions (heart failure and dementia), treatment of acute concurrent problems such as infections, evidence to guide the choice and use of drugs to treat symptoms in palliative care, and avoidance of some long-term therapies in end-of-life care. Solid

  16. Dignity reevaluated: A theological examination of human dignity and the role of the Church in bioethics and end-of-life care

    PubMed Central

    Genuis, Quentin I. T.

    2016-01-01

    Predominant among the terminological ambiguities that plague contemporary bioethics is confusion attending the meaning of the term “human dignity,” particularly as it applies to so-called end-of-life discussions. This study surveys current trends in treatment of the concept of dignity, examining relevant thinkers who see dignity as redundant or as capability-dependent. These inadequate views are contrasted with an attitude, based theologically in Mark 5, that understands human dignity to represent an absolute characteristic that is donated graciously to all bearers of imago Dei. Human dignity must thus be affirmed as inviolable and independent of autonomy, rationality, or capability. A specific task of the Christian Church is to faithfully recognize and proclaim this dignity. This investigation is particularly relevant in the face of contemporary discussions regarding euthanasia and physician-assisted death. Lay Summary: Much of the polarization within the contemporary bioethical discussion proceeds out of confusion regarding how we ought to define the terms of the debate. If we may take the existing debates regarding euthanasia and physician-assisted death as an example, we may understand the vital need for a sensible definition of the term that stands at the heart of the arguments of both sides of the debate: “human dignity.” As such, this study seeks to define dignity in a logical, theological, deeply personal, and highly practical fashion, and to outline the critical role of the Church within such an understanding. Sometimes, when I walk into the room, he ignores me. Sometimes he thinks I am someone else. Most often he is asleep, subjugated by drugs designed to prevent agitation, although “agitation” is the sterilized hospital word for what I would call unbridled panic, total disorientation. The night he had the stroke, they had to tie him to the bed just to keep him in the hospital. And they wouldn't let me see him because he had been calling my

  17. Roma Women's Perspectives on End-of-Life Decisions.

    PubMed

    Peinado-Gorlat, Patricia; Castro-Martínez, Francisco Javier; Arriba-Marcos, Beatriz; Melguizo-Jiménez, Miguel; Barrio-Cantalejo, Inés

    2015-12-01

    Spain's Roma community has its own cultural and moral values. These values influence the way in which end-of-life decision-making is confronted. The objective of this study was to explore the perspective of Roma women on end-of-life decision-making. It was a qualitative study involving thirty-three Roma women belonging to groups for training and social development in two municipalities. We brought together five focus groups between February and December 2012. Six mediators each recruited five to six participants. We considered age and care role to be the variables that can have the most influence on opinion regarding end-of-life decision-making. We considered the discussion saturated when the ideas expressed were repeated. Data analysis was carried out according to five steps: describing, organizing, connecting, corroborating/legitimating, and representing the account. The main ideas gleaned from the data were as follows: (1) the important role of the family in end-of-life care, especially the role of women; (2) the large influence of community opinion over personal or family decisions, typical of closed societies; (3) the different preferences women had for themselves compared to that for others regarding desired end-of-life care; (4) unawareness or rejection of advance directives. Roma women wish for their healthcare preferences to be taken into account, but "not in writing." The study concluded that the success of end-of-life healthcare in Roma families and of their involvement in the making of healthcare decisions depends upon considering and respecting their idiosyncrasy.

  18. Personality, neuroticism, and coping towards the end of life.

    PubMed

    Chochinov, Harvey Max; Kristjanson, Linda J; Hack, Thomas F; Hassard, Thomas; McClement, Susan; Harlos, Mike

    2006-10-01

    The influence of personality characteristics on how patients cope with various challenges at the end of life has not been extensively studied. In order to examine the association between end-of-life experience and neuroticism (defined within the personality literature as a trait tendency to experience psychological distress), a measure of neuroticism was administered to a cohort of dying cancer patients. Various other measures of physical, psychological, and existential distress were also measured to explore their possible connection to patient personality style. The personality characteristic neuroticism demonstrated a significant relationship with several end-of-life sources of distress, including depression, anxiety, sense of dignity, quality of life (rating and satisfaction), hopelessness, concentration, and outlook on the future. Neuroticism appears to have a significant association with the dying experience. This association is expressed across the psychological, existential and, to a lesser extent, physical and social domains of end-of-life distress. This may help clinicians identify vulnerable individuals who are most likely to have poorer adjustments and may benefit from earlier targeted interventional approaches. Exploring the relationship between various facets of personality and end-of-life distress, and mapping this information against optimal therapeutic responses, remains the challenge for future research broaching this intriguing and largely ignored area of palliative care.

  19. End-of-life issues in the acute and critically ill patient

    PubMed Central

    Savory, Eric A; Marco, Catherine A

    2009-01-01

    The challenges of end-of-life care require emergency physicians to utilize a multifaceted and dynamic skill set. Such skills include medical therapies to relieve pain and other symptoms near the end-of-life. Physicians must also demonstrate aptitude in comfort care, communication, cultural competency, and ethical principles. It is imperative that emergency physicians demonstrate a fundamental understanding of end-of-life issues in order to employ the versatile, multidisciplinary approach required to provide the highest quality end-of-life care for patients and their families. PMID:19386133

  20. Conscientious objection: a potential neonatal nursing response to care orders that cause suffering at the end of life? Study of a concept.

    PubMed

    Catlin, Anita; Armigo, Christine; Volat, Deborah; Vale, Elnora; Hadley, Mary Ann; Gong, Wendy; Bassir, Ranginah; Anderson, Kelly

    2008-01-01

    This article is an exploratory effort meant to solicit and provoke dialog. Conscientious objection is proposed as a potential response to the moral distress experienced by neonatal nurses. The most commonly reported cause of distress for all nurses is following orders to support patients at the end of their lives with advanced technology when palliative or comfort care would be more humane. Nurses report that they feel they are harming patients or causing suffering when they could be comforting instead. We examined the literature on moral distress, futility, and the concept of conscientious objection from the perspective of the nurse's potential response to performing advanced technologic interventions for the dying patient. We created a small pilot study to engage in clinical verification of the use of our concept of conscientious objection. Data from 66 neonatal intensive care and pediatric intensive care unit nurses who responded in a one-month period are reported here. Interest in conscientious objection to care that causes harm or suffering was very high. This article reports the analysis of conscientious objection use in neonatal care.

  1. Institution of the health care agent in Polish legislation: position of the Polish Working Group on End-of-Life Ethics.

    PubMed

    Szeroczyńska, Małgorzata; Czarkowski, Marek; Krajnik, Małgorzata; Krajewski, Romuald; Pawłowski, Leszek; Adamczyk, Anna; Barczak-Oplustil, Agnieszka; Aszyk, Piotr; Kobyliński, Andrzej; Pasierski, Tomasz; Sobański, Piotr; Bołoz On Behalf Of The Polish Working Group On End-Of-Life Ethics, Wojciech

    2016-05-05

    INTRODUCTION In numerous countries legislation has been put in place allowing citizens to appoint persons authorized to make medical decisions on their behalf, should the principal lose such decision‑making capacity. OBJECTIVES The paper aimed to prepare a draft proposal of legal regulations introducing into Polish legislation the institution of the health care agent. PATIENTS AND METHODS The draft proposal has been grounded in 6 expertise workshops, in conjunction with several online debates. RESULTS The right to appoint a health care agent should apply to all persons of full legal capacity, and to minors over 16 years of age. Every non-legally incapacitated adult person would be eligible to be appointed a health care agent. Appointment of substitute agents should also be legally provided for. The prerogatives of health care agents would come into effect upon the principals' loss of their decisionmaking capacity, or upon the principals' waiving their right to be provided with pertinent information on their health status. The health care agents would make decisions in all matters pertaining to medical treatment, while remaining under no obligation to perform any hands-on caring duties for their principals. The term of medical power-of-attorney should be discretionary, while its revocation or resignation should be possible at any time. In the event of health care agents' inactivity, or in the event that their actions should appear contrary to the principals' best interests, an attending physician should notify a pertinent court of law whose prerogatives would facilitate revocation of a medical power-of-attorney.  CONCLUSIONS Statutory appointment of a health care agent allows every citizen to appoint in this capacity a person who, to the best of his or her knowledge, would best represent his or her interests in the event that the principal should ultimately lose the capacity to make medical decisions on his or her own behalf.

  2. The Impact of Personal Loss on the Experience of Health Professions: Graduate Students in End-of-Life and Bereavement Care

    ERIC Educational Resources Information Center

    Supiano, Katherine P.; Vaughn-Cole, Beth

    2011-01-01

    This study explored the impact of prior personal experience with grief on self-reported personal and professional development of graduate students in nursing, social work, counseling, pastoral care, and genetic counseling involved as cofacilitators in bereavement support groups, and of medical students observing interdisciplinary inpatient…

  3. 'It's very difficult to get respite out here at the moment': Australian findings on end-of-life care for Indigenous people.

    PubMed

    McGrath, Pam; Patton, Mary Anne; McGrath, Zoë; Olgivie, Katherine; Rayner, Robert; Holewa, Hamish

    2006-03-01

    Whilst access to respite care has been found to represent an important source of support for terminally ill patients and their families, the availability of these services to Indigenous Australians has to date remained undocumented. This potential need for respite in Indigenous communities was explored as part of a National Health and Medical Research Council (NH&MRC) funded study designed to develop an innovative model for Indigenous palliative care. The data needed for model development were collected through a series of open-ended, qualitative interviews conducted with a cross-section of consumers and health professionals within the Northern Territory, Australia. The findings reflected a serious need for Indigenous respite services, coupled with a severe deficiency in the present availability of these services, especially within rural and regional areas. This lack of local respite services was documented to be negatively impacting upon the ability of carers to fulfil their caring duties and was found placing undue physical, emotional and economic stress upon carers, patients and their families. Furthermore, the lack of access to local respite services documented was found to be forcing rural and regional patients to relocate to metropolitan areas away from the family, community and land to which strong ties are held. The lack of Indigenous respite services was also found to obstruct patients' and carers' wishes for death to occur in the local community, rather than in far away cities. Significant obstacles were found to be hindering the provision of respite care to Indigenous Australians, namely beliefs about families looking after their own, resource restrictions, limited staff availability in local areas, as well as problems associated with hostel use in metropolitan areas. The conclusions drawn from this study suggest the importance of tackling the obstacles preventing local respite services being established in areas close to where patients and carers live.

  4. “It is not the fading candle that one expects”: general practitioners’ perspectives on life-preserving versus “letting go” decision-making in end-of-life home care

    PubMed Central

    Renterghem, Veerle Van; Pype, Peter; Aelbrecht, Karolien; Derese, Anselme; Deveugele, Myriam

    2015-01-01

    Background Many general practitioners (GPs) are willing to provide end-of-life (EoL) home care for their patients. International research on GPs’ approach to care in patients’ final weeks of life showed a combination of palliative measures with life-preserving actions. Aim To explore the GP’s perspective on life-preserving versus “letting go” decision-making in EoL home care. Design Qualitative analysis of semi-structured interviews with 52 Belgian GPs involved in EoL home care. Results Nearly all GPs adopted a palliative approach and an accepting attitude towards death. The erratic course of terminal illness can challenge this approach. Disruptive medical events threaten the prospect of a peaceful end-phase and death at home and force the GP either to maintain the patient’s (quality of) life for the time being or to recognize the event as a step to life closure and “letting the patient go”. Making the “right” decision was very difficult. Influencing factors included: the nature and time of the crisis, a patient’s clinical condition at the event itself, a GP’s level of determination in deciding and negotiating “letting go” and the patient’s/family’s wishes and preparedness regarding this death. Hospitalization was often a way out. Conclusions GPs regard alternation between palliation and life-preservation as part of palliative care. They feel uncertain about their mandate in deciding and negotiating the final step to life closure. A shortage of knowledge of (acute) palliative medicine as one cause of difficulties in letting-go decisions may be underestimated. Sharing all these professional responsibilities with the specialist palliative home care teams would lighten a GP’s burden considerably.Key PointsA late transition from a life-preserving mindset to one of “letting go” has been reported as a reason why physicians resort to life-preserving actions in an end-of-life (EoL) context. We investigated GPs’ perspectives on this

  5. End-of-life preferences for atheists.

    PubMed

    Smith-Stoner, Marilyn

    2007-08-01

    Atheists represent an understudied population in palliative care medicine. Although professional and regulatory organizations require an individualized plan of care for each patient and family, little is known about atheist preferences for end-of-life (EOL) care. The aims of this pilot study were twofold: (1) to explore the EOL preferences for atheists, and (2) to apply a threefold model of spiritual care (intrapersonal, interpersonal, and natural interconnectedness) to assess the appropriateness of potential interventions for a group of atheists. Eighty-eight participants completed either an online or paper survey. Analyses of open-ended and closed questions were consistent with prior studies on EOL preferences, including components of a ;;good death.'' The results related to the first aim of the study, to explore EOL preferences, suggests that participants view of a good death was expanded to include respect for nonbelief and the withholding of prayer or other references to God. Strong preference for physician-assisted suicide and evidence-based medical interventions were central themes from participants. The second aim of the study, to apply a threefold definition of spirituality--which includes intrapersonal, interpersonal, and natural focus--appears appropriate in planning interventions for atheists at EOL. Participants expressed a deep desire to find meaning in their own lives (intrapersonal), to maintain connection with family and friends (interpersonal), and to continue to experience and appreciate the natural world (natural interconnectedness) through the dying experience. Additional research is necessary to explore the preferences for this understudied group. Further clarification of the use of the term "atheist'' is also necessary to ensure that the inclusion of all individuals with nontheist beliefs are represented in future research efforts.

  6. End-of-life care in advanced kidney disease: ethical and legal issues and key challenges for black and minority ethnic groups.

    PubMed

    Cronin, Antonia J

    2014-09-01

    Advances in modern medical technology have gone so far that it is now possible for machinery to keep people alive. To some extent this has led to a misperception in society that death can almost always be postponed because life-sustaining extracorporeal machinery of some sort or another, for example a dialysis machine, can prevent it. However, for some, being kept alive connected to a dialysis machine for four hours three times a week does not represent or even come close to an existence or quality of life they consider valuable. It may even cause unnecessary distress. This may be because they have reached a point at the end of their lives where they would like the focus of their treatment or care to become that which enables them to live as well as possible until they die. In these circumstances treatment and care should properly be that which enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. Identifying and acknowledging the importance of such a paradigm shift in the delivery of healthcare, and above all facilitating it, includes taking on the responsibility, incumbent upon us all, to address the ethical issues that are brought into focus. In this paper, I examine some of these issues. I consider the ways in which underlying theoretical ethical principles have informed the development of professional guidance and highlight the dynamic relationship this guidance has with the law. Finally, I demonstrate the ways in which it can be usefully applied to inform and assist clinical decision-making. Key challenges for BAME groups are addressed.

  7. Team Leadership and Cancer End-of-Life Decision Making.

    PubMed

    Waldfogel, Julie M; Battle, Dena J; Rosen, Michael; Knight, Louise; Saiki, Catherine B; Nesbit, Suzanne A; Cooper, Rhonda S; Browner, Ilene S; Hoofring, Laura H; Billing, Lynn S; Dy, Sydney M

    2016-11-01

    End-of-life decision making in cancer can be a complicated process. Patients and families encounter multiple providers throughout their cancer care. When the efforts of these providers are not well coordinated in teams, opportunities for high-quality, longitudinal goals of care discussions can be missed. This article reviews the case of a 55-year-old man with lung cancer, illustrating the barriers and missed opportunities for end-of-life decision making in his care through the lens of team leadership, a key principle in the science of teams. The challenges demonstrated in this case reflect the importance of the four functions of team leadership: information search and structuring, information use in problem solving, managing personnel resources, and managing material resources. Engaging in shared leadership of these four functions can help care providers improve their interactions with patients and families concerning end-of-life care decision making. This shared leadership can also produce a cohesive care plan that benefits from the expertise of the range of available providers while reflecting patient needs and preferences. Clinicians and researchers should consider the roles of team leadership functions and shared leadership in improving patient care when developing and studying models of cancer care delivery.

  8. The Impact of an End-of-Life Communication Skills Intervention on Physicians-in-Training

    ERIC Educational Resources Information Center

    Pekmezaris, Renee; Walia, Rajni; Nouryan, Christian; Katinas, Lori; Zeitoun, Nancy; Alano, Gloria; Guzik, Howard J.; Lester, Paula E.; Sunday, Suzanne; Wolf-Klein, Gisele; Steinberg, Harry

    2011-01-01

    The palliative medicine literature consistently documents that physicians are poorly prepared to help patients experience a "good death" and are often unaware of their ill patients' preferences for end-of-life care. The present study, enrolling 150 physicians, sought to improve their communication skills for end-of-life care. We found significant…

  9. Do Older Korean Immigrants Engage in End-of-Life Communication?

    ERIC Educational Resources Information Center

    Ko, Eunjeong; Roh, Soonhee; Higgins, Doreen

    2013-01-01

    End-of-life communication is an important process as it allows individuals' treatment preferences to be known, yet not every culture is receptive to such discussions. Planning for end-of-life care is not readily supported in Asian culture, and little is known about individuals' communication with family and health care professionals among older…

  10. End-of-Life Competencies and the NCLEX-RN Examination.

    ERIC Educational Resources Information Center

    Wendt, Anne

    2001-01-01

    Outlines places in the National Council Licensure Examination for Registered Nurses that address 15 nursing competencies for care of clients at the end of life. Categories are safe, effective care environment; health promotion and maintenance; psychosocial integrity; and physiological integrity. Sources of information on end-of-life content are…

  11. Cardiovascular implanted electronic devices in people towards the end of life, during cardiopulmonary resuscitation and after death: guidance from the Resuscitation Council (UK), British Cardiovascular Society and National Council for Palliative Care.

    PubMed

    Pitcher, David; Soar, Jasmeet; Hogg, Karen; Linker, Nicholas; Chapman, Simon; Beattie, James M; Jones, Sue; George, Robert; McComb, Janet; Glancy, James; Patterson, Gordon; Turner, Sheila; Hampshire, Susan; Lockey, Andrew; Baker, Tracey; Mitchell, Sarah

    2016-06-01

    The Resuscitation Council (UK), the British Cardiovascular Society (including the British Heart Rhythm Society and the British Society for Heart Failure) and the National Council for Palliative Care recognise the importance of providing clear and consistent guidance on management of cardiovascular implanted electronic devices (CIEDs) towards the end of life, during cardiorespiratory arrest and after death. This document has been developed to provide guidance for the full range of healthcare professionals who may encounter people with CIEDs in the situations described and for healthcare managers and commissioners. The authors recognise that some patients and people close to patients may also wish to refer to this document. It is intended as an initial step to help to ensure that people who have CIEDs, or are considering implantation of one, receive explanation of and understand the practical implications and decisions that this entails; to promote a good standard of care and service provision for people in the UK with CIEDs in the circumstances described; to offer relevant ethical and legal guidance on this topic; to offer guidance on the delivery of services in relation to deactivation of CIEDs where appropriate; to offer guidance on whether any special measures are needed when a person with a CIED receives cardiopulmonary resuscitation; and to offer guidance on the actions needed when a person with a CIED dies.

  12. Cancer in a dyadic context: older couples' negotiation of ambiguity and search for meaning at the end of life.

    PubMed

    Gardner, Daniel S

    2008-01-01

    Ambiguity in the dying experience can be a major source of stress for older couples who must often balance the provision of care with respect for autonomy, aggressive treatment with quality-of-life, and individual with dyadic understandings and preferences. This study explores patterns of relationship, support, and communication in married or partnered couples where one partner is diagnosed with advanced and terminal cancer. Thirty-five older spousal/partner dyads participated in focused, semistructured interviews about relational aspects of their illness experiences. Faced with often uncertain and ambiguous circumstances, cancer patients and their partner caregivers describe the individual and dyadic processes that they have engaged in as they approach the end of life. Implications are highlighted for future research and practice with older adult couples at the end of life.

  13. Ensuring pain relief for children at the end of life

    PubMed Central

    Grégoire, Marie-Claude; Frager, Gerri

    2006-01-01

    Pain management in the context of pediatric palliative care can be challenging. The present article reviews, through a case-based presentation, the nonpharmacological and pharmacological methods used to ensure adequate pain control in children facing end of life. Details on the impressive range of opioid dosages required and routes of administration are highlighted from published literature and clinical experience. Where available, evidence-based recommendations are provided. Potential side effects of pain medication and barriers to good pain control are discussed. Novel analgesics and innovative delivery methods are presented as future tools enhancing pain relief at the end of life. Some challenges to ethically grounded research in this important context of care are reviewed. PMID:16960633

  14. Infusing End-of-Life Issues into the Rehabilitation Counselor Education Curriculum

    ERIC Educational Resources Information Center

    Wadsworth, John; Harley, Debra; Smith, S. Mae; Kampfe, Charlene

    2008-01-01

    Rehabilitation counselors are assisting consumers with end-of-life issues. Counselors who have the capacity to assist with end-of-life issues in a culturally sensitive manner possess pre-established self-care networks, an understanding of death from multiple perspectives, knowledge of communication interventions, and appropriate outcome…

  15. Ethical obligations and clinical goals in end-of-life care: deriving a quality-of-life construct based on the Islamic concept of accountability before God (taklīf).

    PubMed

    Padela, Aasim; Mohiuddin, Afshan

    2015-01-01

    End-of-life medical decision making presents a major challenge to patients and physicians alike. In order to determine whether it is ethically justifiable to forgo medical treatment in such scenarios, clinical data must be interpreted alongside patient values, as well as in light of the physician's ethical commitments. Though much has been written about this ethical issue from religious perspectives (especially Christian and Jewish), little work has been done from an Islamic point of view. To fill the gap in the literature around Islamic bioethical perspectives on the matter, we derive a theologically rooted rubric for goals of care. We use the Islamic obligation for Muslims to seek medical treatment as the foundation for determining the clinical conditions under which Muslim physicians have a duty to treat. We next link the theological concept of accountability before God (taklīf) to quality-of-life assessment. Using this construct, we suggest that a Muslim physician is not obligated to maintain or continue clinical treatment when patients who were formerly of, or had the potential to be, mukallaf (the term for a person who has taklīf), are now not expected to regain that status by means of continued clinical treatment.

  16. Cinemeducation: teaching end-of-life issues using feature films.

    PubMed

    DiBartolo, Mary C; Seldomridge, Lisa A

    2009-08-01

    Given the rapidly escalating older adult population and the need to strengthen content on end-of-life care in nursing curricula, finding creative strategies to encourage student thinking about the dying process and personal choice in end-of-life care is a timely challenge for nurse educators. There is an evolving body of literature in a variety of disciplines on cinemeducation, or the use of films to promote learning and personal awareness. This article describes an innovative assignment incorporating feature films designed not only to enhance student knowledge of the stages and process of grief and the complexity of human reactions when facing end-of-life situations, but also to engage students in thinking about the importance of quality of life in palliative care. The assignment was given to students enrolled in a second-semester, junior-level advanced adult health nursing course. Faculty and student evaluations of the assignment are discussed, and suggestions for selecting films and structuring such an assignment are proposed.

  17. Pain relief at the end of life: nurses' experiences regarding end-of-life pain relief in patients with dementia.

    PubMed

    Brorson, Hanna; Plymoth, Henrietta; Örmon, Karin; Bolmsjö, Ingrid

    2014-03-01

    Patients with dementia receive suboptimal palliative care, and this patient group is at risk to have pain at the end of life. Because communicative impairments are common in this patient group, nurses play an important caregiver role in identifying, assessing, and relieving patients' pain. This study aimed to describe nurses' experiences regarding end-of-life pain relief in patients with dementia. This descriptive exploratory qualitative study was based on seven semistructured interviews. Burnard's content analysis inspired the data analysis. Two main categories were identified: (1) nurses' experience of difficulties concerning pain relief and (2) nurses' experience of resources concerning pain relief. Nurses experienced difficulties, such as feeling of powerlessness because of difficulties in obtaining adequate prescriptions for analgesics, ethical dilemmas, feeling of inadequacy because analgesia did not have the desired effect, and a feeling of not being able to connect with the patient. Factors, including knowledge about the patient, professional experience, utilization of pain assessment tools, interpersonal relationships, and interprofessional cooperation, served as resources and enabled end-of-life pain relief. The results of this study highlight the complexity of pain relief in patients with dementia at the end of life from a nursing perspective. The inability of patients with dementia to verbally communicate their pain makes them a vulnerable patient group, dependent on their caregivers. Knowing the life story of the patient, professional experience, teamwork based on good communication, and use of a pain assessment tool were reported by the nurses to improve pain relief at the end of life for patients with dementia.

  18. End of life decisions at the beginning of life.

    PubMed

    Snyder, R D

    1996-01-01

    Modern neonatal intensive care technology enhances the ability to maintain vulnerable newborns. In some circumstances survival may be insufficient justification for care. "End of life" strategies, originally applicable to adults, are being considered for newborns. Unresolved ethical issues in the care of these newborns involve multiple considerations. Concern occurs regarding patient-centered beneficence, non-maleficence, distributive justice, futility, legal rights of infants, and autonomy. The benefits to a newborn of treatment may fail to overcome the burdens of subsequent life. Under what circumstances a newborn loses the right to have life prolonged becomes a difficult ethical issue. With time and debate the proper response will become implemented.

  19. Contemporary psychological approaches to life at the end of life.

    PubMed

    Carpenter, Brian D

    2014-01-01

    When people have a serious life-limiting illness, physical symptoms are often prominent, both in the experience of the illness and in its treatment. No less important, however, are psychological symptoms. A holistic, bio-psycho-social-spiritual approach to quality of life near the end of life must address psychological distress of all types, including frank psychopathology, more moderate problems with living, and existential distress. Responding to mental health issues at the end of life requires (1) systematic and careful assessment, and (2) deployment of evidence-based treatments. In recent years, standardized assessment tools have been adapted or developed for use with people who have serious illness, and the same has happened with psychological treatments. Practitioners have several resources available to them. Given their practice orientation centered on meaningful engagement, occupational therapists can play an important role in responding to mental distress in patients with serious illness whose lives are becoming more circumscribed because of their medical condition or because of the mental distress itself. High-quality end-of-life care depends on scrupulous attention to the full spectrum of thoughts, feelings, and behaviors that unfold as death draws near.

  20. Communication Matters: Exploring the Intersection of Family and Practitioner End of Life Communication

    PubMed Central

    Omilion-Hodges, Leah M.; Swords, Nathan M.

    2017-01-01

    After establishing a baseline understanding of some of the factors that influence and shape family end of life communication, empirical research centered on the communication tendencies of nationally-recognized palliative care clinicians is presented. Because death is no longer confined to the bedroom and individuals are increasingly turning to hospitals and health care institutes to assist with end of life, the role of palliative care practitioners is vital. To that end, common communication-rooted issues that may transpire among various medical personnel are explored. Focus on a shared underlying tension—care vs. cure—links the findings between family and palliative care clinician communication regarding end of life. Practical communication solutions and suggestions are offered to facilitate productive and mindful end of life communication between and among family members and health care practitioners. PMID:28335501

  1. Legal aspects of end-of-life decisions in Italy: the penal relevance of the limitation of treatment in the terminally ill and the problem of causality by omission. The legal puzzle of end-of-life care in Italy: is therapeutic limitation in the terminally ill patients a crime of omission liable to prosecution?

    PubMed

    Fabris, E P; Piccinni, M

    2008-01-01

    The interruption of life support poses different problems for he who interrogates himself regarding the possible juridical role of omissible behaviour or activities by part of the physician when dealing with end-of-life interventions within the boundary of life and death. The present contribution proposes to trace the coordinates necessary to answer the main query regarding the obligations which may be incumbent on the physician. For this reason, the necessity to interpret the legal sanctions in a technical key is highlighted. This is performed in sight of a progressive and inevitable adaptation to problems which are the result of a social evolution, and to the conception of values which constitute an object responsibility, as renewed by the constitution. The laws that discipline crimes against life and individual integrity must be interpreted while keeping in mind that the objective of maintaining the patient in life must be integrated with the control of suffering and the guarantee of a dignified death. When identifying the principles which have to inspire the decisions during 'borderline or boundary situations', it is highlighted the way the physician has to resort to a just equilibrium between benefit, which can be reasonably expected, and sacrifice, which should be imposed, taking into consideration the criteria of good clinical practice, among which attention to the patient's will must be taken into consideration.

  2. Guardianship and End-of-Life Decision Making

    PubMed Central

    Cohen, Andrew B.; Wright, Megan S.; Cooney, Leo; Fried, Terri

    2015-01-01

    As the population ages, more adults will develop impaired decision-making capacity and have no family members or friends available to make medical decisions on their behalf. In such situations, a professional guardian is often appointed by the court. This is an official who has no pre-existing relationship with the impaired individual but is paid to serve as a surrogate decision-maker. When a professional guardian is faced with decisions concerning life-sustaining treatment, substituted judgment may be impossible, and reports have repeatedly suggested that guardians are reluctant to make the decision to limit care. Clinicians are well positioned to assist guardians with these decisions and safeguard the rights of the vulnerable persons they represent. Doing so effectively requires knowledge of the laws governing end-of-life decisions by guardians. Clinicians, however, are often uncertain about whether guardians are empowered to withhold treatment and when their decisions require judicial review. To address this issue, we analyzed state guardianship statutes and reviewed recent legal cases in order to characterize the authority of a guardian over choices about end-of-life treatment. We found that a large majority of state guardianship statutes have no language about end-of-life decisions and identified just five legal cases over the past decade that addressed a guardian’s authority over these decisions, with only one case providing a broad framework applicable to clinical practice. Work to improve end-of-life decision-making by guardians may benefit from a multi-disciplinary effort to develop comprehensive standards that can guide clinicians and guardians when treatment decisions need to be made. PMID:26258634

  3. Ethnic and cultural challenges at the end of life: setting the scene.

    PubMed

    Brown, Edwina A

    2014-09-01

    Patients with advanced kidney disease come from diverse ethnic, cultural and religious backgrounds. This potentially causes conflict when considering end-of-life management for patients from minority ethnic groups in a Western healthcare system that is dominated by the principles of patient autonomy, beneficence, non-maleficence and avoiding futile care. This article explores the impact of religion and culture on truth telling and futile care at end of life.

  4. End-of-life training for paid carers working with people with learning disabilities.

    PubMed

    Codling, Mary; Knowles, Jane; Vevers, Ann

    2014-04-01

    People with learning disabilities are living longer lives. Over the past few years, research has explored the needs of people with learning disabilities, their families and learning disability professionals in relation to end-of-life care and death. However, little is known about the needs of paid carers and their experience of end-of-life care. This article discusses the development, implementation and evaluation of a study day about end-of-life care that was delivered to paid carers on two separate occasions in Berkshire Healthcare NHS Foundation Trust. A total of 43 paid carers attended and the days were well evaluated. The need for further training for paid carers who work with people with learning disabilities at the end of life was highlighted.

  5. Questions and answers on the Belgian model of integral end-of-life care: experiment? Prototype? : "Eu-euthanasia": the close historical, and evidently synergistic, relationship between palliative care and euthanasia in Belgium: an interview with a doctor involved in the early development of both and two of his successors.

    PubMed

    Bernheim, Jan L; Distelmans, Wim; Mullie, Arsène; Ashby, Michael A

    2014-12-01

    This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors.

  6. Use of Opioids and Sedatives at End-of-Life

    PubMed Central

    Sim, Shin Wei; Ho, Shirlynn; Kumar, Radha Krishna Lalit

    2014-01-01

    Despite their proven efficacy and safety, opioid and sedative use for palliation in patients afflicted with cancer in Singapore have been shown to be a fraction of that in other countries. This paper explores the various psychosocial and system-related factors that appear to propagate this conservative approach to care in what is largely a western-influenced care practice. A search for publications relating to sedative and opioid usage in Asia was performed on PubMed, Google, Google Scholar, World Health Organization, and Singapore's government agency websites using search terms such as “opioids,” “sedatives,” “palliation,” “end-of-life-care,” “pain management,” “palliative care,” “cancer pain,” “Asia,” “Singapore,” and “morphine.” Findings were classified into three broad groups – system-related, physician-related, and patient-related factors. A cautious medico-legal climate, shortage of physicians trained in palliative care, and lack of instruments for symptom assessment of patients at the end of life contribute to system-related barriers. Physician-related barriers include delayed access to palliative care due to late referrals, knowledge deficits in non-palliative medicine physicians, and sub-optimal care provided by palliative physicians. Patients' under-reporting of symptoms and fear of addiction, tolerance, and side effects of opioids and sedatives may lead to conservative opioid use in palliative care as well. System-related, physician-related, and patient-related factors play crucial roles in steering the management of palliative patients. Addressing and increasing the awareness of these factors may help ensure patients receive adequate relief and control of distressing symptoms. PMID:25125876

  7. SVN 9 End-Of-Life testing

    NASA Technical Reports Server (NTRS)

    Hatten, Gregory E.

    1995-01-01

    SVN 9 was a GPS Block I research and development satellite. When it was launched in Jun. 1984, questions regarding the future performance of atomic frequency standards in orbit remained to be answered. In Mar. 1994, after performing for twice its designed life span, SVN 9 was deactivated as a member of the operational GPS satellite constellation. During the next two months, U.S. Air Force and Rockwell personnel performed various tests to determine just how well the atomic frequency standards had withstood ten years in the space environment. The results of these tests are encouraging. With a full constellation of Block II/IIA satellites on orbit, as well as the anticipated launch of the Block IIR satellites, results from the end of life testing will be helpful in assuring the continued success of the GPS program.

  8. Describing Spirituality at the End of Life.

    PubMed

    Stephenson, Pam Shockey; Berry, Devon M

    2015-09-01

    Spirituality is salient to persons nearing the end of life (EOL). Unfortunately, researchers have not been able to agree on a universal definition of spirituality reducing the effectiveness of spiritual research. To advance spiritual knowledge and build an evidence base, researchers must develop creative ways to describe spirituality as it cannot be explicitly defined. A literature review was conducted to determine the common attributes that comprise the essence of spirituality, thereby creating a common ground on which to base spiritual research. Forty original research articles (2002 to 2012) focusing on EOL and including spiritual definitions/descriptions were reviewed. Analysis identified five attributes that most commonly described the essence of spirituality, including meaning, beliefs, connecting, self-transcendence, and value.

  9. Concordance of Family and Staff Member Reports about End of Life in Assisted Living and Nursing Homes

    ERIC Educational Resources Information Center

    Rich, Shayna E.; Williams, Christianna S.; Zimmerman, Sheryl

    2010-01-01

    Purpose: To identify differences in perspectives that may complicate the process of joint decision making at the end of life, this study determined the agreement of family and staff perspectives about end-of-life experiences in nursing homes and residential care/assisted living communities and whether family and staff roles, involvement in care,…

  10. The End of Life Nursing Education Nursing Consortium project.

    PubMed

    Ferrell, Betty; Malloy, Pam; Virani, Rose

    2015-04-01

    In 2000, the City of Hope Medical Center and the American Association of Colleges of Nursing (AACN) developed the End-of-Life Nursing Education Consortium (ELNEC)-Core curriculum to educate nurses and other healthcare professionals on end of life care, so that attention to the dying could be improved and their unique needs addressed. Since its inception, over 19,500 nurses and other professionals have attended the ELNEC train-the-trainer courses. Upon course completion, the participants, often nurse educators, returned to their schools, healthcare systems, and communities and introduced the ELNEC content into nursing curricula, annual competencies, and new employee orientation. In 2005, the national ELNEC Project Team concluded that an international curriculum should be developed. The first ELNEC International course was launched in 2006 in Salzburg, Austria. Since that time, trainers have come from 85 countries world-wide, and the curriculum has been translated into eight languages. In 2015, three international courses will be presented: in Beijing, China, Kipkaren, Kenya, and Salzburg, Austria.

  11. Ethics review: End of life legislation – the French model

    PubMed Central

    Baumann, Antoine; Audibert, Gérard; Claudot, Frédérique; Puybasset, Louis

    2009-01-01

    French law 2005-370 of April 22, 2005 (Leonetti's law) brings new rights to patients and clarifies medical practices regarding end of life care. This new law prohibits unreasonable obstinacy in investigations or therapeutics and authorizes the withholding or withdrawal of treatments when they appear "useless, disproportionate or having no other effect than solely the artificial preservation of life". Relief from pain is a fundamental right of patients. With regard to pain control, the law also allows doctors to dispense to patients "in an advanced or final phase of a serious and incurable affliction" anti-pain treatments as needed, even if these treatments, as a side effect, hasten their death. The drafting of advance directives regarding end of life constitutes a new right of patients. The decision to withdraw or withhold a treatment from a patient unable to express their will has to take into account the wishes they might have expressed through advance directives, and/or the wishes of a trusted person or, lastly, of the family. Before making any decision, physicians should respect a collegial medical procedure. Euthanasia defined as the act of terminating one's life on a patient's explicit request remains illegal. PMID:19291258

  12. Communication about cancer near the end of life.

    PubMed

    Back, Anthony L; Anderson, Wendy G; Bunch, Lynn; Marr, Lisa A; Wallace, James A; Yang, Holly B; Arnold, Robert M

    2008-10-01

    Cancer communication near the end of life has a growing evidence base, and requires clinicians to draw on a distinct set of communication skills. Patients with advanced and incurable cancers are dealing with the emotional impact of a life-limiting illness, treatment decisions that are complex and frequently involve consideration of clinical trials, and the challenges of sustaining hope while also having realistic goals. In this review, the authors sought to provide a guide to important evidence about communication for patients with advanced cancer regarding communication at diagnosis, discussing prognosis, decision making about palliative anticancer therapy and phase 1 trials, advance care planning, transitions in focus from anticancer to palliative care, and preparing patients and families for dying and death.

  13. Interventions at the end of life – a taxonomy for ‘overlapping consensus’

    PubMed Central

    2017-01-01

    Context: Around the world there is increasing interest in end of life issues. An unprecedented number of people dying in future decades will put new strains on families, communities, services and governments.  It will also have implications for representations of death and dying within society and for the overall orientation of health and social care. What interventions are emerging in the face of these challenges? Methods: We conceptualize a comprehensive taxonomy of interventions, defined as ‘organized responses to end of life issues’. Findings: We classify the range of end of life interventions into 10 substantive categories: policy, advocacy, educational, ethico-legal, service, clinical, research, cultural, intangible, self-determined. We distinguish between two empirical aspects of any end of life intervention: the ‘locus’ refers to the space or spaces in which it is situated; the ‘focus’ captures its distinct character and purpose. We also contend that end of life interventions can be seen conceptually in two ways – as ‘frames’ (organized responses that primarily construct a shared understanding of an end of life issue) or as ‘instruments’ (organized responses that assume a shared understanding and then move to act in that context). Conclusions: Our taxonomy opens up the debate about end of life interventions in new ways to provide protagonists, activists, policy makers, clinicians, researchers and educators with a comprehensive framework in which to place their endeavours and more effectively to assess their efficacy. Following the inspiration of political philosopher John Rawls, we seek to foster an ‘overlapping consensus’ on how interventions at the end of life can be construed, understood and assessed. PMID:28261674

  14. Choices at Space Station End of Life

    NASA Astrophysics Data System (ADS)

    Burke, J. D.; Coderre, K. M.; Dator, J. A.

    Extending International Space Station (ISS) operations will expand the scope for deciding its fate at its end of life. In this paper we examine the choices likely to be available at that distant unknown day when it is decided, for whatever reasons, to bring crew-directed engineering and science operations to a close. Of course a premature accidental termination is possible at any time, and measures to cope with that (and return to normal if possible) should be kept ready and augmented as ISS service capacities improve, but here we do not focus on accidents. Rather, we consider what may be done with an old but functioning spacecraft after it is declared surplus. We use the technique of Futures Studies to look at the choices. Without attempting prediction, futurists develop a set of empirically-based alternate futures, describe the likely consequences of each, and point to preferred outcomes. For the ISS at end of scheduled operation the choices are in three classes: DOWN, STAY, or UP. In the DOWN choice, after possible salvage and transfer of long-running investigations to another (e.g., Chinese-led) international station, the ISS is commanded to descend and burn up. The STAY choice, not viable in the long run, might be chosen to provide time for later decisions, but eventually it would prove impractical to continue re-boosting to maintain the station in Low Earth Orbit (LEO). In the UP choice the ISS is propelled, by heavy-lift boost impulses or a low-thrust spiral-out or a combination of both, into a high orbit with a lifetime of hundreds of years, opening the prospect of a wide variety of options to be compared in search of a preferred longer-term future. The decision to boost the ISS into a high orbit could be completely rational based on any of several arguments, or it could be partly irrational as in the case of the USS Constitution, an eighteenth- century warship saved from the ship-breakers by a poem.

  15. End-of-life management in patients with amyotrophic lateral sclerosis.

    PubMed

    Connolly, Sheelah; Galvin, Miriam; Hardiman, Orla

    2015-04-01

    Most health-care professionals are trained to promote and maintain life and often have difficulty when faced with the often rapid decline and death of people with terminal illnesses such as amyotrophic lateral sclerosis (ALS). By contrast, data suggest that early and open discussion of end-of-life issues with patients and families allows time for reflection and planning, can obviate the introduction of unwanted interventions or procedures, can provide reassurance, and can alleviate fear. Patients' perspectives regarding end-of-life interventions and use of technologies might differ from those of the health professionals involved in their care, and health-care professionals should recognise this and respect the patient's autonomy. Advance care directives can preserve autonomy, but their legal validity and use varies between countries. Clinical management of the end of life should aim to maximise quality of life of both the patient and caregiver and, when possible, incorporate appropriate palliation of distressing physical, psychosocial, and existential distress. Training of health-care professionals should include the development of communication skills that help to sensitively manage the inevitability of death. The emotional burden for health-care professionals caring for people with terminal neurological disease should be recognised, with structures and procedures developed to address compassion, fatigue, and the moral and ethical challenges related to providing end-of-life care.

  16. When Safe Oral Feeding Is Threatened: End-of-Life Options and Decisions

    ERIC Educational Resources Information Center

    Groher, Michael E.; Groher, Tammy Peutz

    2012-01-01

    Managing one's dysphagia at the end-of-life is challenging for the patient and the medical care team. Decisions surrounding oral feeding safety and the use of artificially administered hydration and nutrition require the medical care team to provide its best advice, taking into consideration the patient's health-related goals and the impact the…

  17. The impact of culture and religion on truth telling at the end of life.

    PubMed

    de Pentheny O'Kelly, Clarissa; Urch, Catherine; Brown, Edwina A

    2011-12-01

    Truth telling, a cardinal rule in Western medicine, is not a globally shared moral stance. Honest disclosure of terminal prognosis and diagnosis are regarded as imperative in preparing for the end of life. Yet in many cultures, truth concealment is common practice. In collectivist Asian and Muslim cultures, illness is a shared family affair. Consequently, decision making is family centred and beneficence and non-malfeasance play a dominant role in their ethical model, in contrast to patient autonomy in Western cultures. The 'four principles' are prevalent throughout Eastern and Western cultures, however, the weight with which they are considered and their understanding differ. The belief that a grave diagnosis or prognosis will extinguish hope in patients leads families to protect ill members from the truth. This denial of the truth, however, is linked with not losing faith in a cure. Thus, aggressive futile treatment can be expected. The challenge is to provide a health care service that is equable for all individuals in a given country. The British National Health Service provides care to all cultures but is bound by the legal principles and framework of the UK and aims for equity of provision by working within the UK ethical framework with legal and ethical norms being explained to all patients and relatives. This requires truth telling about prognosis and efficacy of potential treatments so that unrealistic expectations are not raised.

  18. The influence of culture on end-of-life decision making.

    PubMed

    Bullock, Karen

    2011-01-01

    In their research, scholars have documented racial and ethnic differences in end-of-life care preferences, which have translated into cultural barriers. However, few studies have explained the racial differences. In the present study, focus groups with semi-structured follow-up interviews were utilized to elicit explanations for variance in decision making in a sample of Black and White community-dwelling residents. Participants identified specific cultural beliefs, values, and communication patterns that can be used to promote cultural competency among practitioners who provide care at end of life.

  19. Implementation challenges in end-of-life research with adults with intellectual and developmental disabilities.

    PubMed

    Savage, Teresa A; Moro, Teresa Thalia; Boyden, Jackelyn Y; Brown, Allison A; Kavanaugh, Karen L

    2015-05-01

    Although the 4 million+people in the U.S. with an intellectual or developmental disability (I/DD) experience the same life expectancy as those in the general population, end-of-life research including these individuals is lacking and can be difficult to implement. As will be described in this paper, it is possible to overcome barriers to successfully include people with I/DD in end-of-life research. In this paper, the implementation challenges, feasibility, and implications for successful end-of-life research with individuals with I/DD using focus groups are described. Individuals with I/DD were able to discuss their experiences and views about end-of-life care. However, while people with I/DD made valuable contributions to the focus groups, there were several modifications needed in order to execute this study. In order to gain a complete picture of end-of-life care for people with I/DD, it is imperative to include them in research to the best of their ability. By anticipating issues related to recruitment, the consent process, setting, and support needs of participants, focus groups can be successfully implemented.

  20. Parental needs in infant's end-of-life and bereavement in NICU: A qualitative study

    PubMed Central

    Hasanpour, Marzieh; Sadeghi, Narges; Heidarzadeh, Mohammad

    2016-01-01

    Background and Aims: Newborn death is an unexpected outcome for parents. Parents face with several needs in infant end-of-life. The health care team is responsible for meet these needs. This qualitative study aim was to explore of parental needs in infant end-of-life and bereavement. Materials and Methods: For this qualitative study, 24 single semi-structure interviews were done. A qualitative content analysis method was used. Sampling conducted on purposeful with maximum variation in five Neonatal Intensive Care Unit (NICU) environments in Isfahan city. Inclusion criteria for nurses and doctors were having at least one experience of caring for an infant and their family at end-of-life. Inclusion criteria for parents and their families were having at least one infant at end-of-life or had lost their infant for 6 months before in NICU. Results: Data analysis uncovered two main themes. Family's support needs with two subthemes (family's support needs before infant's death and family's support needs after infant's death) and family's preparatory needs upon infant's death with two subthemes (management of the bad news of infant's death by treatment team and management of the bad news of infant's death by family). Discussion: Mourning mother's need for her husband's presence by her side, getting hospitalized in a separate room, and management of infant's death news by father and family were among items rarely pointed out in other studies. Exploration of these needs cab be helpful for the health care team for providing care. PMID:27500172

  1. Symptoms and problems in the end-of-life phase of high-grade glioma patients.

    PubMed

    Sizoo, Eefje M; Braam, Lies; Postma, Tjeerd J; Pasman, H Roeline W; Heimans, Jan J; Klein, Martin; Reijneveld, Jaap C; Taphoorn, Martin J B

    2010-11-01

    Despite multimodal treatment, it is not possible to cure high-grade glioma (HGG) patients. Therefore, the aim of treatment is not only to prolong life, but also to prevent deterioration of health-related quality of life as much as possible. When the patient's condition declines and no further tumor treatment seems realistic, patients in the Netherlands are often referred to a primary care physician for end-of-life care. This end-of-life phase has not been studied adequately yet. The purpose of this study was to explore specific problems and needs experienced in the end-of-life phase of patients with HGG. We retrospectively examined the files of 55 patients who received treatment in our outpatient clinic and died between January 2005 and August 2008. The clinical nurse specialist in neuro-oncology maintained contact on a regular basis with (relatives of) HGG patients once tumor treatment for recurrence was no longer given. She systematically asked for signs and symptoms. The majority of the patients experienced loss of consciousness and difficulty with swallowing, often arising in the week before death. Seizures occurred in nearly half of the patients in the end-of-life phase and more specifically in one-third of the patients in the week before dying. Other common symptoms reported in the end-of-life phase are progressive neurological deficits, incontinence, progressive cognitive deficits, and headache. Our study demonstrates that HGG patients, unlike the general cancer population, have specific symptoms in the end-of-life phase. Further research is needed in order to develop specific palliative care guidelines for these patients.

  2. Trends in medical end-of-life decision making in Flanders, Belgium 1998-2001-2007.

    PubMed

    Chambaere, Kenneth; Bilsen, Johan; Cohen, Joachim; Onwuteaka-Philipsen, Bregje D; Mortier, Freddy; Deliens, Luc

    2011-01-01

    In 2002, Belgium saw the enactment of 3 laws concerning euthanasia, palliative care, and patient rights that are likely to affect end-of-life decision making. This report examines trends in the occurrence and decision-making process of end-of-life practices in different patient groups since these legal changes. A large-scale retrospective survey in Flanders, Belgium, previously conducted in 1998 and 2001, was repeated in 2007. Questionnaires regarding end-of-life practices and the preceding decision-making process were mailed to physicians who certified a representative sample (N = 6927) of death certificates. The 2007 response rate was 58.4%. In patient groups in which the prevalence of life-ending drug use without explicit patient request has dropped, performance of euthanasia and assisted suicide has increased. The consistent increase in intensified pain and symptom alleviation was found in all patient groups except cancer patients. In 2007, competent patients were slightly more often involved in the discussion of end-of-life practices than in previous years. Over the years, involvement of the patient in decision making was consistently more likely among younger patients, cancer patients, and those dying at home. Physicians consulted their colleagues more often than in previous years for euthanasia and nontreatment decisions. The euthanasia law and emerging palliative care culture have substantially affected the occurrence and decision making for end-of-life practices in Belgium. Efforts are still needed to encourage shared end-of-life decision making, as some patients would benefit from advance care planning.

  3. [Issues and Challenges of End of Life at Home for the Treating Physician].

    PubMed

    Marthy, Sibylle

    2015-02-25

    Palliative care and end of life at home remains a challenge for the general practitioner. The success is related to many factors, including the situation of the patient, his social and family environment, the presence of the various health professionals and the physician's engagement. Beyond the medical-technical skills, he plays a central coordinating role in an interdisciplinary team regularly adjusted according to the patient's evolution. The positive emotional impact on bereaved relatives after the end of life at home is often underestimated by the physician.

  4. Advancing palliative and end-of-life science in cardiorespiratory populations: The contributions of nursing science.

    PubMed

    Grady, Patricia A

    Nursing science has a critical role to inform practice, promote health, and improve the lives of individuals across the lifespan who face the challenges of advanced cardiorespiratory disease. Since 1997, the National Institute of Nursing Research (NINR) has focused attention on the importance of palliative and end-of-life care for advanced heart failure and advanced pulmonary disease through the publication of multiple funding opportunity announcements and by supporting a cadre of nurse scientists that will continue to address new priorities and future directions for advancing palliative and end-of-life science in cardiorespiratory populations.

  5. Islam and end-of-life organ donation. Asking the right questions.

    PubMed

    Rady, Mohamed Y; Verheijde, Joseph L

    2009-07-01

    Organ transplantation has become an established treatment option for end-stage organ disease. Both living and end-of-life (so called deceased) organ donation narrow the gap between supply and demand for transplantable organs. Advances in human biology prove that death occurs as a gradual process over time and not as a single discrete event. Declaring death with either neurological criteria (heart-beating organ donation) or circulatory criteria (non-heart-beating organ donation) enables the procurement of transplantable organs before human death is complete, namely, from the incipiently dying donor. Thus, surgical procurement of organs from the incipiently dying donor is the proximate cause of death, raising new questions on end-of-life organ donation. It is imperative to first and foremost care for the patient as a dying person. International Muslim scholars should reevaluate previous Islamic rulings and provide guidance about current practice of end-of-life organ donation.

  6. Thirty-five years of end-of-life issues in US medical schools.

    PubMed

    Dickinson, George E

    2011-09-01

    The objective of this study was to examine US medical school offerings on end-of-life issues between 1975 and 2010. Data were obtained from a mailed survey to the US medical schools in 1975, 1980, 1985, 1990, 1995, 2000, 2005, and 2010. Survey response rates for the 8 points in time (in percentages) were 95, 96, 90, 90, 93, 92, 81, and 79, respectively. Between 1975 and 2010, the overall offerings in death and dying increased so that 100% of US medical schools, beginning in 2000, offered something on death and dying. A multidisciplinary-team approach continued over the 35-year period. Palliative care is offered to some extent in 99% of US medical schools today. Numerous end-of-life topics are currently covered in the curriculum. Increased attention to end-of-life issues in medical schools should enhance medical students' relationship with terminally ill patients and their families.

  7. End-of-life decisions in dutch neonatology.

    PubMed

    Moratti, Sofia

    2010-01-01

    This contribution describes the regulation of end-of-life decisions in neonatology in the Netherlands. An account is given of the process of formulating rules, which includes a report by the Dutch Association for Paediatrics, two Court rulings, a report by a Consultation Group appointed by the Ministry of Health and a professional Protocol regulating deliberate ending of life in neonatology that was subsequently adopted as the regulation of this type of decision-making at the national level. The paper presents Dutch and comparative data on the attitude of the medical profession towards end-of-life decisions in neonatology and the frequency of such decisions in medical practice.

  8. End of life and beyond as hidden curriculum.

    PubMed

    Condon, Barbara Backer; Grimsley, Catherine; Kelley, Teresa; Nissen, Mary Kay

    2014-01-01

    End-of-life experiences are unique. Most can vividly recall feelings during those times. Governing boards in the United States attempt to guide nursing faculty regarding end of life curriculum. Yet, the beliefs of faculty members arising from those unique experiences can alter the tone and message of what students are actually taught--often surfacing as hidden curriculum. In this column the authors discuss hidden curriculum while presenting the beliefs regarding end of life, of four nursing faculty members from a single university. Heightened awareness and respect for the beliefs of all faculty members within any university setting is imperative in decreasing the development of hidden curriculum.

  9. Micromanaging Death: Process Preferences, Values, and Goals in End-of-Life Medical Decision Making

    ERIC Educational Resources Information Center

    Hawkins, Nikki Ayers; Ditto, Peter H.; Danks, Joseph H.; Smucker, William D.

    2005-01-01

    Purpose: This study examined patients' and surrogates' attitudes about using advance directives to manage end-of-life medical care. It also explored process preferences, or how patients want decisions to be made. Design and Methods: Data come from the third wave of the Advance Directives, Values Assessment, and Communication Enhancement project, a…

  10. End-of-life issues in advanced dementia

    PubMed Central

    Arcand, Marcel

    2015-01-01

    Abstract Objective To answer frequently asked questions about management of end-stage pneumonia, poor nutritional intake, and dehydration in advanced dementia. Sources of information Ovid MEDLINE was searched for relevant articles published until February 2015. No level I studies were identified; most articles provided level III evidence. The symptom management suggestions are partially based on recent participation in a Delphi procedure to develop a guideline for optimal symptom relief for patients with pneumonia and dementia. Main message Feeding tubes are not recommended for patients with end-stage dementia. Comfort feeding by hand is preferable. Use of parenteral hydration might be helpful but can also contribute to discomfort at the end of life. Withholding or withdrawing artificial nutrition and hydration is generally not associated with manifestations of discomfort if mouth care is adequate. Because pneumonia usually causes considerable discomfort, clinicians should pay attention to symptom control. Sedation for agitation is often useful in patients with dementia in the terminal phase. Conclusion Symptomatic care is an appropriate option for end-stage manifestations of advanced dementia. The proposed symptom management guidelines are based on a literature review and expert consensus. PMID:25873701

  11. ["Dignity" at the end of life: ethical and deontologic reflections].

    PubMed

    Mazzon, Davide

    2015-12-01

    Bioethical reflection is often raised to qualify medical treatment in relation to the concept of "dignity" of the human being. In philosophy, the concept of human dignity is used to refer to the intrinsic value of every human being but it has been framed in many different ways depending on the theoretical matrix we refer to. According to Christian principles, the dignity of human beings resides on their being created in the image and likeness of God: hence, the holiness of life for the believer and the condemnation of all means of action intended to anticipate death from suicide to euthanasia. On the contrary, according to the liberal tradition, human dignity is especially expressed in the autonomy of every human being. The Italian and the German Constitutions recall the value of human dignity. In the article 32 of the Italian Constitution, the concept of dignity is taken into account when stating the autonomy of the individual decision-making about health treatment. This is confirmed by the Code of Medical Ethics (2014): the right to self-determination and the right of patients to decide for themselves in accordance with their own life plans, are at the core of the concept of "human dignity". For this reason, doctors should support and encourage the full right of every patient to be considered as an autonomous person until the end of life, affirming his dignity. The acronym ABCD (airway, breathing, circulation, drugs) synthetises the essentials of intensive care procedures in life-threatening events. The same acronym should guide our behavior in promoting dignity in clinical settings. Attitude: moving away from our certainties, to better understand the real nature of the sick person we are approaching. Behavior: always be inspired by kindness and respect. Compassion, that is, deep awareness of the suffering, coupled with the desire to bring relief. Dialogue, being open to know the human being "behind" disease. This approach, developed by Chochinov and called

  12. [Medical end-of-life decisions and assisted suicide].

    PubMed

    Bosshard, Georg

    2008-07-01

    Medical end-of-life decisions that potentially shorten life (Sterbehilfe) are normally divided into four categories: Passive Sterbehilfe refers to withholding or withdrawing life-prolonging measures, indirect Sterbehilfe refers to the use of agents such as opioids or sedatives to alleviate symptoms of a terminally ill patient, assisted suicide (Suizidbeihilfe or Beihilfe zum Suizid) refers to prescribing and/or supplying a lethal drug in order to help someone to end his own life, and active euthanasia - which is illegal in any circumstances - means a doctor actively ending a patients life. In passive and indirect euthanasia, the will of a competent patient, or the presumed will of an incompetent patient respectively, is crucial. Assisted suicide is not illegal according to the Swiss Penal Code as long as there are no motives of self-interest of the individual assisting, and the individual assisted has decisional capacity. However, for doctors participating in assisted suicide, specific requirements of medical due care have to be met. What this means in the context of assisted suicide has recently been elaborated by the Swiss Federal Court of Justice.

  13. Older Latinos' attitudes toward and comfort with end-of-life planning.

    PubMed

    Heyman, Janna C; Gutheil, Irene A

    2010-02-01

    The purpose of this study was to determine which of two educational interventions delivered in Spanish would influence Latino elders' attitudes toward and comfort with end-of-life planning in comparison with a control group receiving only standard information routinely provided. Using a posttest-only control group design, elders receiving home care services who agreed to participate were randomly assigned to one of three groups: Conversación A; Conversación B, with culturally relevant material added; and a control group. A one-way multivariate analysis of variance was conducted to determine the effect on the two dependent variables: attitudes toward end-of-life planning and comfort with end-of-life planning. Significant differences were found among the three groups on both outcome measures. Attitudes toward advance planning scores were significantly higher for both intervention groups compared with the control group. Although both intervention groups had higher comfort scores than the control group, only the Conversación A score was statistically different from that of the control group. The results of this study indicate that it may be possible to positively influence both attitudes toward and comfort with end-of-life planning among older Latinos receiving home care, through the use of a one-to-one protocol that is delivered in Spanish.

  14. End-of-Life and Palliative Care for People with Intellectual Disabilities Who Have Cancer or Other Life-Limiting Illness: A Review of the Literature and Available Resources

    ERIC Educational Resources Information Center

    Tuffrey-Wijne, Irene; Hogg, James; Curfs, Leopold

    2007-01-01

    Background: As patterns of morbidity and mortality are changing, more people with intellectual disabilities develop cancer or other life-limiting illness. This paper reviews the literature around the need of people with intellectual disabilities for palliative care. Methods: A range of databases and the World Wide Web were searched for relevant…

  15. Predicting hospital aggression in secure psychiatric care

    PubMed Central

    Priday, Lee J.; Ireland, Carol A.; Chu, Simon; Kilcoyne, Jennifer; Mulligan, Caroline

    2016-01-01

    Background Risk assessment instruments have become a preferred means for predicting future aggression, claiming to predict long-term aggression risk. Aims To investigate the predictive value over 12 months and 4 years of two commonly applied instruments (Historical, Clinical and Risk Management - 20 (HCR-20) and Violence Risk Appraisal Guide (VRAG)). Method Participants were adult male psychiatric patients detained in a high secure hospital. All had a diagnosis of personality disorder. The focus was on aggression in hospital. Results The actuarial risk assessment (VRAG) was generally performing better than the structured risk assessment (HCR-20), although neither approach performed particularly well overall. Any value in their predictive potential appeared focused on the longer time period under study (4 years) and was specific to certain types of aggression. Conclusions The value of these instruments for assessing aggression in hospital among patients with personality disorder in a high secure psychiatric setting is considered. Declaration of interest J.L.I., C.A.M. and J.K. are employed by the trust where the data were collected. Copyright and usage © The Royal College of Psychiatrists 2016. This is an open access article distributed under the terms of the Creative Commons Non-Commercial, No Derivatives (CC BY-NC-ND) licence. PMID:27703760

  16. Spirituality at the end of life: conceptualization of measurable aspects-a systematic review.

    PubMed

    Gijsberts, Marie-José H E; Echteld, Michael A; van der Steen, Jenny T; Muller, Martien T; Otten, René H J; Ribbe, Miel W; Deliens, Luc

    2011-07-01

    Although spiritual caregiving is a key domain of palliative care, it lacks a clear definition, which impedes both caregiving and research in this domain. The aim of this study was to conceptualize spirituality by identifying dimensions, based on instruments measuring spirituality in end-of-life populations. A systematic literature review was conducted. Literature published between 1980 and 2009, focussing on instruments measuring spirituality at the end of life was collected from the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO databases. Inclusion criteria were: (1) the studies provide empirical data collected with an instrument measuring spirituality or aspects of spirituality at the end of life; (2) the data report on a (subgroup) of an end-of-life population, and (3) the instrument is available in the public domain. Content validity was assessed according to a consensus-based method. From the items of the instruments, three investigators independently derived dimensions of spirituality at the end of life. In 36 articles that met the inclusion criteria we identified 24 instruments. Nine instruments with adequate content validity were used to identify dimensions of spirituality. To adequately represent the items of the instruments and to describe the relationships between the dimensions, a model defining spirituality was constructed. The model distinguishes the dimensions of Spiritual Well-being (e.g., peace), Spiritual Cognitive Behavioral Context (Spiritual Beliefs, Spiritual Activities, and Spiritual Relationships), and Spiritual Coping, and also indicates relationships between the dimensions. This model may help researchers to plan studies and to choose appropriate outcomes, and assist caregivers in planning spiritual care.

  17. [Preliminary proposals regarding of an italian law on end-of-life decision making].

    PubMed

    2015-11-01

    In contrast to other European countries (e.g., Germany, France, Spain, the UK), Italy's attempts to regulate end-of-life care have ended in 2009 in a clash of opinion involving lay and religious philosophers, legal experts, and politicians. Rooted in strife and widely criticized from the scientific, moral, and juridical points of view, a bill dealing solely with the issue of advance directives has been lying dormant in the Senate since 2009. The absence of legislation dealing effectively with the complexities of end-of-life care continues to create difficulties in Italian ICUs, for physicians, nurses, patients, and their families. To address this need, the Italian Society of Anesthesia, Analgesia and Intensive Care (SIAARTI) and Italian Society of Palliative Care, (SICP), together with the Department of the Pontifical Council for Culture's Courtyard of the Gentiles Foundation - established in 2009 to promote dialogue between "believers" and "nonbelievers" on issues that impact modern society - have now drafted a shared position paper highlighting the ethical and legal principles, that should inform future attempts to provide Italy with comprehensive laws for regulating end-of-life care in Italy. We report the shared position paper, which was presented in the Italian Senate on 17 September 2015.

  18. Physician-older patient communication at the end of life.

    PubMed

    Siegler, E L; Levin, B W

    2000-02-01

    Communication with dying patients and their families requires special skills to assist them in this extremely stressful period. This article begins with a case that illustrates many of the challenges of communicating with the dying. It then reviews the literature about communication with older patients at the end of life, focusing on physician-patient discussions, decision-making, advance directives, and cultural factors. The article concludes with a practical discussion of problems that physicians may encounter when working with older patients at the end of life and their families and recommendations to improve communication.

  19. Mediation and surrogate decision-making for LGBTQ families in the absence of an advance directive : comment on "Ethical challenges in end-of-life care for GLBTI individuals" by Colleen Cartwright.

    PubMed

    Wahlert, Lance; Fiester, Autumn

    2012-09-01

    In this commentary on a clinical ethics case pertaining to a same-sex couple that does not have explicit surrogate decision-making or hospital-visitation rights (in the face of objections from the family-of-origin of one of the queer partners), the authors invoke contemporary legal and policy standards on LGBTQ health care in the United States and abroad. Given this historical moment in which some clinical rights are guaranteed for LGBTQ families whilst others are in transition, the authors advocate for the implementation of clinical ethics mediation as the soundest and most humane form of resolution in matters where there is a dispute between family members about an incapacitated loved one. They argue that clinical ethics mediation is an ideal alternative solution because it works toward consensus about outcome, even where consensus about values is not achievable.

  20. Continuous subcutaneous levetiracetam in the management of seizures at the end of life: a case report.

    PubMed

    Wells, Geoffrey Howard; Mason, Louise D; Foreman, Emma; Chambers, John

    2016-03-01

    We report the case of a man who developed seizures on a background of recurrent metastatic squamous cell carcinoma with intracranial involvement. Initial seizure control with enteral levetiracetam was achieved, and when enteral and intravenous (i.v.) access was no longer available, a continuous subcutaneous infusion (CSCI) of levetiracetam successfully controlled his seizures without the need for sedating anticonvulsants. As a result, end-of-life care was able to be given with the patient retaining the ability to communicate with his family and healthcare staff. This report adds to the sparse but growing evidence base for the use of subcutaneous levetiracetam to manage seizures in palliative and end-of-life care.

  1. Beyond advance directives: importance of communication skills at the end of life.

    PubMed

    Tulsky, James A

    2005-07-20

    Patients and their families struggle with myriad choices concerning medical treatments that frequently precede death. Advance directives have been proposed as a tool to facilitate end-of-life decision making, yet frequently fail to achieve this goal. In the context of the case of a man with metastatic cancer for whom an advance directive was unable to prevent a traumatic death, I review the challenges in creating and implementing advance directives, discuss factors that can affect clear decision making; including trust, uncertainty, emotion, hope, and the presence of multiple medical providers; and offer practical suggestions for physicians. Advance care planning remains a useful tool for approaching conversations with patients about the end of life. However, such planning should occur within a framework that emphasizes responding to patient and family emotions and focuses more on goals for care and less on specific treatments.

  2. Self-determination, end-of-life decisions, and the role of nurse practitioners.

    PubMed

    Bradley, Heather

    2015-01-01

    Nurse practitioners should be aware that societal changes could lead to their being asked to actively assist terminally ill patients who wish to end their lives, as opposed to their current supportive role in palliative care. With physician staff shortages and the need for nurse practitioners to fill the gaps, end-of-life responsibilities could be placed in the hands of nurse practitioners, rather than being reserved for physicians alone (Sagon, 2013). End-of-life matters raise uncertainties about the nurse practitioner role because it differs state by state, relates to ethics, reflects the religious beliefs of those involved, and concerns the conflict of nurses simultaneously caring for their patients while advocating for their right to self-determination in choosing to end their lives.

  3. End of Life (Supporting a Terminally Ill Loved One)

    MedlinePlus

    Healthy Lifestyle End of life When terminal illness affects a loved one, it isn't always easy to know how to react. Find out how to offer support and ... support to a loved one who has a terminal illness can be challenging. What can you say ...

  4. Reconnection: having the end-of-life discussion with mom.

    PubMed

    Peng, Mandy H

    2015-02-01

    Learning how to speak with patients about end-of-life topics is often anxiety provoking for medical trainees. However, it also provides a unique opportunity for personal growth. The surprising reward of having such a conversation is presented in this reflection.

  5. Challenges and opportunities: communication near the end of life.

    PubMed

    Gauthier, Donna M

    2008-10-01

    While the nurse works on developing communication skills with the dying patient and his or her family, the goal should be to build an understanding of the patient and family's needs and goals. The principles and value of good communication near the end of life are reviewed. Practical approaches and suggestions for medical-surgical nurses to improve communication are provided.

  6. End-of-Life Preferences: A Theory-Driven Inventory

    ERIC Educational Resources Information Center

    Bonin-Scaon, Sylvie; Munoz Sastre, Maria Teresa; Chasseigne, Gerard; Sorum, Paul C.; Mullet, Etienne

    2009-01-01

    The study aimed at making a theory-driven inventory of end-of-life preferences. Participants were asked about a variety of preferences representing all eight motivational states described in Apter's Metamotivational Theory (AMT; Apter, 2001). Data from a convenience sample of 965 community participants and a convenience sample of 81 persons…

  7. Managing breathlessness: providing comfort at the end of life.

    PubMed

    Tice, Martha A

    2006-04-01

    Dyspnea is a common symptom at the end of life. It occurs as the result of a complex mix of physical, biochemical, and perceptual components. When patients and their healthcare providers focus on the "numbers" related to oxygenation, rather than comfort, the individual's quality of life can suffer.

  8. Evidence-based guidelines for pressure ulcer management at the end of life.

    PubMed

    Langemo, Diane; Haesler, Emily; Naylor, Wayne; Tippett, Aletha; Young, Trudie

    2015-05-01

    It is important to develop an individualised plan of care for people at the end of life to prevent pressure ulcers, and to treat them if they do occur. This article discusses patient and risk assessment, prevention and care for pressure ulcers for the palliative care patient and the recommendations given in the palliative care section of the Prevention and Treatment of Pressure Ulcers: Clinical Practice Guideline (National Pressure Ulcer Advisory Panel, European Pressure Ulcer Advisory Panel and Pan Pacific Pressure Injury Alliance, 2014).

  9. Diabetes management at the end of life: transitioning from tight glycemic control to comfort.

    PubMed

    Tice, Martha A

    2006-05-01

    Tight glycemic control has become the standard of care for prevention of the long-term side effects of diabetes mellitus. When individuals with diabetes approach the end of life from advanced cancer or another chronic illness, they often become anorexic. The result is an increased risk for hypoglycemic episodes. It is appropriate to shift the goal of therapy from tight control of blood sugar to maintaining comfort and enhancing quality of life.

  10. [End of life in neonatal medicine under the direction of French law].

    PubMed

    Dageville, C; Rameix, S; Andrini, P; Betrémieux, P; Jarreau, P-H; Kuhn, P; Oriot, D

    2007-10-01

    Two recent laws have significantly reformed the French Public Health Code: the law of March 4th 2002, related to the patient's rights and the quality of the health care system and the law of April 22nd 2005, related to the patient's rights and the end of life. These changes have prompted health care professionals involved in perinatal and neonatal medicine to update their considerations on the ethical aspects of the end of life in neonatal medicine. Therefore, the authors examined the clauses of the law related to the patient's rights and to the end of life, confronting them with the distinctive features of neonatal medicine. In this paper, the medical practices, which are either prohibited or authorized in the course of end of life are considered: prohibition of euthanasia, authorization for alleviating pain at the risk of shortening life, authorization for restricting, withholding or withdrawing treatments. Next, the justifications provided by the legislation to authorize these practices are analysed: prohibition of unreasonable obstinacy and respect for individual wishes. Then, the conditions required by the law to determine and to implement these acts are discussed: consultation with the healthcare staff and justified advice from a consulting physician, consideration of parental opinion, registration of the decision and its justifications into the patient's medical file, protection of the dying patient's dignity and preservation of his life quality by providing palliative care. Lastly, we report the terms of the ethical dilemma which may occur in the area of neonatal medicine in spite of genuine and persevering efforts in order to conciliate legal requirement and ethical responsibility.

  11. [Therapeutic Aggressiveness and Liquid Oncology].

    PubMed

    Barón Duarte, F J; Rodríguez Calvo, M S; Amor Pan, J R

    2017-01-01

    Aggressiveness criteria proposed in the scientific literature a decade ago provide a quality judgment and are a reference in the care of patients with advanced cancer, but their use is not generalized in the evaluation of Oncology Services. In this paper we analyze the therapeutic aggressiveness, according to standard criteria, in 1.001 patients with advanced cancer who died in our Institution between 2010 and 2013. The results seem to show that aggressiveness at the end of life is present more frequently than experts recommend. About 25% of patients fulfill at least one criterion of aggressiveness. This result could be explained by a liquid Oncology which does not prioritize the patient as a moral subject in the clinical appointment. Medical care is oriented to necessities and must be articulated in a model focused on dignity and communication. Its implementation through Advanced Care Planning, consideration of patient's values and preferences, and Limitation of therapeutic effort are ways to reduce aggressiveness and improve clinical practice at the end of life. We need to encourage synergic and proactive attitudes, adding the best of cancer research with the best clinical care for the benefit of human being, moral subject and main goal of Medicine.

  12. Physician-perceived contradictions in end-of-life communication: toward a self-report measurement scale.

    PubMed

    Amati, Rebecca; Hannawa, Annegret F

    2015-01-01

    Communication is undoubtedly a critical element of competent end-of-life care. However, physicians commonly lack communication skills in this particular care context. Theoretically grounded, evidence-based guidelines are needed to enhance physicians' communication with patients and their families in this important time of their lives. To address this need, this study tests and validates a Contradictions in End-of-Life Communication (CEOLC) scale, which disentangles the relational contradictions physicians commonly experience when communicating with end-of-life patients. Exploratory factors analysis confirmed the presence of eight physician-perceived dialectical tensions, reflecting three latent factors of (1) integration, (2) expression, and (3) dominance. Furthermore, a number of significant intercultural differences were found in cross-cultural comparisons of the scale in U.S., Swiss, and Italian physician samples. Thus, this investigation introduces a heuristic assessment tool that aids a better understanding of the dialectical contradictions physicians experience in their interactions with end-of-life patients. The CEOLC scale can be used to gather empirical evidence that may eventually support the development of evidence-based guidelines and skills training toward improved end-of-life care.

  13. Talking about end-of-life preferences in marriage: applying the theory of motivated information management.

    PubMed

    Rafferty, Katherine A; Cramer, Emily; Priddis, DeAnne; Allen, Mike

    2015-01-01

    The theory of motivated information management (TMIM) provides one framework to examine information-seeking behaviors, especially in conversations involving sensitive or difficult information such as preferences for end-of-life (EOL) care. The spouse plays a significant role in decision making surrounding EOL care. Consequently, individuals need information about spouses' EOL preferences in order to ensure carrying out those desires. Our findings support the value of TMIM as a framework to understand factors that influence couples' EOL care information-seeking behaviors. In support of the theory, we provide factors that influence the initiation or avoidance of EOL conversations between spouses.

  14. End of Life Operations for LEO and GEO Satellites: 30 Years of Continuous Improvement

    NASA Astrophysics Data System (ADS)

    Fremeaux, Claire; Moussi, Aurelie; Vintenat, Lionel; Moulin, Michel

    2013-08-01

    CNES is celebrating in 2013 its 40th year of satellites operations with nearly 40 satellites cared for from Symphony 1 (1973) to Pleiades 1B (2012). Half of them reached its end of mission. Although they were not designed for it, CNES imagined, prepared and executed end-of life operations for geostationary and low earth orbit satellites, in accordance with its strong involvement at international level in favour of space activity sustainability and space debris mitigation. With increasing experience, efficiency and completeness of operations have strongly improved: optimization of resources, precise orbit and eccentricity management, collision risk concern, controlled fluidic and electric passivation, concern for degraded or emergency cases… This paper presents the evolution and improvement of end of life operations handled by CNES for 30 years, with a highlight on the last evolutions in the whole process since the French Space Act came into force.

  15. Family response to end-of-life education: differences by ethnicity and stage of caregiving.

    PubMed

    Braun, Kathryn L; Karel, Harumi; Zir, Ana

    2006-01-01

    The authors developed and tested 5 educational booklets to improve end-of-life knowledge, attitudes, intention, and practices in a multiethnic sample of family caregivers of well, homebound, and institutionalized elders. Of 570 participants, 424 (74%) read at least 1 booklet and completed pretests and posttests. At 3-month follow-up, small improvements were seen in completion of advance directives, and significant increases were seen in proportions of caregivers with funeral or burial plans and willingness to consider hospice. The booklets had wide appeal, but end-of-life measures varied by care-giver stage and ethnicity, suggesting that these factors need to be considered in developing education interventions for family caregivers.

  16. End-of-Life Care for People Who Have Cancer

    MedlinePlus

    ... people often have episodes of confusion or waking dreams. They may get confused about time, place, and ... They can let them share their visions and dreams, not trying to talk them out of what ...

  17. [End of life in neonatology: palliative care integration].

    PubMed

    Soares, Célia; Rodrigues, Manuela; Rocha, Gustavo; Martins, Angelina; Guimarães, Hercília

    2013-01-01

    Introdução: A limitação terapêutica e a implementação dos cuidados paliativos em Neonatologia revestem-se de extrema relevância na atualidade e são já uma realidade com tendência crescente em vários países. Não obstante, em Portugal, os estudos, recomendações e protocolos oficiais no que diz respeito às questões em fim de vida são ainda escassos.Material e Métodos: Analisamos retrospetivamente os processos clínicos dos recém-nascidos falecidos na Unidade de Cuidados Intensivos do Centro Hospitalar de São João no período de 2010 a 2012 e comparamos os resultados com os obtidos num estudo realizado na mesma Unidade correspondente aos períodos 1992-1995 e 2002-2005.Resultados: Na população estudada as anomalias congénitas foram a causa de morte em 57,1% casos, a prematuridade extrema em 18,4% casos e a infeção em 16,3%. No que refere ao ‘modo de morrer’, a paragem cardiorrespiratória irreversível às manobras de reanimação observou-se em 57,1% casos; 20,4% faleceram após abstenção de tratamento e 22,4% após suspensão de tratamento. Verificaram-se diferenças significativas para o ‘modo de morrer’ e as variáveis tempo de internamento e presença dos pais no momento da morte. Em 28,6% casos houve registo de tomada de decisão pela limitação terapêutica e adoção de cuidados paliativos e em 16,3% decisão de não reanimar. Para as duas últimas registou-se um aumento ao longo das três décadas analisadas. Também se registou uma tendência crescente para a utilização de escala de avaliação de dor neonatal, opióides e sedativos, presença parental no momento da morte, reuniões entre pais e neonatologistas, reuniões interdisciplinares e apoio psicológico aos pais.Conclusão: Este estudo revela uma tendência crescente para a integração de medidas de limitação terapêutica e de cuidados paliativos na UCIN estudada. Contudo, há ainda muito a desenvolver, nomeadamente no que refere à investigação, formação dos profissionais e debate ético.

  18. Buddhist ethics and end-of-life care decisions.

    PubMed

    McCormick, Andrew J

    2013-01-01

    Buddhism has grown in the United States in the past 50 years. Immigrants come following long traditions. American converts are more eclectic. The first Buddhist precept prohibiting harm to living things, the virtue of compassion, and the goal of a peaceful death provide guidance for ethical decision making regarding organ donation, withholding and withdrawing life-sustaining treatment, voluntary cessation of eating, physician aid in dying, and euthanasia. Concepts and views from three Buddhist traditions and views of master practitioners are presented. Case examples illustrate some of the differences within Buddhism. Suggestions for social workers are provided.

  19. Typology of end-of-life priorities in Saudi females: averaging analysis and Q-methodology

    PubMed Central

    Hammami, Muhammad M; Hammami, Safa; Amer, Hala A; Khodr, Nesrine A

    2016-01-01

    Background Understanding culture-and sex-related end-of-life preferences is essential to provide quality end-of-life care. We have previously explored end-of-life choices in Saudi males and found important culture-related differences and that Q-methodology is useful in identifying intraculture, opinion-based groups. Here, we explore Saudi females’ end-of-life choices. Methods A volunteer sample of 68 females rank-ordered 47 opinion statements on end-of-life issues into a nine-category symmetrical distribution. The ranking scores of the statements were analyzed by averaging analysis and Q-methodology. Results The mean age of the females in the sample was 30.3 years (range, 19–55 years). Among them, 51% reported average religiosity, 78% reported very good health, 79% reported very good life quality, and 100% reported high-school education or more. The extreme five overall priorities were to be able to say the statement of faith, be at peace with God, die without having the body exposed, maintain dignity, and resolve all conflicts. The extreme five overall dis-priorities were to die in the hospital, die well dressed, be informed about impending death by family/friends rather than doctor, die at peak of life, and not know if one has a fatal illness. Q-methodology identified five opinion-based groups with qualitatively different characteristics: “physical and emotional privacy concerned, family caring” (younger, lower religiosity), “whole person” (higher religiosity), “pain and informational privacy concerned” (lower life quality), “decisional privacy concerned” (older, higher life quality), and “life quantity concerned, family dependent” (high life quality, low life satisfaction). Out of the extreme 14 priorities/dis-priorities for each group, 21%–50% were not represented among the extreme 20 priorities/dis-priorities for the entire sample. Conclusion Consistent with the previously reported findings in Saudi males, transcendence and dying in

  20. A conceptual analysis of spirituality at the end of life.

    PubMed

    Vachon, Mélanie; Fillion, Lise; Achille, Marie

    2009-01-01

    The definition of spirituality is the subject of endless debates in the empirical literature. This content analysis sought to: (1) exhaustively review the empirical literature on end-of-life spirituality to extract definitional elements of this concept and (2) elaborate on these definitional elements to create an integrative and inclusive definition of end-of-life spirituality based on the items retrieved. A search of the literature on spirituality published in the last 10 years was conducted via the the PsychINFO and MEDLINE databases. Seventy-one articles were selected based on specific inclusion criteria. A qualitative thematic analysis yielded 11 dimensions for the concept of end-of-life spirituality, namely: (1) meaning and purpose in life, (2) self-transcendence, (3) transcendence with a higher being, (4) feelings of communion and mutuality, (5) beliefs and faith, (6) hope, (7) attitude toward death, (8) appreciation of life, (9) reflection upon fundamental values, (10) the developmental nature of spirituality, and (11) its conscious aspect. The definition derived from this concept analysis, after being tested empirically, may be useful in informing the development of new measures of spirituality and new protocols to assess spirituality in clinical settings.

  1. Pacemaker deactivation: withdrawal of support or active ending of life?

    PubMed

    Huddle, Thomas S; Amos Bailey, F

    2012-12-01

    In spite of ethical analyses assimilating the palliative deactivation of pacemakers to commonly accepted withdrawings of life-sustaining therapy, many clinicians remain ethically uncomfortable with pacemaker deactivation at the end of life. Various reasons have been posited for this discomfort. Some cardiologists have suggested that reluctance to deactivate pacemakers may stem from a sense that the pacemaker has become part of the patient's "self." The authors suggest that Daniel Sulmasy is correct to contend that any such identification of the pacemaker is misguided. The authors argue that clinicians uncomfortable with pacemaker deactivation are nevertheless correct to see it as incompatible with the traditional medical ethics of withdrawal of support. Traditional medical ethics is presently taken by many to sanction pacemaker deactivation when such deactivation honors the patient's right to refuse treatment. The authors suggest that the right to refuse treatment applies to treatments involving ongoing physician agency. This right cannot underwrite patient demands that physicians reverse the effects of treatments previously administered, in which ongoing physician agency is no longer implicated. The permanently indwelling pacemaker is best seen as such a treatment. As such, its deactivation in the pacemaker-dependent patient is best seen not as withdrawal of support but as active ending of life. That being the case, clinicians adhering to the usual ethical analysis of withdrawal of support are correct to be uncomfortable with pacemaker deactivation at the end of life.

  2. The influence of death attitudes and knowledge of end of life options on attitudes toward physician-assisted suicide.

    PubMed

    Kopp, Steven W

    End of life decisions, such as physician-assisted suicide (PAS), have continued to be controversial as health care policy, moral, and individual health care issues. This study considers knowledge of end of life options and death attitudes as predictors of attitudes toward PAS. Data were gathered from approximately 300 adults through a mailing sent to a household research panel. Validated measures of attitudes toward PAS, knowledge about that state's assisted suicide laws, demographics, and attitudes toward death as measured through the Death Attitude Profile-Revised (DAP-R) were collected and analyzed. The data indicate that attitudes toward PAS are a function of knowledge of end of life options as well as death attitudinal factors.

  3. Partner-guided cancer pain management at the end of life: a preliminary study.

    PubMed

    Keefe, Francis J; Ahles, Tim A; Sutton, Linda; Dalton, JoAnn; Baucom, Don; Pope, Mary Susan; Knowles, Verena; McKinstry, Elizabeth; Furstenberg, Charlotte; Syrjala, Karen; Waters, Sandra J; McKee, Daphne; McBride, Colleen; Rumble, Meredith; Scipio, Cindy

    2005-03-01

    This preliminary study tested the efficacy of a partner-guided cancer pain management protocol for patients who are at the end of life. Seventy-eight advanced cancer patients meeting criteria for hospice eligibility and their partners were randomly assigned to a partner-guided pain management training intervention, or usual care control condition. The partner-guided pain management training protocol was a three-session intervention conducted in patients' homes that integrated educational information about cancer pain with systematic training of patients and partners in cognitive and behavioral pain coping skills. Data analyses revealed that the partner-guided pain management protocol produced significant increases in partners' ratings of their self-efficacy for helping the patient control pain and self-efficacy for controlling other symptoms. Partners receiving this training also showed a trend to report improvements in their levels of caregiver strain. Overall, the results of this preliminary study suggest that a partner-guided pain management protocol may have benefits in the context of cancer pain at the end of life. Given the significance of pain at the end of life, future research in this area appears warranted.

  4. Unethical bunglers or humane professionals? Discussions in the media of end-of-life treatment decisions.

    PubMed

    Hildén, Hanna-Mari; Honkasalo, Marja-Liisa

    2006-01-01

    We studied media discussions of end-of-life decision making to find out how the doctor-patient relationship is portrayed and what types of positions the media takes and how it is represented by other discussion participants in this context. The significance of the end-of-life decision making is related to the fact that it forms a contested site for the realization of patient autonomy. Our material consisted of two newspaper discussions and one television program. In all three samples, the consumerist physician-patient relationship model was promoted in the context of end-of-life decision making by the media representatives and the laypeople (patients, relatives, and a patient advocate). In the first, the media representatives make use of the romance narrative, which presents physicians as villains, and constructs patients as knowledgeable and competent 'ordinary heroes'. This justifies public scrutiny of healthcare. In the second sample, the relatives stress their competence but now by appealing to their knowledge and caring for the patient. This promotes their right to make decisions for patients. In the third sample, the journalist again pictures patients as 'ordinary heroes' who acquire their knowledge from the media. Patients are now empowered as consumers of healthcare. In conclusion, the consumerist doctor-patient relationship is promoted and the media's position as the source of information and as patient advocate is stabilized.

  5. Contagion of Aggression in Day Care Classrooms as a Function of Peer and Teacher Responses.

    ERIC Educational Resources Information Center

    Goldstein, Naomi E.; Arnold, David H.; Rosenberg, Jessica L.; Stowe, Rebecca M.; Ortiz, Camilo

    2001-01-01

    This study examined whether aggression is contagious in day care classrooms. In a low-income, urban day care center, it was hypothesized that aggression was more likely to occur immediately following an aggressive act than when no aggression occurred. The prediction was tested using a newly developed randomization process and the hypothesis was…

  6. Clinician confidence about conversations at the end of life is strengthened using the four habits approach.

    PubMed

    Runkle, Cecilia; Wu, Elizabeth; Wang, Edward C; Gordon, Geoffrey H; Frankel, Richard

    2008-01-01

    Can attending a communication skills workshop focused on advance care planning, shifting focus to palliative care, personal grief, managing anger, and culture and communication result in changes in attitudes and knowledge? One hundred and three clinicians completed surveys prior to and following the workshop resulting in significant changes in knowledge, attitudes and intent to change that persisted for at least 3 months. As most clinicians are not routinely exposed to learning communication skills for end-of-life conversations, opportunities to practice these skills in a safe supportive environment should be made available in medical schools, residency programs, and in the practice community.

  7. End-of-life, euthanasia, and assisted suicide: An update on the situation in France.

    PubMed

    Aubry, R

    2016-12-01

    On February 2, 2016, the French parliament adopted legislation creating new rights for the terminally ill. The text modifies and reinforces the rights of patients to end-of-life care and strengthens the status of surrogate decision makers. Under the new regulations, advance directives become legally binding though not unenforceable. Two types of advance directives are distinguished depending on whether the person is suffering or not from a serious illness when drafting them. The attending physician must abide by the patient's advance directives except in three situations: there is a life-threatening emergency; the directives are manifestly inappropriate; the directives are not compatible with the patient's medical condition. There is no time limit on the validity of advance directives. They are to be written in concordance with a model elaborated by the French superior health authority. This model takes into account the person's knowledge (or not) of having a serious illness when drafting his/her advance directives. In all likelihood, physicians will be called upon to help patients elaborate their advance directives. The law also has a provision for a national registry - potentially the shared medical file - to be designed as a reference source to facilitate storage, accessibility and safety of advance directives. The law introduces the right to continuous deep sedation until death in three specific situations: (i) at the patient's request when the short-term prognosis is death and continuous deep sedation is the only alternative for relieving the patient's suffering or one or more otherwise uncontrollable symptoms; (ii) at the patient's request when the patient chooses to withdraw artificial life-sustaining treatment and such withdrawal would be rapidly life-shortening and susceptible to cause unbearable suffering; (iii) when the patient is unable to express his/her wishes and the collegiate medical decision is to withdraw aggressive futile life

  8. Identifying changes in the support networks of end-of-life carers using social network analysis.

    PubMed

    Leonard, Rosemary; Horsfall, Debbie; Noonan, Kerrie

    2015-06-01

    End-of-life caring is often associated with reduced social networks for both the dying person and for the carer. However, those adopting a community participation and development approach, see the potential for the expansion and strengthening of networks. This paper uses Knox, Savage and Harvey's definitions of three generations social network analysis to analyse the caring networks of people with a terminal illness who are being cared for at home and identifies changes in these caring networks that occurred over the period of caring. Participatory network mapping of initial and current networks was used in nine focus groups. The analysis used key concepts from social network analysis (size, density, transitivity, betweenness and local clustering) together with qualitative analyses of the group's reflections on the maps. The results showed an increase in the size of the networks and that ties between the original members of the network strengthened. The qualitative data revealed the importance between core and peripheral network members and the diverse contributions of the network members. The research supports the value of third generation social network analysis and the potential for end-of-life caring to build social capital.

  9. Choice and compassion at the end of life: A critical analysis of recent English policy discourse.

    PubMed

    Borgstrom, Erica; Walter, Tony

    2015-07-01

    End of life care in England has recently been framed by two very different discourses. One (connected to advance care planning) promotes personal choice, the other promotes compassionate care; both are prominent in professional, policy and media settings. The article outlines the history of who promoted each discourse from 2008 to early 2015, when, why and how and this was done. Each discourse is then critically analysed from a standpoint that takes account of bodily decline, structural constraints, and human relationality. We focus on the biggest group of those nearing the end of their life, namely frail very old people suffering multiple conditions. In their care within contemporary healthcare organisations, choice becomes a tick box and compassion a commodity. Informed choice, whether at the end of life or in advance of it, does not guarantee the death the person wants, especially for those dying of conditions other than cancer and in the absence of universally available skilled and compassionate care. Enabling healthcare staff to provide compassionate, relational care, however, implies reversing the philosophical, political and financial direction of healthcare in the UK and most other Anglophone countries.

  10. Selection Bias in Family Reports on End of Life with Dementia in Nursing Homes

    PubMed Central

    Deliens, Luc; Ribbe, Miel W.; Onwuteaka-Philipsen, Bregje D.

    2012-01-01

    Abstract Background : Selective participation in retrospective studies of families recruited after the patient's death may threaten generalizability of reports on end-of-life experiences. Objectives To assess possible selection bias in retrospective study of dementia at the end of life using family reports. Methods Two physician teams covering six nursing home facilities in the Netherlands reported on 117 of 119 consecutive decedents within two weeks after death unaware of after-death family participation in the study. They reported on characteristics; treatment and care; overall patient outcomes such as comfort, nursing care, and outcomes; and their own perspectives on the experience. We compared results between decedents with and without family participation. Results The family response rate was 55%. There were no significant differences based on participation versus nonparticipation in demographics and other nursing home resident characteristics, treatment and care, or overall resident outcome. However, among participating families, physicians perceived higher-quality aspects of nursing care and outcome, better consensus between staff and family on treatment, and a more peaceful death. Participation was less likely with involvement of a new family member in the last month. Conclusions Families may be more likely to participate in research with more harmonious teamwork in end-of-life caregiving. Where family participation is an enrollment criterion, comparing demographics alone may not capture possible selection bias, especially in more subjective measures. Selection bias toward more positive experiences, which may include the physician's and probably also the family's experiences, should be considered if representativeness is aimed for. Future work should address selection bias in other palliative settings and countries, and with prospective recruitment. PMID:23153076

  11. Institutional disposition and management of end-of-life electronics.

    PubMed

    Babbitt, Callie W; Williams, Eric; Kahhat, Ramzy

    2011-06-15

    Institutions both public and private face a challenge to develop policies to manage purchase, use, and disposal of electronics. Environmental considerations play an increasing role in addition to traditional factors of cost, performance and security. Characterizing current disposition practices for end-of-life electronics is a key step in developing policies that prevent negative environmental and health impacts while maximizing potential for positive social and economic benefits though reuse. To provide a baseline, we develop the first characterization of quantity, value, disposition, and flows of end-of-life electronics at a major U.S. educational institution. Results of the empirical study indicate that most end-of-first-life electronics were resold through public auction to individuals and small companies who refurbish working equipment for resale or sell unusable products for reclamation of scrap metal. Desktop and laptop computers sold for refurbishing and resale averaged U.S. $20-100 per unit, with computers sold directly to individuals for reuse reaching $250-350 per unit. This detailed assessment was coupled with a benchmarking survey of end-of-life electronics management practices at other U.S. universities. Survey results indicate that while auctions are still commonplace, an increasing number of institutions are responding to environmental concerns by creating partnerships with local recycling and resale entities and mandating domestic recycling. We use the analyses of current disposition practices as input to discuss institutional strategies for managing electronics. One key issue is the tension between benefits of used equipment sales, in terms of income for the institution and increased reuse for society, and the environmental risks because of unknown downstream practices.

  12. Death Is Certain, Strategy Isn't: Assessing the Robert Wood Johnson Foundation's End-of-Life Grant Making

    ERIC Educational Resources Information Center

    Patrizi, Patricia A.

    2010-01-01

    The author discusses an assessment of the Robert Wood Johnson Foundation's work over a 20-year period to improve end-of-life care in America. The case illustrates the evolution of the strategy from one focused on a multiyear randomized control trial of a series of hospital-based interventions that produced findings of "no effects" into several…

  13. End-of-Life Decision Making: A Preliminary Outline for Preparing Counselors to Work with Terminally Ill Individuals

    ERIC Educational Resources Information Center

    Duba, Jill D.; Magenta, Mary

    2008-01-01

    End-of-life care is continuously becoming an issue of paramount importance given an increase in medical advances, the aging of the population, and the movement toward contributing toward a quality of life among terminally ill patients. However, there is a dearth in literature related to this topic specifically in terms of preparing counselors to…

  14. 76 FR 47596 - Notice of Scientific Summit; The Science of Compassion-Future Directions in End-of-Life and...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-08-05

    ... HUMAN SERVICES National Institutes of Health Notice of Scientific Summit; The Science of Compassion--Future Directions in End-of-Life and Palliative Care SUMMARY: Notice is hereby given that the National Institute of Nursing Research (NINR), National Institutes of Health (NIH), Department of Health and...

  15. Rural District Nursing Experiences of Successful Advocacy for Person-Centered End-of-Life Choice.

    PubMed

    Reed, Frances M; Fitzgerald, Les; Bish, Melanie R

    2016-05-05

    Choices in care during the end stages of life are limited by the lack of resources and access for rural people. Nursing advocacy based on the holistic understanding of people and their rural communities may increase the opportunity for choice and improve the quality of care for people living and dying at home. Pragmatism and nurse agency theory were used for a practical exploration of how district nurses successfully advocate for rural Australian end-of-life goals to begin the development of a practice model. In two stages of data collection, rural district nurse informants (N = 7) were given the opportunity to reflect on successful advocacy and to write about their experiences before undertaking further in-depth exploration in interviews. They defined successful advocacy as "caring" that empowers people in the "big and small" personal goals important for quality of life. The concepts described that enable successful advocacy were organized into a network with three main themes of "willing" investment in holistic person-centered care, "knowing" people and resources, and feeling "supported." The thematic network description provides deep insight into the emotional skill and moral agency involved in successful end-of-life nurse advocacy and can be used as a sound basis for modeling and testing in future research.

  16. Technology survey of nursing programs: implications for electronic end-of-life teaching tool development.

    PubMed

    Wells, Marjorie J; Wilkie, Diana J; Brown, Marie-Annette; Corless, Inge B; Farber, Stuart J; Judge, M Kay M; Shannon, Sarah E

    2003-01-01

    From an online survey of current technological capabilities of US undergraduate nursing programs, we found almost universal use of Microsoft Windows-based computers and Microsoft Office Suite software. Netscape and Microsoft Internet Explorer were the most popular browsers for Internet access. The survey also assessed faculty preferences for end-of-life care teaching materials and found that nurse educators preferred simple easy-to-use tools provided on CD-ROM or the Internet, with instructions provided via CD-ROM, the Internet, and demonstration workshops. Our findings have numerous implications for the development of electronic teaching materials for nursing.

  17. International Space Station End-of-Life Probabilistic Risk Assessment

    NASA Technical Reports Server (NTRS)

    Duncan, Gary

    2014-01-01

    Although there are ongoing efforts to extend the ISS life cycle through 2028, the International Space Station (ISS) end-of-life (EOL) cycle is currently scheduled for 2020. The EOL for the ISS will require de-orbiting the ISS. This will be the largest manmade object ever to be de-orbited, therefore safely de-orbiting the station will be a very complex problem. This process is being planned by NASA and its international partners. Numerous factors will need to be considered to accomplish this such as target corridors, orbits, altitude, drag, maneuvering capabilities, debris mapping etc. The ISS EOL Probabilistic Risk Assessment (PRA) will play a part in this process by estimating the reliability of the hardware supplying the maneuvering capabilities. The PRA will model the probability of failure of the systems supplying and controlling the thrust needed to aid in the de-orbit maneuvering.

  18. International Space Station End-of-Life Probabilistic Risk Assessment

    NASA Technical Reports Server (NTRS)

    Duncan, Gary W.

    2014-01-01

    The International Space Station (ISS) end-of-life (EOL) cycle is currently scheduled for 2020, although there are ongoing efforts to extend ISS life cycle through 2028. The EOL for the ISS will require deorbiting the ISS. This will be the largest manmade object ever to be de-orbited therefore safely deorbiting the station will be a very complex problem. This process is being planned by NASA and its international partners. Numerous factors will need to be considered to accomplish this such as target corridors, orbits, altitude, drag, maneuvering capabilities etc. The ISS EOL Probabilistic Risk Assessment (PRA) will play a part in this process by estimating the reliability of the hardware supplying the maneuvering capabilities. The PRA will model the probability of failure of the systems supplying and controlling the thrust needed to aid in the de-orbit maneuvering.

  19. End of life, chronic illness, and trans-identities.

    PubMed

    Witten, Tarynn M

    2014-01-01

    In this study, the experiences and needs of a sample of 1,963 current, global, English-speaking, transgender-identified adults responding to the Transgender MetLife Survey (TMLS) as related to a number of later-life and end-of-life (EOL) preparations and concerns were examined. EOL concerns are integrated with concerns and challenges around chronic illness and disability. Overall, this population was significantly ill-prepared for the major legalities and events that occur in the later to EOL time periods. The population was found to harbor significant fears around the future. Drawing on the author's decades of survey research in transgender aging and case data along with current scientific and online literature, illustrative quotations and case examples are provided.

  20. End-of-life preferences: a theory-driven inventory.

    PubMed

    Bonin-Scaon, Sylvie; Sastre, María Teresa Muñoz; Chasseigne, Gérard; Sorum, Paul C; Mullet, Etienne

    2009-01-01

    The study aimed at making a theory-driven inventory of end-of-life preferences. Participants were asked about a variety of preferences representing all eight motivational states described in Apter's Metamotivational Theory (AMT; Apter, 2001). Data from a convenience sample of 965 community participants and a convenience sample of 81 persons suffering from a terminal illness were examined using exploratory and confirmatory factor analysis. Ten factors were evidenced; they were easily interpretable in the AMT framework. In decreasing order of importance, people would, at the time of their death, like to have an understanding doctor, to be at peace with themselves, to remain autonomous, to keep a sense of humor, to remain able to oppose any decision taken without their consent, to remain an object of love, to remain a reference for others, to have resolved conflicts with others, to leave their businesses in good order, and to find themselves at peace with God.

  1. "Leges artis, end(ing) of life, and compassion".

    PubMed

    Rueff, Maria do Céu

    2013-12-01

    I will problematize medical performances at the end of life, confronting them with the responses of Portuguese Criminal Law. By starting from a review of literature, both in Portugal and abroad, I will cross the criminal doctrine with a broader, interdisciplinary approach, including the reconsideration of medicine ethical tradition (notably the Hippocratic Writings) and the present developments in neurosciences. The frame of homeostasis (neurobiology of emotions) by Damisio, with compassion in the top, helps to clarify to which extent medical act according to legesart is becomes the centre of the problem. Indeed, it is within the medical act, understood as the meeting of two autonomies--patient's and doctor's autonomies--that the compassion takes place as a result of the agreement/compromise between the patient's will of ceasing her/his life in a situation of unbearable suffering and the doctor's duty to relieve that suffering. Compassion arises here as a "homeostasis instrument", that is, an emotion which is important in the regulation of life, even when we are speaking about end(ing) of life. This new perspective allows us to guess a shift of paradigm on the ethical and social levels. On the other hand, in so far as we have passed from the compassionate response in medical setting to its discussion, successively, in medical ethics, in the courts, and as a normative instrument, I claim that we are before the "transition from an automatic homeostasis to a deliberate homeostasis" (Damisio). Therefore, 1 seek for a balance between the spontaneous and the planned, concerning the issue of praxis. Indeed, what increasingly happens in medical praxis should be brought together with theory, whereby medical law has a word to say.

  2. Accounting for missing data in end-of-life research.

    PubMed

    Diehr, Paula; Johnson, Laura Lee

    2005-01-01

    End-of-life studies are likely to have missing data because sicker persons are less likely to provide information and because measurements cannot be made after death. Ignoring missing data may result in data that are too favorable, because the sickest persons are effectively dropped from the analysis. In a comparison of two groups, the group with the most deaths and missing data will tend to have the most favorable data, which is not desirable. Results based on only the available data may not be generalizable to the original study population. If most of the missing data are absent because of death, methods that account for the deaths may remove much of the bias. Imputation methods can then be used for the data that are missing for other reasons. An example is presented from a randomized trial involving frail veterans. In that dataset, only two thirds of the subjects had complete data, but 60% of the "missing" data were missing because of death. The available data alone suggested that health improved significantly over time. However, after accounting for the deaths, there was a significant decline in health over time, as had been expected. Imputation of the remaining missing data did not change the results very much. With and without the imputed data, there was never a significant difference between the treatment and control groups, but in two nonrandomized comparisons the method of handling the missing data made a substantive difference. These sensitivity analyses suggest that the main results were not sensitive to the death and missing data, but that some secondary analyses were sensitive to these problems. Similar approaches should be considered in other end-of-life studies.

  3. Satellite end of life constraints: Technical and organisational solutions

    NASA Astrophysics Data System (ADS)

    Cabrières, Bernard; Alby, Fernand; Cazaux, Christian

    2012-04-01

    Since 1974 with the radiocommunication satellite Symphony1, CNES launched and operated 11 GEO and 20 LEO satellites. During those 36 years, both flight segment and ground segment dramatically evolved and operational organisations and techniques equally improved. At the present time, CNES operates 1 GEO satellite and 17 LEO satellites with not much more people and costs than in 1986 when its first Satellite Operation Direction in Toulouse was only in charge of Telecom1A, Telecom1B and Spot1. This fantastic technical evolution combined with the huge increase of services to citizens and governments given by Space systems was unfortunately also associated with an enormous growth of space pollution by debris of all sizes. From the beginning, CNES was a major actor of the international effort to promote regulations in order to try to reduce or at least control this problematic situation. Internally, CNES, not only set up an operational on-call service to deal with collision risks, but decided to do its best to apply the new guidelines to the end of life of satellites under its responsibility even for those developed and launched a very long time ago. For instance, that was the case in 2009 for the reorbitation of the GEO satellite Telecom 2C (launched in 1995) and for the deorbitation of the LEO satellite Spot2 (launched in 1990). In addition, CNES prepares procedures to be able to be as exemplary as possible for its other spacecrafts whose end of life approaches. The constraints and challenges to face in order to cope with these new requirements are multiple: choice of final orbit, realistic calculation of re-entry duration, estimation of residual propellant, electric passivation, management of explosion risks… All these studies and operational experience gained will be helpful for the new role of CNES, which recently became in charge of controlling space operators in the frame of the new French space law on space operations.

  4. End-of-life and brain death in acute coma and disorders of consciousness.

    PubMed

    Greer, David M; Curiale, Gioacchino G

    2013-04-01

    Consulting neurologists are often asked to evaluate patients in acute nontraumatic coma. The authors review prognostication of functional outcomes, determining brain death, and managing end-of-life care. Prognostication of outcome after cardiac arrest in comatose patients is a frequently encountered scenario with high-stakes implications. However, current guidelines are limited by a failure to address the use of therapeutic hypothermia and thus may lead to overly pessimistic outcome prediction. Pupillary light responses and corneal reflexes remain highly predictive clinical signs of a poor prognosis. Motor responses have a high false-positive rate for predicting a poor outcome, especially in patients treated with therapeutic hypothermia. Ancillary testing with electroencephalography, somatosensory evoked potentials, serum neuron-specific enolase, and neuroimaging is often useful in predicting outcomes. Brain death is a clinical condition of irreversible coma of known cause with absent brainstem reflexes and apnea. An understanding of the value of confirmatory testing and the potential for confounding factors is essential in making a correct diagnosis. As coma carries a high mortality rate, neurologists must be capable of guiding goals of care, discussing end-of-life issues, and understanding organ-procurement procedures.

  5. Predictive Modeling for End-of-Life Pain Outcome using Electronic Health Records

    PubMed Central

    Lodhi, Muhammad K.; Stifter, Janet; Yao, Yingwei; Ansari, Rashid; Kee-nan, Gail M.; Wilkie, Diana J.; Khokhar, Ashfaq A.

    2016-01-01

    Electronic health record (EHR) systems are being widely used in the healthcare industry nowadays, mostly for monitoring the progress of the patients. EHR data analysis has become a big data problem as data is growing rapidly. Using a nursing EHR system, we built predictive models for determining what factors influence pain in end-of-life (EOL) patients. Utilizing different modeling techniques, we developed coarse-grained and fine-grained models to predict patient pain outcomes. The coarse-grained models help predict the outcome at the end of each hospitalization, whereas fine-grained models help predict the outcome at the end of each shift, thus providing a trajectory of predicted outcomes over the entire hospitalization. These models can help in determining effective treatments for individuals and groups of patients and support standardization of care where appropriate. Using these models may also lower the cost and increase the quality of end-of-life care. Results from these techniques show significantly accurate predictions. PMID:27500287

  6. Retrospective and prospective data collection compared in the Dutch End Of Life in Dementia (DEOLD) study.

    PubMed

    van der Steen, Jenny T; Ribbe, Miel W; Deliens, Luc; Gutschow, Giselka; Onwuteaka-Philipsen, Bregje D

    2014-01-01

    Studying end of life in dementia patients is challenging because of ill-defined prognoses and frequent inability to self-report. We aim to quantify and compare (1) feasibility and (2) sampling issues between prospective and retrospective data collection specific to end-of-life research in long-term care settings. The observational Dutch End of Life in Dementia study (DEOLD; 2007 to 2011) used both prospective data collection (28 facilities; 17 nursing home organizations/physician teams; questionnaires between January 2007 and July 2010, survival until July 2011) and retrospective data collection (exclusively after death; 6 facilities; 2 teams, questionnaires between November 2007 and March 2010). Prospective collection extended from the time of admission to the time after death or conclusion of the study. Prospectively, we recruited 372 families: 218 residents died (59%) and 184 (49%) had complete physician and family after-death assessments. Retrospectively, 119 decedents were enrolled, with 64 (54%) complete assessments. Cumulative data collection over all homes lasted 80 and 8 years, respectively. Per complete after-death assessments in a year, the prospective data collection involved 37.9 beds, whereas this was 7.9 for the retrospective data collection. Although age at death, sex, and survival curves were similar, prospectively, decedents' length of stay was shorter (10.3 vs. 31.4 mo), and fewer residents had advanced dementia (39% vs. 54%). Regarding feasibility, we conclude that prospective data collection is many fold more intensive and complex per complete after-death assessment. Regarding sampling, if not all are followed until death, it results in right censoring and in different, nonrepresentative samples of decedents compared with retrospective data collection. Future work may adjust or stratify for dementia severity and length of stay as key issues to promote comparability between studies.

  7. Life cycle and nano-products: end-of-life assessment

    NASA Astrophysics Data System (ADS)

    Asmatulu, Eylem; Twomey, Janet; Overcash, Michael

    2012-03-01

    Understanding environmental impacts of nanomaterials necessitates analyzing the life cycle profile. The initial emphasis of nanomaterial life cycle studies has been on the environmental and health effects of nanoproducts during the production and usage stages. Analyzing the end-of-life (eol) stage of nanomaterials is also critical because significant impacts or benefits for the environment may arise at that particular stage. In this article, the Woodrow Wilson Center's Project on Emerging Nanotechnologies (PEN) Consumer Products Inventory (CPI) model was used, which contains a relatively large and complete nanoproduct list (1,014) as of 2010. The consumer products have wide range of applications, such as clothing, sports goods, personal care products, medicine, as well as contributing to faster cars and planes, more powerful computers and satellites, better micro and nanochips, and long-lasting batteries. In order to understand the eol cycle concept, we allocated 1,014 nanoproducts into the nine end-of-life categories (e.g., recyclability, ingestion, absorption by skin/public sewer, public sewer, burning/landfill, landfill, air release, air release/public sewer, and other) based on probable final destinations of the nanoproducts. This article highlights the results of this preliminary assessment of end-of-life stage of nanoproducts. The largest potential eol fate was found to be recyclability, however little literature appears to have evolved around nanoproduct recycling. At lower frequency is dermal and ingestion human uptake and then landfill. Release to water and air are much lower potential eol fates for current nanoproducts. In addition, an analysis of nano-product categories with the largest number of products listed indicated that clothes, followed by dermal-related products and then sports equipment were the most represented in the PEN CPI (http://www.nanotechproject.org/inventories/consumer/browse/categories/, 2010).

  8. Unravelling the Tensions Between Chronic Disease Management and End-of-Life Planning.

    PubMed

    Thorne, Sally; Roberts, Della; Sawatzky, Richard

    2016-01-01

    An increasing appreciation for the burden that chronic conditions represent for people and for societies has triggered an evolving body of popular and professional conceptualizations of the nature of the chronic disease challenge. In this discussion article, we trace the trajectory of thinking about chronic illness care, surfacing underlying assumptions and drivers that have shaped current dominant models of service delivery. We note significant gaps in these conceptualizations, especially with respect to the reality that many chronic conditions are life limiting. Contrasting chronic disease theorizing with the conversations that have arisen around end-of-life care for other kinds of health conditions, we argue for a shift in our thinking to accommodate the implications of life limitation in our service delivery planning. We see significant leadership potential in optimizing the role nurses can play across the chronic disease trajectory by integrating the healthy optimism of self-care management with the profound compassion of a person-centered palliative approach.

  9. Nursing home social worker skills and end-of-life planning.

    PubMed

    Lacey, Debra

    2005-01-01

    Little empirical information exists on nursing home social worker's involvement in advance care planning and end-of-life decision- making with nursing home residents and their family members. The purpose of this exploratory study was twofold: (1) to identify the frequency of skills associated with advance care planning that social workers use, and (2) to explore the factor structure of the scale used in the study. Results from 138 nursing home social worker respondents from New York State showed high frequency of advance directive discussions, care planning, and conflict resolution with families. The instrument factors clustered around administrative duties, and grief issues. There was substantial interest in continuing education in grief counseling with families.

  10. Social Work Practice with LGBT Elders at End of Life: Developing Practice Evaluation and Clinical Skills Through a Cultural Perspective.

    PubMed

    Arthur, Darren P

    2015-01-01

    This article focuses on culturally sensitive clinical issues related to best practices with lesbian, gay, bisexual, transgender (LGBT) elder patients at end-of-life (EOL) at key points in the therapeutic relationship. Vital concepts, including practice evaluation and clinical skills, are presented through a cultural and oncology lens. There is a paucity of LGBT research and literature as well as a shortfall of MSW graduate school education specific to social work palliative and end-of-life care (PELC) practice with LGBT elders. The content of this article is designed to be adapted and used as an educational tool for institutions, agencies, graduate programs, medical professions, social work, and students. Learning the unique elements of LGBT cultural history and their implications on EOL care can improve social work practice. This article provides an examination from assessment and engagement basics to advance care planning incorporating specific LGBT EOL issues.

  11. Advance Directive in End of Life Decision-Making among the Yoruba of South-Western Nigeria

    PubMed Central

    Jegede, Ayodele Samuel; Adegoke, Olufunke Olufunsho

    2017-01-01

    End-of-life decision making is value-laden within the context of culture and bioethics. Also, ethics committee role is difficult to understand on this, thus need for ethnomethodological perspective in an expanding bioethical age. Anthropological approach was utilized to document Yoruba definition and perspective of death, cultural beliefs about end-of-life decision making, factors influencing it and ethics committee role. Interviews were conducted among selected Yoruba resident in Akinyele LGA, Oyo State, Nigeria. Content analytical approach was used for data analysis. Yoruba culture, death is socially constructed having spiritual, physical and social significance. Relationship between the dying and significant others influences decision making. Hierarchy of authority informs implementing traditional advance directive. Socialization, gender, patriarchy, religious belief and tradition are major considerations in end-of-life decision making. Awareness, resource allocation and advocacy are important ethics committees’ roles. Further research into cultural diversity of end-of-life decision making will strengthen ethical practice in health care delivery. PMID:28344984

  12. "This is our last stop": Negotiating end-of-life transitions in assisted living.

    PubMed

    Ball, Mary M; Kemp, Candace L; Hollingsworth, Carole; Perkins, Molly M

    2014-08-01

    Where people die has important implications for end-of-life (EOL) care. Assisted living (AL) increasingly is becoming a site of EOL care and a place where people die. AL residents are moving in older and sicker and with more complex care needs, yet AL remains largely a non-medical care setting that subscribes to a social rather than medical model of care. The aims of this paper are to add to the limited knowledge of how EOL is perceived, experienced, and managed in AL and to learn how individual, facility, and community factors influence these perceptions and experiences. Using qualitative methods and a grounded theory approach to study eight diverse AL settings, we present a preliminary model for how EOL care transitions are negotiated in AL that depicts the range of multilevel intersecting factors that shape EOL processes and events in AL. Facilities developed what we refer to as an EOL presence, which varied across and within settings depending on multiple influences, including, notably, the dying trajectories and care arrangements of residents at EOL, the prevalence of death and dying in a facility, and the attitudes and responses of individuals and facilities toward EOL processes and events, including how deaths were communicated and formally acknowledged and the impact of death and dying on the residents and staff. Our findings indicate that in the majority of cases, EOL care must be supported by collaborative arrangements of care partners and that hospice care is a critical component.

  13. Information and Communication Needs of Parents in Infant End-of-Life: A Qualitative Study

    PubMed Central

    Sadeghi, Narges; Hasanpour, Marzieh; Heidarzadeh, Mohamad

    2016-01-01

    Background Hospitalization of a neonate in the neonatal intensive care unit (NICU) can be a stressful event for parents. They need specific information and communication to alleviate their stress, but these parental needs are not met by NICU staff. Exploration of these needs can help health professionals to provide better healthcare services. Objectives The purpose of this study was to explore the information and communication needs of families in neonatal end-of-life and bereavement in the NICU. Materials and Methods A qualitative content analysis method was used for this study. Data were collected through single semi-structured interviews with 24 participants. Sampling was conducted based on the purposive sampling method in five NICU environments in Iran. All interviews were taped and transcribed verbatim. Results Data analysis revealed two main themes: information and communication. For information, there were two subthemes (true information about the infant’s health and true information about the infant’s death), and communication needs also developed two subthemes (communication with healthcare professionals and communication with the infant before, during and after the infant’s death). Conclusions According to the results, parents need accurate information about the health and the death of their neonates in the NICU. They also need to communicate with healthcare professionals and their babies. Communication is regarded as a channel for obtaining information. Therefore, the healthcare team needs to address these families’ needs and attempt to fulfill their requirements in neonatal end-of-life and bereavement in the NICU. PMID:27621926

  14. Hyperspectral imaging applied to end-of-life concrete recycling

    NASA Astrophysics Data System (ADS)

    Serranti, Silvia; Bonifazi, Giuseppe

    2014-03-01

    In this paper a new technology, based on HyperSpectral Imaging (HSI) sensors, and related detection architectures, is investigated in order to develop suitable and low cost strategies addressed to: i) preliminary detection and characterization of the composition of the structure to dismantle and ii) definition and implementation of innovative smart detection engines for sorting and/or demolition waste flow stream quality control. The proposed sensing architecture is fast, accurate, affordable and it can strongly contribute to bring down the economic threshold above which recycling is cost efficient. Investigations have been carried out utilizing an HSI device working in the range 1000-1700 nm: NIR Spectral Camera™, embedding an ImSpector™ N17E (SPECIM Ltd, Finland). Spectral data analysis was carried out utilizing the PLS_Toolbox (Version 6.5.1, Eigenvector Research, Inc.) running inside Matlab® (Version 7.11.1, The Mathworks, Inc.), applying different chemometric techniques, selected depending on the materials under investigation. The developed procedure allows assessing the characteristics, in terms of materials identification, such as recycled aggregates and related contaminants, as resulting from end-of-life concrete processing. A good classification of the different classes of material was obtained, being the model able to distinguish aggregates from other materials (i.e. glass, plastic, tiles, paper, cardboard, wood, brick, gypsum, etc.).

  15. End-of-Life Management: Solar Photovoltaic Panels

    SciTech Connect

    Weckend, Stephanie; Wade, Andreas; Heath, Garvin

    2016-06-01

    Solar photovoltaic (PV) deployment has grown at unprecedented rates since the early 2000s. As the global PV market increases, so will the volume of decommissioned PV panels, and large amounts of annual waste are anticipated by the early 2030s. Growing PV panel waste presents a new environmental challenge, but also unprecedented opportunities to create value and pursue new economic avenues. This report, prepared jointly by the International Renewable Energy Agency (IRENA) and the International Energy Agency Photovoltaic Power Systems Programme (IEA-PVPS), is the first-ever projection of PV panel waste volumes to 2050. It highlights that recycling or repurposing solar PV panels at the end of their roughly 30-year lifetime can unlock an estimated stock of 78 million tonnes of raw materials and other valuable components globally by 2050. If fully injected back into the economy, the value of the recovered material could exceed USD 15 billion by 2050. Sectors like PV recycling will be essential in the world's transition to a sustainable, economically viable and increasingly renewables-based energy future. To unlock the benefits of such PV end-of-life industries, the institutional groundwork must be laid in time to meet the expected surge in panel waste. Policy action is needed to address the challenges ahead, with enabling frameworks being adapted to the needs and circumstances of each region or country.

  16. Review of End-of-Life Thermal Control Coating Performance

    NASA Technical Reports Server (NTRS)

    Jaworske, Donald A.; Kline, Sara E.

    2008-01-01

    White thermal control coatings capable of long term performance are needed for Fission Surface Power (FSP) where heat from a nuclear reactor placed on the surface of the Moon must be rejected to the environment. The threats to thermal control coating durability on the lunar surface are electrons, protons, and ultraviolet radiation. The anticipated damage to the coating is a gradual darkening over time. The increase in solar absorptance would, in essence, add a cyclic heat load to the radiator. The greater the darkening, the greater the added heat load. The cyclic heat load could ultimately impart a cyclic influence on FSP system performance. No significant change in emittance is anticipated. Optical properties degradation data were found in the open literature for the Z-93 series of thermal control paints. Additional optical properties degradation data were found from the Lunar Orbiter V mission, the Optical Properties Monitor, and the Materials International Space Station Experiment. Anticipated end-of-life thermal control coating performance for a FSP installation is postulated. With the FSP installation located away from landing and launching areas, and out of line-of-sight, lunar dust from human activity may not be a threat. The benefits of investing in next generation thermal control paint chemistry are explored.

  17. Ethics and the cardiac pacemaker: more than just end-of-life issues.

    PubMed

    Hutchison, Katrina; Sparrow, Robert

    2017-04-06

    For many years, ethical debate about pacemakers has focused on whether and under what circumstances they may be turned off in end of life care. Several other important ethical issues have been neglected, perhaps because the dilemmas they pose for cardiologists are not so immediate. These include: potential conflicts of interest, particularly those arising from the role of industry employed allied professionals (IEAPs) in pacemaker care; unanticipated impacts of commercial competition and the device improvement cycle; risks associated with remotely accessible software; equity in access to healthcare; and questions about reuse of explanted pacemakers in low and middle income countries. This paper analyses these issues in order to facilitate a more comprehensive approach to ethics and the cardiac pacemaker. Cardiologists should be aware of all of these issues and contribute to ongoing discussions about how they are resolved.

  18. Ethos, mythos, and thanatos: spirituality and ethics at the end of life.

    PubMed

    Sulmasy, Daniel P

    2013-09-01

    Every ethos implies a mythos in the sense that every systematic approach to ethics is inevitably based on some fundamental religious or religion-like story that gives answers to questions such as: Where did I come from? Where am I going? How am I to live? These narratives generally lay hidden beneath the plane of the interpersonal interactions that characterize all clinical encounters, but caring for patients who are approaching death brings them closer to the surface. For many patients and practitioners, these narratives will be expressed in explicitly religious language; others may invoke a sense of "immanent transcendence" that affords a spiritual perspective without requiring theism or notions of eternity. In caring for patients at the end of life, practitioners should strive to be more conscious of the narratives that undergird their own spiritual and ethical positions as well as seek to understand those of the patients they serve.

  19. [Medicine and Law: abdication of therapy by practitioners at the end of life].

    PubMed

    Rogler, Gerhard; Mausbach, Julian

    2013-12-31

    The question, how and when an individual decision for and end of medical treatment or abdication of therapy should be made remains difficult. Ethical considerations have to be taken into account with respect to a humane and dignified decease. The goal of our manuscript there for is to achieve more certainty with respect to juridical and legal preconditions and frameworks. The conditions in Switzerland support general practitioners and family doctors to fulfill patients' requests, wishes and wills in an outpatient setting. An awareness and sensitization for a dignified and humane care at the end of life - despite social changes and an increased importance of health economics - as well increasing support of outpatient palliative care become more and more important. Existing legal certainty and security of practitioners, therefore, will be outlined in the following.

  20. Communicating with Patients and their Families about Palliative and End of Life: Comfort and Educational Needs of Staff RNs

    PubMed Central

    Moir, Cheryl; Roberts, Renee; Martz, Kim; Perry, Judith; Tivis, Laura J.

    2016-01-01

    Introduction Effectively discussing palliative care with patients and families requires knowledge and skill. The purpose of this study was to determine perceived needs of inpatient nurses for communicating with patients and families about palliative and end of life care. Method A non-experimental design was utilized. Sixty inpatient nurses completed the End of Life Professional Caregiver survey. Results Effects for years of experience and unit were found [F(9,131.57)=2.22, p=0.0246; Wilk's Λ=0.709 and F(6,110)=2.49, p=0.0269]. For all three domains (Patient and Family-Centered Communication, Cultural and Ethical Values, and Effective Care Delivery) years of nursing experience was positively associated with comfort in communicating about end of life care. Oncology nurses reported were most comfortable with regard to patient and family-centered communication. Discussion The success and sustainability of this service is dependent on education for healthcare providers. Studies are needed to determine best ways to meet this educational challenge. PMID:25815758

  1. [End-of-life decisions and reluctant treatment of newborns on the borderline of viability in the Netherlands].

    PubMed

    Kollée, L A A

    2005-09-10

    End-of-life decisions are taken in the majority of deaths below one year of age, especially in neonatal intensive-care units. In the Netherlands, the frequency of such decisions has not increased in recent years. Intentional termination of life occurred in 1% of the deaths, which would be about 10 cases each year. However, only 3 such cases are reported to the public prosecutor for review by the responsible physician. Proposals from the government to facilitate reporting of such cases are awaited. Dutch neonatologists are reluctant to administer full neonatal intensive care to extremely preterm infants. Currently, the policy regarding antenatal referral and treatment of extremely preterm infants is being re-evaluated by obstetricians and neonatologists. Behind the stable frequency of end-of-life decisions, difficult ethical issues remain to be solved.

  2. End-of-life flows of multiple cycle consumer products

    SciTech Connect

    Tsiliyannis, C.A.

    2011-11-15

    Explicit expressions for the end-of-life flows (EOL) of single and multiple cycle products (MCPs) are presented, including deterministic and stochastic EOL exit. The expressions are given in terms of the physical parameters (maximum lifetime, T, annual cycling frequency, f, number of cycles, N, and early discard or usage loss). EOL flows are also obtained for hi-tech products, which are rapidly renewed and thus may not attain steady state (e.g. electronic products, passenger cars). A ten-step recursive procedure for obtaining the dynamic EOL flow evolution is proposed. Applications of the EOL expressions and the ten-step procedure are given for electric household appliances, industrial machinery, tyres, vehicles and buildings, both for deterministic and stochastic EOL exit, (normal, Weibull and uniform exit distributions). The effect of the physical parameters and the stochastic characteristics on the EOL flow is investigated in the examples: it is shown that the EOL flow profile is determined primarily by the early discard dynamics; it also depends strongly on longevity and cycling frequency: higher lifetime or early discard/loss imply lower dynamic and steady state EOL flows. The stochastic exit shapes the overall EOL dynamic profile: Under symmetric EOL exit distribution, as the variance of the distribution increases (uniform to normal to deterministic) the initial EOL flow rise becomes steeper but the steady state or maximum EOL flow level is lower. The steepest EOL flow profile, featuring the highest steady state or maximum level, as well, corresponds to skew, earlier shifted EOL exit (e.g. Weibull). Since the EOL flow of returned products consists the sink of the reuse/remanufacturing cycle (sink to recycle) the results may be used in closed loop product lifecycle management operations for scheduling and sizing reverse manufacturing and for planning recycle logistics. Decoupling and quantification of both the full age EOL and of the early discard flows is

  3. End-of-life flows of multiple cycle consumer products.

    PubMed

    Tsiliyannis, C A

    2011-11-01

    Explicit expressions for the end-of-life flows (EOL) of single and multiple cycle products (MCPs) are presented, including deterministic and stochastic EOL exit. The expressions are given in terms of the physical parameters (maximum lifetime, T, annual cycling frequency, f, number of cycles, N, and early discard or usage loss). EOL flows are also obtained for hi-tech products, which are rapidly renewed and thus may not attain steady state (e.g., electronic products, passenger cars). A ten-step recursive procedure for obtaining the dynamic EOL flow evolution is proposed. Applications of the EOL expressions and the ten-step procedure are given for electric household appliances, industrial machinery, tyres, vehicles and buildings, both for deterministic and stochastic EOL exit, (normal, Weibull and uniform exit distributions). The effect of the physical parameters and the stochastic characteristics on the EOL flow is investigated in the examples: it is shown that the EOL flow profile is determined primarily by the early discard dynamics; it also depends strongly on longevity and cycling frequency: higher lifetime or early discard/loss imply lower dynamic and steady state EOL flows. The stochastic exit shapes the overall EOL dynamic profile: Under symmetric EOL exit distribution, as the variance of the distribution increases (uniform to normal to deterministic) the initial EOL flow rise becomes steeper but the steady state or maximum EOL flow level is lower. The steepest EOL flow profile, featuring the highest steady state or maximum level, as well, corresponds to skew, earlier shifted EOL exit (e.g., Weibull). Since the EOL flow of returned products consists the sink of the reuse/remanufacturing cycle (sink to recycle) the results may be used in closed loop product lifecycle management operations for scheduling and sizing reverse manufacturing and for planning recycle logistics. Decoupling and quantification of both the full age EOL and of the early discard flows is

  4. Study examines quality of life factors at end of life for patients with cancer | Division of Cancer Prevention

    Cancer.gov

    Better quality of life at the end of life for patients with advanced cancer was associated with avoiding hospitalizations and the intensive care unit, worrying less, praying or meditating, being visited by a pastor in a hospital or clinic, and having a therapeutic alliance with their physician, according to a Dana-Farber Cancer Institute report published Online First by Archives of Internal Medicine, a JAMA Network publication. |

  5. 30 CFR 203.50 - Who may apply for end-of-life royalty relief?

    Code of Federal Regulations, 2012 CFR

    2012-07-01

    ... 30 Mineral Resources 2 2012-07-01 2012-07-01 false Who may apply for end-of-life royalty relief... General § 203.50 Who may apply for end-of-life royalty relief? You may apply for royalty relief in two situations. (a) Your end-of-life lease (as defined in § 203.2) is an oil and gas lease and has average...

  6. 30 CFR 203.50 - Who may apply for end-of-life royalty relief?

    Code of Federal Regulations, 2013 CFR

    2013-07-01

    ... 30 Mineral Resources 2 2013-07-01 2013-07-01 false Who may apply for end-of-life royalty relief... General § 203.50 Who may apply for end-of-life royalty relief? You may apply for royalty relief in two situations. (a) Your end-of-life lease (as defined in § 203.2) is an oil and gas lease and has average...

  7. 30 CFR 203.50 - Who may apply for end-of-life royalty relief?

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... 30 Mineral Resources 2 2014-07-01 2014-07-01 false Who may apply for end-of-life royalty relief... General § 203.50 Who may apply for end-of-life royalty relief? You may apply for royalty relief in two situations. (a) Your end-of-life lease (as defined in § 203.2) is an oil and gas lease and has average...

  8. How respect and kindness are experienced at the end of life by nursing home residents.

    PubMed

    Thompson, Genevieve N; McClement, Susan E; Chochinov, Harvey M

    2011-09-01

    Respect and kindness are core principles of nursing practice, yet little is known about how they are experienced by nursing home (NH) residents at the end of life. The aim of this study was to examine the factors associated with being treated with respect and kindness in the last month of life as an NH resident. A retrospective survey of 208 bereaved family members was conducted in 21 NHs located in a city in central Canada. The majority of participants indicated that the resident had always been treated with respect or kindness. However, significant differences emerged, with not all family members believing that their loved one had always been treated with respect or kindness. The apparent lapses in care practices are troubling and indicate that steps must be taken to address them.

  9. End-of-life issues: common law and the Mental Capacity Act 2005.

    PubMed

    Fullbrook, Suzanne

    The preceding articles in this group of the series have thus far identified the common law principles in the sections of the Mental Capacity Act 2005 in respect of certain groups of people--those who retain their capacity to organize their own health-related affairs, those who have lost their capacity to self-determine their health choices on a temporary basis, and those who are no longer competent but who had previously identified their choices in respect of treatments and care. One common theme attaches to these groups--they all fall within the common law principles that underpin the health-related needs of those whose lives are supposed to continue after the decisions have been identified. This article, the last in this group, addresses specifically the legal principles, the ethical and moral dimensions, and the practical aspects of decisions where the consequence will be death--the so called 'end-of-life issues'.

  10. Three lessons from a randomized trial of massage and meditation at end of life: patient benefit, outcome measure selection, and design of trials with terminally ill patients.

    PubMed

    Downey, Lois; Engelberg, Ruth A; Standish, Leanna J; Kozak, Leila; Lafferty, William E

    2009-01-01

    Improving end-of-life care is a priority in the United States, but assigning priorities for standard care services requires evaluations using appropriate study design and appropriate outcome indicators. A recent randomized controlled trial with terminally ill patients produced no evidence of benefit from massage or guided meditation, when evaluated with measures of global quality of life or pain distress over the course of patient participation. However, reanalysis using a more targeted outcome, surrogates' assessment of patients' benefit from the study intervention, suggested significant gains from massage-the treatment patients gave their highest preassignment preference ratings. The authors conclude that adding a menu of complementary therapies as part of standard end-of-life care may yield significant benefit, that patient preference is an important predictor of outcome, and that modifications in trial design may be appropriate for end-of-life studies.

  11. Dignity and Distress towards the End of Life across Four Non-Cancer Populations

    PubMed Central

    Chochinov, Harvey Max

    2016-01-01

    Objective The purpose of this study was to identify four non-cancer populations that might benefit from a palliative approach; and describe and compare the prevalence and patterns of dignity related distress across these diverse clinical populations. Design A prospective, multi-site approach was used. Setting Outpatient clinics, inpatient facilities or personal care homes, located in Winnipeg, Manitoba and Edmonton, Alberta, Canada. Participants Patients with advanced Amyotrophic Lateral Sclerosis (ALS), Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Disease (ESRD); and the institutionalized alert frail elderly. Main Outcome Measure In addition to standardized measures of physical, psychological and spiritual aspects of patient experience, the Patient Dignity Inventory (PDI). Results Between February 2009 and December 2012, 404 participants were recruited (ALS, 101; COPD, 100; ESRD, 101; and frail elderly, 102). Depending on group designation, 35% to 58% died within one year of taking part in the study. While moderate to severe loss of sense of dignity did not differ significantly across the four study populations (4–11%), the number of PDI items reported as problematic was significantly different i.e. ALS 6.2 (5.2), COPD 5.6 (5.9), frail elderly 3.0 (4.4) and ESRD 2.3 (3.9) [p < .0001]. Each of the study populations also revealed unique and distinct patterns of physical, psychological and existential distress. Conclusion People with ALS, COPD, ESRD and the frail elderly face unique challenges as they move towards the end of life. Knowing the intricacies of distress and how they differ across these groups broadens our understanding of end-of-life experience within non-cancer populations and how best to meet their palliative care needs. PMID:26808530

  12. Incorporating café design principles into End-of-Life discussions: an innovative method for continuing education.

    PubMed

    Kanaskie, Mary Louise

    2011-04-01

    Café design provides an innovative method for conducting continuing education activities. This method was chosen to elicit meaningful conversation based on issues related to End-of-Life care. Café design principles incorporate the following: setting the context, creating hospitable space, exploring questions that matter, encouraging everyone's contributions, connecting diverse perspectives, listening together for insights, and sharing collective discoveries. Key discussion questions were identified from the End-of Life Nursing Education Consortium Core Curriculum. Questions were revised to incorporate the principles of appreciative inquiry, which encourage a shift from traditional methods of problem identification to creation of a positive vision. Participants rated the café design method as an effective way to share their ideas and to stimulate conversation.

  13. The role of 'accompagnement' in the end-of-life debate in France: from solidarity to autonomy.

    PubMed

    Gaille, Marie; Horn, Ruth

    2016-12-01

    This article traces the way autonomy has become a recognised value in health care in France. In a country that based its social fundamentals on the very idea of solidarity for many years, autonomy has long been considered a foreign 'Anglo-American principle'. Taking the example of the end-of-life debate, the article shows, however, how the use of the French term 'accompagnement' allowed autonomy to be redefined and to be associated with the concept of solidarity. Exploring the arguments used over the past 25 years in professional guidelines, parliamentary reports, ethics committee reports, and legal texts, the authors describe the shift that took place in public and legal discourses on end-of-life care. The analysis demonstrates how the scope of autonomy has been limited by other social values, such as the protection of the dying person, in order to become an accepted social value in its own right. The example of the French end-of-life debate shows that depending on how the concept of autonomy is adapted and applied in a specific context, it can be compatible with the idea of solidarity. Such compatibility has been challenged previously in the international bioethics debate. By demonstrating the possibility of combining autonomy and solidarity, this article makes an important contribution to the international bioethics debate and to the dialogue between countries that are often perceived as significantly different.

  14. The Burden of Polypharmacy in Patients Near the End of Life

    PubMed Central

    McNeil, Michael J.; Kamal, Arif H.; Kutner, Jean S.; Ritchie, Christine S.; Abernethy, Amy P.

    2015-01-01

    Context Patients with advanced illness are prescribed multiple medications in the last year of life, intensifying the risk of negative consequences related to polypharmacy. Objectives To describe the medication burden of patients near the end of life and identify potential areas for improvement in clinician prescribing practices. Methods This was a pre-specified secondary analysis of data from a prospective trial. Eligible participants were adults with less than 12 months estimated prognosis taking a statin medication for primary prevention of cardiovascular disease. Participants were enrolled from 15 sites, randomized to continue or discontinue statin medications, and followed for up to a year. Concomitant medications were recorded at least monthly from study enrollment through death. Prescribed medications were categorized by class and subclass. Descriptive statistics were calculated. Results On average, participants (N=244) were 74.3 years old (SD 11.5) and lived 264 days (SD 128); 47.5% of the patients had a primary diagnosis of malignant tumor. This population was exposed to medications across 51 classes, 192 subclasses and 423 individual medications. Patients took an average of 11.5 (SD 5) medications at the time of enrollment and 10.7 (SD 5) medications at death or study termination. The five most common classes of medications prescribed near the end of life were, anti-hypertensives, broncholytics/bronchodilators, laxatives, antidepressants, and gastric protection agents. Conclusion There is a significant medication burden placed on patients with advanced illness. Although most medications were prescribed for supportive care, we observed a high prevalence of medications for managing non-life threatening comorbidities. PMID:26432571

  15. Historical and Contemporary Issues in End-of-Life Decisions: Implications for Social Work

    ERIC Educational Resources Information Center

    Mackelprang, Romel W.; Mackelprang, Romel D.

    2005-01-01

    End-of-life circumstances have changed dramatically in recent years. In the past century life expectancy has increased by 62 percent and people are living longer with chronic illness. This article discusses evolving health practices and policies in end-of-life decisions. Treatments to prolong life and provide comfort, and interventions that hasten…

  16. An Analysis of End-of-Life Content in Aging Network Conference Proceedings

    ERIC Educational Resources Information Center

    Moone, Rajean P.; Cagle, John G.

    2009-01-01

    Important home and community-based issues in the lives of older adults and caregivers relate to end of life. It is well documented that education on end of life, including curricula and textbook content for health and human service professionals, is lacking. This study analyzed another aspect of education: continuing education sessions offered at…

  17. Aging Prisoners' Treatment Selection: Does Prospect Theory Enhance Understanding of End-of-Life Medical Decisions?

    ERIC Educational Resources Information Center

    Phillips, Laura L.; Allen, Rebecca S.; Harris, Grant M.; Presnell, Andrew H.; DeCoster, Jamie; Cavanaugh, Ronald

    2011-01-01

    Purpose: With the rapid growth in the older inmate population and the economic impact of end-of-life treatments within the cash-strapped prison system, consideration should be given to inmate treatment preferences. We examined end-of-life treatment preferences and days of desired life for several health scenarios among male inmates incarcerated…

  18. 30 CFR 203.50 - Who may apply for end-of-life royalty relief?

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... MINERALS REVENUE MANAGEMENT RELIEF OR REDUCTION IN ROYALTY RATES OCS Oil, Gas, and Sulfur General Royalty... royalty relief in two situations. (a) Your end-of-life lease (as defined in § 203.2) is an oil and gas...) Your end-of-life lease is other than an oil and gas lease (e.g., sulphur) and has production in...

  19. End of life customs among immigrants from Eritrea.

    PubMed

    Holt, L L

    2001-04-01

    Eritrean immigrants bring expectations and resources to meet the challenge of illness and death. This study, undertaken in cooperation with the Cross Cultural Health Care Program of Seattle, sought to learn about both the expectations and the resources. A literature search demonstrated that although Eritreans have much in common with Ethiopians, they must be seen as a separate people. Open-ended interviews were conducted with 2 Eritrean immigrants. Resulting tape transcriptions were studied to identify themes and values. Values included the importance of respect, the centrality of faith and of family, the use of herbs and home remedies, and the importance of visiting. Implications for health care within institutional and community settings were derived from these values with the help of Madeleine Leininger's culture care theory.

  20. Medicare Pays for End-of-Life Consults.

    PubMed

    Sorrel, Amy Lynn

    2016-06-01

    As of January, Medicare pays physicians for advance care planning as a separate service, a long-sought victory that promotes educating patients and physicians on the issue. The Centers for Medicare & Medicaid Services created two new payment codes that cover it as a separate service in physician practices and facilities, including hospitals.