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Sample records for aggressive end-of-life care

  1. Determinants for Aggressive End-of-Life Care for Oral Cancer Patients

    PubMed Central

    Chang, Ting-Shou; Su, Yu-Chieh; Lee, Ching-Chih

    2015-01-01

    Abstract Few studies have addressed the association between oral cancer and end-of-life (EOL) aggressive care using population data. We investigated the relationship between patient demographics, primary physician's specialty, and hospital characteristics of patients who died from oral cancer in Taiwan from 2009 to 2011 and the aggressiveness of their EOL care. This nationwide population-based, retrospective cohort study identified 5386 patients who died from oral cancer identified from Taiwan's National Register of Deaths Database and collected their claims data from Taiwan's National Health Insurance Research Database. Accepted indicators of aggressiveness of EOL care were examined using a composite measure adapted from Earle et al. Scores ranged from 0 to 6; the higher the score, the more aggressive the EOL care. The impact of each variable on the aggressiveness of EOL care was examined by multivariate analysis using a random-intercept model. The mean composite score for aggressiveness of EOL care was 2.68 ± 1.37. Oral cancer patients who were younger, had a higher level of comorbidity or metastasis, belonged to a lower-level individual socioeconomic status, were cared for by nononcologists, had longer postdiagnosis survival times, or resided in urban areas were more likely to receive aggressive care at EOL. Compared with previous studies, oral cancer patients near death in this nationwide study had a far higher utilization rate (>50%) of chemotherapy, emergency room services, and intensive care unit services. Our findings indicate that oral cancer patients receive extensive aggressive medical care at EOL. Future research may be needed to examine the effect of the means (indicators) of aggressive treatment on survival, quality of life, and medical costs, especially since current research suggests such care may adversely affect quality of life and important preparation of death in these patients. PMID:25634186

  2. End of life care.

    PubMed

    Gallacher, Rose

    2015-03-11

    End of life care is challenging, rewarding and a privileged experience, irrespective of where death occurs - in a hospital, care home, hospice, prison or at home. The CPD article was a reminder that death is a deeply personal and social experience, and one where individuals must be afforded dignity and respect. People who are dying should be referred to as individuals or persons, and not as patients. PMID:25758520

  3. Family Perspectives on Aggressive Cancer Care Near the End of Life

    PubMed Central

    Wright, Alexi A.; Keating, Nancy L.; Ayanian, John Z.; Chrischilles, Elizabeth A.; Kahn, Katherine L.; Ritchie, Christine S.; Weeks, Jane C.; Earle, Craig C.; Landrum, Mary Beth

    2016-01-01

    hospice services were less likely to report patients died in their preferred place [40.0% (152/380) vs. 72.8% (287/394); adjusted difference=-34.4 percentage points; 95% CI=-41.7 to -27.0). Conclusions/Relevance Among family members of elderly patients who died with lung or colorectal cancer, perceptions of better end-of-life care were associated with earlier hospice enrollment, avoidance of ICU admissions ≤30 days of death, and death outside the hospital. These findings are supportive of advance care planning consistent with patients’ preferences. PMID:26784776

  4. Advance directives and nursing home stays associated with less aggressive end-of-life care for patients with severe dementia.

    PubMed

    Nicholas, Lauren H; Bynum, Julie P W; Iwashyna, Theodore J; Weir, David R; Langa, Kenneth M

    2014-04-01

    The number of older adults with cognitive impairment is increasing, and such adults often require a surrogate to make decisions about health care. However, little is known about the aggressiveness of end-of-life care for these people, especially those who reside in the community. We found that cognitive impairment is common among older adults approaching the end of life, whether they live in the community or in a nursing home, and that nearly 30 percent of patients with severe dementia remained in the community until death. Among those patients, having an advance directive in the form of a living will was associated with significantly less aggressive care at the end of life, compared to similar patients without an advance directive-as measured by Medicare spending ($11,461 less per patient), likelihood of in-hospital death (17.9 percentage points lower), and use of the intensive care unit (9.4 percentage points lower). In contrast, advance directives were not associated with differences in care for people with normal cognition or mild dementia, whether they resided in the community or in a nursing home. Timely advance care planning after a diagnosis of cognitive impairment may be particularly important for older adults who reside in the community. PMID:24711329

  5. Latent class analysis identifies three subtypes of aggressive end-of-life care: a population-based study in Taiwan.

    PubMed

    Chen, Mei-Ling; Chen, Yun-Yi; Tang, Siew Tzuh

    2013-10-01

    The aggressiveness of end-of-life (EOL) cancer care has often been analysed by the occurrence of several indicators, separately or aggregately. Whether aggressive EOL cancer care has different subtypes is unknown. This study sought to identify distinct subtypes of aggressive EOL care based on usage patterns of aggressive EOL-care indicators and to explore demographic, disease and treatment factors associated with the identified subtypes. This retrospective study linked data from 2001 to 2006 from three Taiwanese databases: National Registration of Death Database, Cancer Registration System and National Health Insurance claims database. Adult cancer patients (N=203,642) who died in 2001-2006 were selected. For these cancer patients' last month of life, we analysed eight indicators of aggressive EOL care: receiving chemotherapy, >1 emergency room visit, >1 hospitalisation, hospitalisation for >14 days, intensive care unit admission, received cardiopulmonary resuscitation, received intubation and received mechanical ventilation. Subtypes of aggressive EOL care were identified by latent class analysis. Among the study population, only 22.3% were treated by medical oncologists. Based on their profiles of EOL care, deceased cancer patients were classified into three subgroups: 'not aggressive' (45%), 'intent to sustain life' (33%) and 'symptom crisis' group (22%). Patients assigned to the 'intent to sustain life' group were less likely to have metastatic disease and to receive hospice care in the last year of life, but more likely to be cared for by non-medical oncologists, to die within 2 months after diagnosis and to die in hospital. EOL cancer care may be improved by understanding factors related to different subtypes of aggressive EOL care. PMID:23756054

  6. Symptom control in end-of-life care: pain, eating, acute illnesses, panic attacks, and aggressive care.

    PubMed

    Lamers, William M

    2005-01-01

    This feature is based on actual questions and answers adapted from a service provided by the Hospice Foundation of America. Queries addressing the propriety of managing acute medical conditions in patients enrolled in a terminal care program and the mistaken belief that death from cancer is always painful are provided. Questions included in this set address management of acute medical conditions during end-of-life care, the lack of inevitability of pain with cancer, nutrition in advanced disease, managing panic attacks, and appropriate care for a dying 90 year old gentleman. PMID:16431836

  7. Enhance End-of-Life Care

    MedlinePlus

    ... Home Current Issue Past Issues Enhance End-of-Life Care Past Issues / Spring 2008 Table of Contents ... lead in the efforts to improve end-of-life care for patients and their families. Photo: Corbis ...

  8. End-of-Life Care

    MedlinePlus

    ... Discovery Into Health® Sources of Help Geriatric care managers, grief counselors, and palliative care and hospice staff ... help their families through this time. Geriatric care managers can make home visits and suggest needed services. ...

  9. Determinants for aggressive end-of-life care for oral cancer patients: a population-based study in an Asian country.

    PubMed

    Chang, Ting-Shou; Su, Yu-Chieh; Lee, Ching-Chih

    2015-01-01

    Few studies have addressed the association between oral cancer and end-of-life (EOL) aggressive care using population data. We investigated the relationship between patient demographics, primary physician's specialty, and hospital characteristics of patients who died from oral cancer in Taiwan from 2009 to 2011 and the aggressiveness of their EOL care. This nationwide population-based, retrospective cohort study identified 5386 patients who died from oral cancer identified from Taiwan's National Register of Deaths Database and collected their claims data from Taiwan's National Health Insurance Research Database. Accepted indicators of aggressiveness of EOL care were examined using a composite measure adapted from Earle et al. Scores ranged from 0 to 6; the higher the score, the more aggressive the EOL care. The impact of each variable on the aggressiveness of EOL care was examined by multivariate analysis using a random-intercept model. The mean composite score for aggressiveness of EOL care was 2.68 ± 1.37. Oral cancer patients who were younger, had a higher level of comorbidity or metastasis, belonged to a lower-level individual socioeconomic status, were cared for by nononcologists, had longer postdiagnosis survival times, or resided in urban areas were more likely to receive aggressive care at EOL. Compared with previous studies, oral cancer patients near death in this nationwide study had a far higher utilization rate (>50%) of chemotherapy, emergency room services, and intensive care unit services. Our findings indicate that oral cancer patients receive extensive aggressive medical care at EOL. Future research may be needed to examine the effect of the means (indicators) of aggressive treatment on survival, quality of life, and medical costs, especially since current research suggests such care may adversely affect quality of life and important preparation of death in these patients. PMID:25634186

  10. Networking to improve end of life care

    PubMed Central

    2009-01-01

    Network organisations are increasingly common in healthcare. This paper describes an example of clinically led networking, which improved end of life care (EOLC) in care homes, differentiating between a ‘network’ as a formal entity and the more informal process of ‘networking’. The paper begins with a brief discussion of networks and their development in healthcare, then an overview of EOLC policy, the case setting and methods. The paper describes four key features of this networking; (1) how it enabled discussions and implemented processes to help people address difficult taboos about dying; (2) how personal communication and ‘distributed leadership’ facilitated learning; (3) how EOLC occasionally lapsed during the handover of patient care, where personal relationship and communication were weaker; and (4) how successful learning and sharing of best practice was fragile and could be potentially undermined by wider financial pressures in the NHS. PMID:25949588

  11. Networking to improve end of life care.

    PubMed

    McGivern, Gerry

    2009-01-01

    Network organisations are increasingly common in healthcare. This paper describes an example of clinically led networking, which improved end of life care (EOLC) in care homes, differentiating between a 'network' as a formal entity and the more informal process of 'networking'. The paper begins with a brief discussion of networks and their development in healthcare, then an overview of EOLC policy, the case setting and methods. The paper describes four key features of this networking; (1) how it enabled discussions and implemented processes to help people address difficult taboos about dying; (2) how personal communication and 'distributed leadership' facilitated learning; (3) how EOLC occasionally lapsed during the handover of patient care, where personal relationship and communication were weaker; and (4) how successful learning and sharing of best practice was fragile and could be potentially undermined by wider financial pressures in the NHS. PMID:25949588

  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. End-of-life care: Indian perspective.

    PubMed

    Sharma, Himanshu; Jagdish, Vankar; Anusha, Prabhakaran; Bharti, Sharma

    2013-01-01

    According to Hinduism, the main religion of India, the end-of-life (EOL) deals with good and bad death. The WHO definition of palliative care stresses on improving not only the quality of life of patients facing incurable diseases but also their families by providing relief from the pain and suffering that includes the psychosocial and spiritual needs as well. The Indian Society of Palliative Care has been doing a commendable work and appreciable efforts are being done by the Kerala model of delivering the EOL care. The spiritual, ethical issues and ethical challenges raised when the patients are in terminal phase are also reviewed keeping in mind the socio-cultural norms. The Indian Penal Code (IPC) has lacunae, which hamper the physicians from taking proper decision in the EOL care. Some of the sections like IPC 309 are defunct and need to be changed. The Indian Society for Critical Care Medicine has developed a position statement on the patient management of the terminally ill patient in the Intensive Care Unit (ICU) which states that the society should move from the paternalistic model to the share based decision model of the West when deciding the fate of such patients. The literature review on the Indian research on palliative care shows very little emphatic results and the medical under graduates show illiteracy. To strengthen it Medical Council of India has included the palliative care in its curriculum by starting a PG course. Literature review revealed that more research from Indian perspective should be done in this area. This article studies the core issues of developing palliative care in Indian setting keeping in mind the ethical, spiritual and legal issues. PMID:23858271

  14. End-of-life care: Indian perspective

    PubMed Central

    Sharma, Himanshu; Jagdish, Vankar; Anusha, Prabhakaran; Bharti, Sharma

    2013-01-01

    According to Hinduism, the main religion of India, the end-of-life (EOL) deals with good and bad death. The WHO definition of palliative care stresses on improving not only the quality of life of patients facing incurable diseases but also their families by providing relief from the pain and suffering that includes the psychosocial and spiritual needs as well. The Indian Society of Palliative Care has been doing a commendable work and appreciable efforts are being done by the Kerala model of delivering the EOL care. The spiritual, ethical issues and ethical challenges raised when the patients are in terminal phase are also reviewed keeping in mind the socio-cultural norms. The Indian Penal Code (IPC) has lacunae, which hamper the physicians from taking proper decision in the EOL care. Some of the sections like IPC 309 are defunct and need to be changed. The Indian Society for Critical Care Medicine has developed a position statement on the patient management of the terminally ill patient in the Intensive Care Unit (ICU) which states that the society should move from the paternalistic model to the share based decision model of the West when deciding the fate of such patients. The literature review on the Indian research on palliative care shows very little emphatic results and the medical under graduates show illiteracy. To strengthen it Medical Council of India has included the palliative care in its curriculum by starting a PG course. Literature review revealed that more research from Indian perspective should be done in this area. This article studies the core issues of developing palliative care in Indian setting keeping in mind the ethical, spiritual and legal issues. PMID:23858271

  15. End-of-Life Care in the Intensive Care Unit

    PubMed Central

    Engelberg, Ruth A.; Bensink, Mark E.; Ramsey, Scott D.

    2012-01-01

    The incidence and costs of critical illness are increasing in the United States at a time when there is a focus both on limiting the rising costs of healthcare and improving the quality of end-of-life care. More than 25% of healthcare costs are spent in the last year of life, and approximately 20% of deaths occur in the intensive care unit (ICU). Consequently, there has been speculation that end-of-life care in the ICU represents an important target for cost savings. It is unclear whether efforts to improve end-of-life care in the ICU could significantly reduce healthcare costs. Here, we summarize recent studies suggesting that important opportunities may exist to improve quality and reduce costs through two mechanisms: advance care planning for patients with life-limiting illness and use of time-limited trials of ICU care for critically ill patients. The goal of these approaches is to ensure patients receive the intensity of care that they would choose at the end of life, given the opportunity to make an informed decision. Although these mechanisms hold promise for increasing quality and reducing costs, there are few clearly described, effective methods to implement these mechanisms in routine clinical practice. We believe basic science in communication and decision making, implementation research, and demonstration projects are critically important if we are to translate these approaches into practice and, in so doing, provide high-quality and patient-centered care while limiting rising healthcare costs. PMID:22859524

  16. Enhance End-of-Life Care

    MedlinePlus

    ... care provided to a dying patient. It includes palliative care (easing symptoms, such as pain) for those faced ... live. Ideally, all health care planning should include palliative care at the time of diagnosis of any life- ...

  17. Family Care During End-of-Life Vigils.

    PubMed

    Fleming-Damon, Colleen

    2016-09-01

    An end-of-life vigil is the act of being with another toward death. A family vigil at end-of-life occurs when significant others gather by the bedside of dying individuals in the weeks, days, or hours prior to the death event. It is not unusual for nurses to be present, bear witness, and share in this human experience. This article reviews seminal and current research regarding the meaning and structure of the lived experience of vigil keeping for a dying family member, and translates research to inform nurses regarding family care during the transition at end-of-life. PMID:27497019

  18. 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

  19. Finding Care at the End of Life

    MedlinePlus

    ... Hospice and Palliative Care Organization are expressly forbidden. Art Buchwald on leaving the hospice: I maintained everyone ... over on Martha's Vineyard on the way there. Art Buchwald, Too Soon to Say Goodbye (New York: ...

  20. 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

  1. Spiritual caring: end of life in a nursing home.

    PubMed

    Touhy, Theris A; Brown, Cynthia; Smith, Carol J

    2005-09-01

    The purpose of this qualitative study was to explore spiritual care for dying nursing home residents from the perspectives of registered nurses, practical nurses, certified nursing assistants, advanced practice nurses, and physicians. Five major themes emerged: honoring the person's dignity, intimate knowing in the nursing home environment, wishing we could do more, personal knowing of self as caregiver, and struggling with end-of-life treatment decisions. Spiritual caring was described within the context of deep personal relationships, holistic care, and support for residents. Spiritual care responses and similarities and differences in the experiences of participants are presented. Education and research about how to assist residents and families as they struggle with difficult end-of-life decisions, adequate time and staff to provide the kind of care they "wished they could," and development of models that honor the close connection and attachment of staff to residents could enhance end-of-life care in this setting. PMID:16190010

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

    PubMed

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

    2016-06-01

    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

  3. 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

  4. End of Life Issues in the Intensive Care Units

    PubMed Central

    Datta, Rashmi; Chaturvedi, R.; Rudra, A.; Jaideep, C.N.

    2012-01-01

    A structured discussion of End-of-Life (EOL) issues is a relatively new phenomenon in India. Personal beliefs, cultural and religious influences, peer, family and societal pressures affect EOL decisions. Indian law does not provide sanction to contentious issues such as do-not-resuscitate (DNR) orders, living wills, and euthanasia. Finally, published data on EOL decisions in Indian ICUs is lacking. What is needed is a prospective determination of which patients will benefit from aggressive management and life-support. A consensus regarding the concept of Medical Futility is necessary to give impetus to further discussion on more advanced policies including ideas such as Managed Care to restrict unnecessary health care costs, euthanasia, the principle of withhold and/or withdraw, ethical and moral guidelines that would govern decisions regarding futile treatment, informed consent to EOL decisions and do-not-resuscitate orders. This review examines the above concepts as practiced worldwide and looks at some landmark judgments that have shaped current Indian policy, as well as raising talking points for possible legislative intervention in the field. PMID:24532934

  5. End-of-life care: the long conversation.

    PubMed

    Byock, Ira; Sorrel, Amy Lynn

    2015-04-01

    California palliative care specialist, author, and consultant Ira Byock, MD, calls the issues surrounding end-of-life care "a public health crisis." But he says many of the same solutions to improving the health care system overall - shared decisionmaking, advancements in medical education, better payment and delivery structures - apply equally to this area of medical care. Dr. Byock is the General Session keynote speaker at TexMed 2015 in May. PMID:25932686

  6. Improving end-of-life care: Recommendations from the IOM.

    PubMed

    Dobbins, Elizabeth H

    2016-09-22

    A 2014 consensus report by the Institute of Medicine offers recommendations for healthcare providers to decrease unwanted care and improve the quality of life at the end of life. This article discusses the recommendations of interest to advanced practice registered nurses. PMID:27552687

  7. 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.…

  8. 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…

  9. Improving end of life care for people with dementia.

    PubMed

    Regan, Ann; Tapley, Michael; Jolley, Davis

    2014-08-01

    Nurses caring for older patients across diverse settings will provide care for people with dementia approaching the end of their lives. Demographic changes mean that the number of people dying with dementia will increase, however nurses and other healthcare professionals may be unprepared to meet their needs. Factors that are essential to provide compassionate and dignified end of life care for people with dementia include effective communication with those with cognitive impairment and an awareness of likely causes of anxiety, fear and resistance to care when carrying out interventions. Accurate assessment and pain relief are required to ensure good end of life care. Knowledge of challenging and complex issues around maintenance of nutrition and hydration requirements, and communication skills to discuss the issues with families and carers are also required. PMID:25074121

  10. [Precarity, vulnerability, anticipating end-of-life care at home].

    PubMed

    Bonneval, Camille

    2016-02-01

    Many patients want to end their life at home. Care teams adapt to these wishes and organise a form of treatment which blends safety of care and the respect of the expectations of the patients and family members. When factors of precarity increase the vulnerability inherent to the end of life, caregivers anticipate and support as best as they can the difficulties encountered as testified by a hospital at home team in Dax. PMID:26861082

  11. Ethical practice in end-of-life care in Japan.

    PubMed

    Izumi, Shigeko

    2010-07-01

    Nurses are obliged to provide quality nursing care that meets the ethical standards of their profession. However, clear descriptions of ethical practice are largely missing in the literature. Qualitative research using a phenomenological approach was conducted to explicate ethical nursing practice in Japanese end-of-life care settings and to discover how ethical practices unfold in clinical situations. Two paradigm cases and contrasting narratives of memorable end-of-life care from 32 Japanese nurses were used to reveal four levels of ethical practice: ethical, distressed, uncertain, and unethical. Having the ability to actualize, justify, and recognize what is the good and/or right differentiated between these levels of ethical practice, empirical descriptions of which are given, followed by discussion of how nurses gain the skilled knowledge necessary for ethical practice. PMID:20610579

  12. 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

  13. Control and end-of-life care: Does ethnicity matter?

    PubMed Central

    Volker, Deborah L.

    2006-01-01

    Patient control and autonomy are core values in Western bioethics and important components of end-of-life (EOL) care. However, the centrality of the patient as decision maker may not be relevant to culturally diverse groups of people. The purpose of this article is to present results of a literature review of patient control and ethnicity within the context of EOL care. The review revealed that the interplay between control and ethnicity in EOL care is complex and unpredictable. Implications for clinical care and future research are presented. PMID:16329196

  14. Assessing attitudinal barriers toward end-of-life care.

    PubMed

    Parker, Gary Dean; Smith, Tim; Corzine, Mitzi; Mitchell, Glenn; Schrader, Stuart; Hayslip, Bert; Fanning, Linda

    2012-09-01

    Due to the rapid influx of Palliative care and Hospice services over the last decade, there has been an increase in the number of medical professionals interacting with terminal patients. One of the challenges with this growth becomes how to integrate these services into already busy practices along with providing physicians the education and tools they need to provide quality care. While there is no shortage of articles focusing on the educational needs of physicians related to end of life care, less is known about the level of anxiety physicians feel about interacting with dying patients and their families. PMID:22207714

  15. 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

  16. Anaplastic gliomas: end-of-life care recommendations.

    PubMed

    Dirven, Linda; Sizoo, Eefje M; Taphoorn, Martin J B

    2015-01-01

    Despite multimodal antitumor treatment, all patients with an anaplastic glioma will be confronted with incurability in due course and enter the end-of-life (EOL) phase; the period when the patients' condition declines and tumor-directed treatment is no longer effective. Although palliative care is important in all stages of the disease, it is of utmost importance in the EOL phase. The main goal of palliative care is to improve or maintain the quality of life of the patients and their relatives through the prevention and relief of suffering. This review focuses on different aspects of the EOL phase (symptoms and signs, EOL decision-making, advance care planning, organization of care and caregiver burden) and will provide recommendations to optimize palliative care. PMID:26509292

  17. End-of-life care in advanced dementia.

    PubMed

    Heron, Christopher R; Simmons, B Brent

    2014-10-01

    In the next 30 years, the average age of the population will continue to increase, as will the prevalence of dementia. The management of advanced dementia requires the careful orchestration of communication, prognostication, patient care, and caregiver education. Understanding the specific tools available to establish prognosis and guide medical management in these complicated medical patients greatly improves patient and caregiver satisfaction at the end of the patient's life. In caring for patients with advanced-stage dementia, providers should be knowledgeable regarding the terminal nature of the condition and its common comorbid diseases, and should be prepared to educate the patients' caregivers, building a structure of support for the patient's benefit and navigating the complexities of end-of-life care. PMID:25414940

  18. Three factors critical for end-of-life care.

    PubMed

    Franey, S G

    1996-01-01

    Appropriate care of persons with life-threatening illnesses requires a different, perhaps higher level of response from organized healthcare than has been typical in the past. This involves three critical components: Leaders must be committed, visible advocates of high-quality end-of-life care. This enables them to plan changes, deploy resources, and integrate this commitment throughout the organization's strategic plan. Ensuring appropriate care of the dying requires adequate human and financial resources. First, the organization must fully identify the educational and service needs of patients, families, and care givers experiencing life-threatening illnesses. The organization must work well with other community-based organizations to address identified needs. Senior managers can improve care by personally commissioning teams, acknowledging success, and rewarding performance. Finally, organizational goals, strategies, and performance objectives must be shaped by a commitment to ensure appropriate care of the dying. Our commitment to the dying must be based on our values. An organizational "statement of rights and responsibilities" is one way of providing a visible expression of the mission, core values, and mutual responsibilities among care givers and patients, residents, HMO members, and clients. PMID:10161793

  19. Promoting high quality care for all at the end of life: review of NHS National End of Life Care Programme 2004–2007 and implications for primary care

    PubMed Central

    Hayes, Anita

    2009-01-01

    Background Research shows most people want to die at home yet most in fact die in hospital. The underlying reason for this mismatch is that health and social care services struggle to respond satisfactorily to people's varying end of life care needs. The creation of the National End of Life Care Programme in 20041 and the launch of the End of Life Care Strategy in 20082 were designed to improve this situation. Setting The National End of Life Care Programme was set up to offer patients nearing the end of their life high quality care and choices about where to die. Particular objectives were reducing the number of unnecessary emergency admissions and improving the skills of the workforce. Question How effective has the National End of Life Care Programme been in its first three years? And given that an increasing proportion of end of life care services will take place in the community, what are the implications for primary care staff? Methods The authors discuss an in-depth evaluation of the National End of Life Care Programme by Nottingham University.3 They also describe two Department of Health reports indicating how primary care services can improve the quality of end of life care services.4,5 Results The Nottingham University evaluation shows that the National End of Life Care Programme is having an impact. SHAs with high uptake of end of life care tools tend to have higher rates of home deaths. In addition staff who use the tools are more confident in broaching sensitive issues around dying. Meanwhile the DH reports provide a template for coordination of services and training of staff in the community. Conclusion There are examples around the country of excellent end of life care. But it is essential that the best is spread to the rest. That success depends on better organisation and collaboration, effective use of resources and good communication between commissioners and providers. Above all, care has to be focused on the individuals and their carers. PMID

  20. Strengthening end-of-life care through specialty nursing certification.

    PubMed

    Esper, Peg; Lockhart, Joan Such; Murphy, Cynthia Miller

    2002-01-01

    The purpose of this study was to determine the adequacy of content related to end-of-life (EOL) care in materials used in the nursing certification process across clinical nursing specialties. Thirty-eight certification examination blueprints, 18 specialty nursing scope and standards of practice documents, and 28 specialty nursing core curriculum text books were analyzed by using descriptive statistics to determine the quantity and quality of content related to nine critical areas of EOL content contained in them. Fifteen (38 per cent) of the certification examination blueprints contained at least one of the critical EOL content areas. Eight (44 per cent) of the scope and standards of practice documents contained at least one sentence on EOL care. Seven (25 per cent) of the 28 textbooks contained at least one chapter dedicated to EOL care content, and 129.5 (0.8 per cent) of the 15,706 textbook pages reviewed were dedicated to EOL care content. Expert ratings regarding the overall accuracy, currency, and comprehensiveness of EOL content found in the textbooks were poor to good. An increased focus on EOL care in the nursing specialty certification process is warranted. The content of nursing specialty certification examinations has a direct influence on nursing education as well as a significant impact on nursing practice in clinical specialty areas. PMID:12096361

  1. 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…

  2. Neurologic aspects of palliative care: the end of life setting.

    PubMed

    Sizoo, Eefje M; Grisold, Wolfgang; Taphoorn, Martin J B

    2014-01-01

    As there are, to date, few curative treatment options for many neurologic diseases, end of life (EOL) care is an important aspect of the treatment of neurologic patients. In the EOL phase, treatment should be aimed at relieving symptoms, maintaining quality of life, and facilitating a peaceful and dignified way of dying. Common signs and symptoms in the EOL phase of neurologic patients are raised intracranial pressure, seizures, confusion, cognitive deficits, and impaired motor function. Supportive treatment of these symptoms (such as analgesic drugs, dexamethasone, antiepileptic and neuroleptic drugs) is of major importance to maintain quality of life as long as possible. Another key aspect of EOL care is EOL decision making, such as withholding or withdrawing life-sustaining treatment, and palliative sedation. The main goal of EOL decision making is the prevention and relief of suffering, even if this might hasten death. Especially in advanced stages of many neurologic diseases, confusion, cognitive deficits, communication deficits, and decreasing levels of consciousness may impair the competence of patients to participate in EOL decision making. Given that patient autonomy is increasingly essential, advance care planning (ACP) at an early stage of the disease should be considered. PMID:24365413

  3. 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

  4. Understanding Health Care Decisions (at the End of Life)

    MedlinePlus

    ... do? America is a rich melting pot of religions, races, and cultures. Ingrained in each tradition are ... end of life. You might say: In my religion, we … (then describe your religious traditions regarding death). ...

  5. Empowering family members in end-of-life care decision making in the intensive care unit.

    PubMed

    Browning, Annette M

    2009-01-01

    Critical care nurses are often faced with working with families during the end-of-life care of a loved one. Often there is indecisiveness in family members of critically ill patients when faced with making these difficult decisions. The purpose of this manuscript is to describe origins of indecisiveness in family members of critically ill patients who are faced with end-of-life care decisions. Strategies to empower family members during this crucial time are also discussed. PMID:19104247

  6. 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. PMID:26691403

  7. 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. PMID:27332611

  8. Patient Safety and End-of-Life Care: Common Issues, Perspectives, and Strategies for Improving Care.

    PubMed

    Dy, Sydney Morss

    2016-09-01

    The current state of the science in the fields of patient safety and palliative and end-of-life care have many issues in common. This article synthesizes recent systematic reviews and additional research on improving patient safety and end-of-life care and compares each field's perspective on common issues, both in traditional patient safety frameworks and in other areas, and how current approaches in each field can inform the other. The article then applies these overlapping concepts to a key example area: improving documentation of patient preferences for life-sustaining treatment. The synthesis demonstrates how end-of-life issues should be incorporated into patient safety initiatives. In addition, evaluating overlap and comparable issues between patient safety and end-of-life care and comparing different perspectives and improvement strategies can benefit both fields. PMID:25877945

  9. [Managing End-of-Life Care in ALS and Its Associated Issue].

    PubMed

    Namba, Reiko

    2015-08-01

    The neurological disease amyotrophic lateral sclerosis (ALS) requires pain palliation during end-of-life stages. From the view point of a home-care doctor who assists patients with their final wishes to die at home, I summarize the issues involving the section of medical treatments, the extent and frequency of end-of-life pain, the methodology of pain palliation, and the facts of end-of-life care at home. I also present several clinical cases of end-of-life home care and discuss its demand and problems. PMID:26241361

  10. 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…

  11. Cultural differences with end-of-life care in the critical care unit.

    PubMed

    Doolen, Jessica; York, Nancy L

    2007-01-01

    Critical care nurses are providing healthcare for an increasingly multicultural population. This ever-increasing diversity in cultures and subcultures presents a challenge to nurses who want to provide culturally competent care. It is common for patients and families to face difficult decisions about end-of-life care in critical care units, and minority cultures do not always believe in the Westerner's core values of patient autonomy and self-determination. Knowledge of these cultural differences is fundamental if critical care nurses wish to provide appropriate and culturally competent information regarding end-of-life decisions. PMID:17704674

  12. 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…

  13. 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…

  14. 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…

  15. Capitated risk-bearing managed care systems could improve end-of-life care.

    PubMed

    Lynn, J; Wilkinson, A; Cohn, F; Jones, S B

    1998-03-01

    Capitated or salaried managed care systems offer an important opportunity to provide high quality, cost-effective end-of-life care. However, capitated healthcare delivery systems have strong incentives to avoid patient populations in need of such care. Care currently provided at the end of life in fee-for-service practice is commonly deficient, with high rates of avoidable pain and other burdens. Only hospice offers a better track record, yet access to hospice is limited, and length of stay is short. Traditional staff- or group-model managed care plans, with their emphasis on prevention, patient education, cost efficiency, service coordination, and integrated provider networks, present a dynamic set of conditions and organizational structures that would support real change. Advantages derived from managed care systems providing quality end-of-life care include coordinated care across delivery sites, interdisciplinary teams, integrated services, and opportunities to develop innovative care programs, service arrays, utilization controls, and accountability for care standards. We propose a special comprehensive system of managed care, which we call MediCaring, for seriously ill persons nearing the end of life. MediCaring would encompass the best elements of palliative care within a managed care structure: comprehensive, supportive, community-based services that meet personal and medical needs, a focus on patient preferences, symptom management, family counseling, and support. Other programs, such as hospice, have shown that continuity and coordinated care, financed through a capitated payment and directed at a special population, are both feasible and effective. There are obstacles to improving care at the end of life. Managed care systems, like most of medical care, have largely ignored the terminally ill patient. Current financing arrangements make it financially undesirable for insurers to recruit or retain the very sick; very ill patients can be costly over a

  16. 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…

  17. Caring for People at the End of Life: Iranian Oncology Nurses' Experiences

    PubMed Central

    Iranmanesh, Sedigheh; Abbaszadeh, Abbas; Dargahi, Helen; Cheraghi, Mohammad Ali

    2009-01-01

    Aim: To explore the meaning of Iranian oncology nurses' experiences of caring for people at the end of life. Materials and Methods: A phenomenological hermeneutic approach was applied. Fifteen nurses working in oncology units were interviewed in 2007 regarding their experiences of caring for people at the end of life. Results: Participants experienced caring for people at the end of life as sharing space and time to be lost within an organizational context. This main theme was divided into three subthemes including being attentive to the dying persons and their families, being cared for by the dying persons and their families, and being faced with barriers. Conclusion: The study suggests that the nurses' success in caring for people at the end of life is reliant on their interpersonal caring relationship. Facilitating such relationship requires the establishment of palliative care unit, incorporation of palliative care into undergraduate nursing studies, and cultural preparation through public education. PMID:20668594

  18. Developing competencies for end-of-life care in care homes.

    PubMed

    Lansdell, John; Mahoney, Mary

    2011-03-01

    The English Department of Health's End of Life Care Strategy suggests that suboptimal end-of-life care in care homes results from inadequate training of staff at all levels. This article reports on one hospice's pilot project that addressed the question, 'Does a competency development package provide a way in which the hospice can support improved end-of-life care in care homes in a sustainable way through education?' The project followed the Medical Research Council framework for the development and evaluation of complex interventions. Competency domains were identified and statements written with participating care homes. A five-day education course was delivered to support the competencies and an assessment workshop explored how the framework could be integrated into existing appraisal systems. At the end of the project, the care homes identified aspects of education and support that would ensure the competencies became fully embedded. From the conclusions drawn, a collaborative model of competency development, education, and assessment is proposed to enable a measurable and sustainable improvement in end-of-life care in the care home setting. PMID:21471911

  19. Challenges in conducting end-of-life research in critical care.

    PubMed

    Wiegand, Debra Lynn-McHale; Norton, Sally A; Baggs, Judith Gedney

    2008-01-01

    Critical care units present some unique challenges to the researcher, especially when the research topic of interest is related to end-of-life care. The purpose of this article is to address some of the methodological and practical issues related to conducting end-of-life research in the critical care setting. Recruitment barriers include gaining access to a clinical site, gaining access to patients, and prognostic uncertainty. Additional barriers include challenges related to informed consent, data collection, the research team, and ethical considerations. Strategies are described that can be used to guide researchers to conduct end-of-life research successfully in critical care. PMID:18560286

  20. Ethical Issues Surrounding End-of-Life Care: A Narrative Review

    PubMed Central

    Karnik, Sameera; Kanekar, Amar

    2016-01-01

    End-of-life care decision making carries paramount importance due to the advancements in medical sciences. Since medical science has evolved over the time and now has a potentiality to reshape the circumstances during death and in turn prolong lives, various ethical issues surround end-of-life care. The purpose of this narrative review is to discuss issues such as autonomous decision making, importance of advance directives, rationing of care in futile treatments and costs involved in providing end-of-life care. Even though much progress has been made in this area continued advancement in medical science demands further research into this topic. PMID:27417612

  1. Ethical Issues Surrounding End-of-Life Care: A Narrative Review.

    PubMed

    Karnik, Sameera; Kanekar, Amar

    2016-01-01

    End-of-life care decision making carries paramount importance due to the advancements in medical sciences. Since medical science has evolved over the time and now has a potentiality to reshape the circumstances during death and in turn prolong lives, various ethical issues surround end-of-life care. The purpose of this narrative review is to discuss issues such as autonomous decision making, importance of advance directives, rationing of care in futile treatments and costs involved in providing end-of-life care. Even though much progress has been made in this area continued advancement in medical science demands further research into this topic. PMID:27417612

  2. Physician Factors Associated with Discussions about End-of-Life Care

    PubMed Central

    Keating, Nancy L.; Landrum, Mary Beth; Rogers, Selwyn O.; Baum, Susan K.; Virnig, Beth A.; Huskamp, Haiden A.; Earle, Craig C.; Kahn, Katherine L.

    2009-01-01

    Background Guidelines recommend advanced care planning for terminally-ill patients with less than one year to live. Few data are available about when physicians and their terminally-ill patients typically discuss end-of-life issues. Methods National survey of physicians caring for cancer patients about timing of discussions regarding prognosis, DNR status, hospice, and preferred site of death with their terminally-ill patients. We used logistic regression to identify physician and practice characteristics associated with earlier discussions. Results Among 4,074 respondents, 65% would discuss prognosis “now” (patient has 4–6 months to live, asymptomatic). Fewer would discuss DNR status (44%), hospice (26%) or preferred site of death (21%) “now”, with most physicians waiting for patient symptoms or until there are no more treatments to offer. In multivariable analyses, younger physicians more often discussed prognosis, DNR status, hospice, and site of death “now” (all P<.05). Surgeons and oncologists were more likely than noncancer specialists to discuss prognosis now (P=.008), but noncancer specialists were more likely than cancer specialists to discuss DNR status, hospice, and preferred site of death “now” (all P<.001). Conclusions Most physicians report they would not discuss end-of-life options with terminally-ill patients who are feeling well, instead waiting for symptoms or until there are no more treatments to offer. More research is needed to understand physicians’ reasons for timing of discussions and how their propensity to aggressively treat metastatic disease influences timing, as well as how the timing of discussions influences patient and family experiences at the end of life. PMID:20066693

  3. Palliative and end-of-life care in pediatric solid organ transplantation.

    PubMed

    Fowler, Amy; Freiberger, Dawn; Moonan, Marilyn

    2015-02-01

    End-of-life care is a component of palliative care and takes a holistic, individualized approach to patients, focusing on the assessment of quality of life and its maintenance until the end of life, and beyond, for the patient's family. Transplant teams do not always make timely referrals to palliative care teams due to various clinician and perceived family barriers, an important one being the simultaneous, active care plan each patient would have alongside an end-of-life plan. Application of findings and further research specific to the pediatric solid organ population would be of significant benefit to guide transplant teams as to the most effective time to introduce end-of-life care, who to involve in ongoing discussions, and important ethical and cultural considerations to include in care planning. Attention must also be paid to clinician training and support in this challenging area of health care. PMID:25422076

  4. A plan to improve end-of-life care for trauma victims and their families.

    PubMed

    Jacobs, Lenworth M; Jacobs, Barbara Bennett; Burns, Karyl J

    2005-01-01

    End-of-life care for trauma patients is unique in that clinicians rarely have the advantage of knowing victims prior to the event. In this setting, the unfamiliarity with patients' wishes and values, the critical nature of the injury, the overwhelming feelings of guilt that families often experience, the suddenness and acuity of the crisis, and the need to make life-and-death decisions, can result in end-of-life care scenarios that are challenging to manage and often difficult to experience. This article describes a plan to develop, implement, and test a best practice model of end-of-life care for trauma victims and their families. PMID:16382585

  5. Palliative and End-of-Life Care in Newfoundland’s Deaf Community

    PubMed Central

    O’Shea, Fiona; Murphy, Myles

    2016-01-01

    The Deaf community is a distinct cultural and linguistic community (the uppercase D is a cultural identification). Compared to the general population, the Deaf community, as a social group, experiences poorer health status. Deaf people seek care less frequently than the general population and have fewer interactions with the health system. Their encounters with the health system are often characterized by communication difficulties, fear, mistrust, and frustration. Qualitative research was used to explore the experiences of family caregivers who provided end-of-life care for a Deaf person. Key findings indicate that the Deaf community has limited understanding of their options for palliative and end-of-life care. Communication and health literacy are key barriers to accessing appropriate end-of-life care. Pain and symptom management, consideration of physical environments, and limited access to bereavement care are common issues faced by Deaf people when caring for loved ones at the end of life. PMID:22860383

  6. 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

  7. 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. Geriatr Gerontol Int 2016; 16 (Suppl. 1): 132-139. PMID:27018291

  8. Dignified end-of-life care in the patients' own homes.

    PubMed

    Karlsson, Christina; Berggren, Ingela

    2011-05-01

    Nowadays it is increasingly common that the patients in the end of life phase choose to be cared for in their own home. Therefore it is vital to identify significant factors in order to prevent unnecessary suffering for dying patients and their families in end-of-life homecare. This study aimed to describe 10 nurses' perceptions of significant factors that contribute to good end-of-life care in the patients own home. The transcribed texts from the interviews' were analyzed using phenomenological hermeneutical method, which focuses on the life-world of human beings. The results demonstrate that good end-of-life care presupposes that the aim of the caring staff is to provide safety, autonomy and integrity for the patient and family in order to create the respect required for as good and dignified a death as possible. PMID:21558113

  9. Look at End-of-Life Care Issues for Native Americans

    MedlinePlus

    ... palliative care, hospice, and end-of-life services lags behind the rest of the nation. The AI/ ... partners and collaborators have been working on an educational approach designed, Dr. Kaur said, “to bring these ...

  10. Knowledge of Rural Nurses' Aides About End-of-Life Care

    PubMed Central

    Denham, Sharon A.; Meyer, Michael G.; Rathbun, Ann; Toborg, Mary A.; Thornton, Leslie

    2006-01-01

    Currently, little is known about the role of nurses' aides (NAs) in rural long-term care facilities or their impact on the process of death and dying in rural healthcare environments. Focus groups with NAs were held in 6 rural counties located in 5 states to assess attitudes and perceptions about end-of-life care and training needs. Key informants from 8 states and the District of Columbia added to the understandings. Nurses' aides (N = 63) and key informans (N = 21) worked in a variety of rural settings that provide end-of-life care (ie, nursing homes, hospitals, hospices, home healthcare agencies). Five themes about the needs of rural NAs around end-of-life care were identified in the focus groups, and 4 themes emerged from key informant interviews. A prototype computer-based training module on communication about end-of-life issues was developed, tested, and found useful and compelling. PMID:16775473

  11. Type of Disease May Dictate End-Of-Life Care

    MedlinePlus

    ... Cancer and dementia patients get more access to palliative care, VA study finds To use the sharing features on this ... being recognized as a false dichotomy. In fact, palliative care and curative care ... to accompany the study findings, which were published June 26 in JAMA ...

  12. [The role of care assistants at the end of life].

    PubMed

    Estrate, Margot; Lacour, Frédérique

    2015-02-01

    Personal care assistants have a special place, at home, with patients at the end of their life. At the interface between carers, relatives and the person they take care of, they often live intense situations, in close contact. The Parisian palliative care network Quiétude shares their voice. PMID:26144828

  13. 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

  14. Impact of a Disease-Specific Advance Care Planning Intervention on End-of-life Care

    PubMed Central

    Kirchhoff, Karin T.; Hammes, Bernard J.; Kehl, Karen A.; Briggs, Linda A.; Brown, Roger L.

    2012-01-01

    Background/Objectives Advance Care Planning (ACP) allows patients to state preferences for their end of life care but these preferences are frequently ignored. Following a Patient-Centered ACP interview (PC-ACP), patients’ preferences were compared to care received at end of life. Design A randomized controlled trial was conducted with patients with Congestive Heart Failure or End-stage Renal Disease and their surrogates who were randomized to receive either PC-ACP or usual care. Setting Two centers in Wisconsin with associated clinics/dialysis units provided patients. Participants Of the 313 patients and their surrogates who completed entry data, 110 died. Intervention During PC-ACP the trained facilitator assessed the patient and surrogate understanding of and experiences with the illness, provided information about disease-specific treatment options and their benefits and burden, assisted in documentation of patient treatment preferences, and assisted the surrogates in understanding the patient’s preferences and their role. Measurements Preferences were documented and then compared to the care received at end of life determined by surrogate interviews or medical charts. Results Patients (74%) frequently continued to make their own decisions about care to the end. The experimental group had fewer (1/62) but not significantly so cases where the patients could not get their wishes met about CPR than control (6/48). Significantly more experimental patients withdrew from dialysis than control. Conclusions Patients and their surrogates were generally willing to discuss preferences with a trained facilitator. Most patients received the care they desired at end of life or altered their preferences to be in accord with the care they could receive. A larger sample with surrogate decision makers is needed to detect significance. PMID:22458336

  15. Transitions in end-of-life care: the Oregon trail.

    PubMed

    Fromme, Erik K; Guthrie, Amy E; Grueber, Cynthia M

    2011-01-01

    Hospitals can create an environment that supports patients, families, and healthcare professionals so that they are better able to recognize the best way to care for each patient during times of transition. This article highlights some of the supports intentionally put into place to assist patients, family, and staff through difficult transitions at Oregon Health & Science University. These supports include an expert inpatient and outpatient palliative care team to coach patients, families, and staff at the bedside; statewide efforts to raise the skill level of all healthcare professionals through education; and the Physician Orders for Life-Sustaining Treatment (POLST) program, which helps ensure that care decisions made in one setting are respected as the patient moves to another care setting. PMID:21488559

  16. End of Life: Helping with Comfort and Care

    MedlinePlus

    ... and give you a framework for making care decisions. Publication Date: September 2012 Page Last Updated: January 22, ... Share this: ​ Table of Contents Introduction Providing Comfort at the End ...

  17. Differences in attitudes and beliefs toward end-of-life care between hematologic and solid tumor oncology specialists

    PubMed Central

    Hui, D.; Bansal, S.; Park, M.; Reddy, A.; Cortes, J.; Fossella, F.; Bruera, E.

    2015-01-01

    Background Patients with hematologic malignancies often receive aggressive care at the end-of-life. To better understand the end-of-life decision-making process among oncology specialists, we compared the cancer treatment recommendations, and attitudes and beliefs toward palliative care between hematologic and solid tumor specialists. Patients and methods We randomly surveyed 120 hematologic and 120 solid tumor oncology specialists at our institution. Respondents completed a survey examining various aspects of end-of-life care, including palliative systemic therapy using standardized case vignettes and palliative care proficiency. Results Of 240 clinicians, 182 (76%) clinicians responded. Compared with solid tumor specialists, hematologic specialists were more likely to favor prescribing systemic therapy with moderate toxicity and no survival benefit for patients with Eastern Cooperative Oncology Group (ECOG) performance status 4 and an expected survival of 1 month (median preference 4 versus 1, in which 1 = strong against treatment and 7 = strongly recommend treatment, P < 0.0001). This decision was highly polarized. Hematologic specialists felt less comfortable discussing death and dying (72% versus 88%, P = 0.007) and hospice referrals (81% versus 93%, P = 0.02), and were more likely to feel a sense of failure with disease progression (46% versus 31%, P = 0.04). On multivariate analysis, hematologic specialty [odds ratio (OR) 2.77, P = 0.002] and comfort level with prescribing treatment to ECOG 4 patients (OR 3.79, P = 0.02) were associated with the decision to treat in the last month of life. Conclusions We found significant differences in attitudes and beliefs toward end-of-life care between hematologic and solid tumor specialists, and identified opportunities to standardize end-of-life care. PMID:26041765

  18. Multimorbidity and End of Life Care in Patients with Cardiovascular Disease.

    PubMed

    Pak, Esther; Wald, Joyce; Kirkpatrick, James N

    2016-05-01

    The care of patients with severe cardiovascular disease and multimorbidity entails complex medical decision-making especially at the end of life. Proven therapies must be incorporated into the context of patient preferences, values, and goals to achieve effective titration of medications and appropriate initiation and withdrawal of cardiac device therapies. As patients decline in the terminal stages, it is important to modify medical and device therapies in accordance with goals and values, and with hemodynamic changes, increasing multimorbidity, and accumulating symptom burden. The provision of effective end of life care for those with cardiovascular disease and multimorbidity requires cooperation between palliative care, specialty care, and primary care. PMID:27113154

  19. End-of-life care in pediatrics: ethics, controversies, and optimizing the quality of death.

    PubMed

    Basu, Rajit K

    2013-06-01

    Hospitalized children constitute most annual pediatric deaths in the United States. The details of "how-to" provide end-of-life (EOL) care are not consistently taught to staff and therefore the actual delivery of EOL care is often inconsistent and invariably negatively associated with the long-term mental health of both the patient's family and care providers. This review describes the pertinent aspects of end-of-life care in pediatrics. Finally, a framework to optimize the quality of death is described, which underscores the importance of synchrony between the care team and the family at the end of a child's life. PMID:23639665

  20. 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…

  1. [Palliative care: accompanying persons at the end of life].

    PubMed

    Espinar Cid, Victoria

    2012-01-01

    The philosophy, the essence and the therapeutic goals of palliative care help the health professionals offer the patients a high quality assistance on their last stage of life. With both, a human and scientific view, it's possible to deal with the relief of suffer on all dimensions. PMID:22548665

  2. Economic implications of end-of-life care in the ICU

    PubMed Central

    Khandelwal, Nita; Curtis, J. Randall

    2014-01-01

    Purpose of review Advance care planning and palliative care interventions can improve the quality of end-of-life care by reducing unwanted high intensity care at the end of life. This may have important economic implications and may reduce financial burden of patients' families. We review the literature to examine the impact advance care planning and palliative care have on ICU utilization, specifically ICU admissions and ICU LOS, to provide insight into ways to reduce costs and financial burden of care while simultaneously improving quality of care. Recent findings We identified 3 studies assessing the impact of palliative care consultation on ICU admissions for patients with life-limiting illness; all 3 demonstrate reduced ICU admissions for patients receiving palliative care consultation. Among 16 studies evaluating ICU LOS as an outcome, 5 report no change and 11 report decrease in LOS for patients receiving advance care planning or palliative care. These studies are heterogeneous in design and target population; however, a trend towards reduced ICU utilization exists. Summary Advance care planning and palliative care can reduce ICU utilization at the end of life. The degree to which reducing ICU utilization decreases emotional and financial burden of end-of-life care for patients and families is unknown. PMID:25222642

  3. A Systematic Review of Measures of End-of-Life Care and Its Outcomes

    PubMed Central

    Mularski, Richard A; Dy, Sydney M; Shugarman, Lisa R; Wilkinson, Anne M; Lynn, Joanne; Shekelle, Paul G; Morton, Sally C; Sun, Virginia C; Hughes, Ronda G; Hilton, Lara K; Maglione, Margaret; Rhodes, Shannon L; Rolon, Cony; Lorenz, Karl A

    2007-01-01

    Objective To identify psychometrically sound measures of outcomes in end-of-life care and to characterize their use in intervention studies. Data Sources English language articles from 1990 to November 2005 describing measures with published psychometric data and intervention studies of end-of-life care. Study Design Systematic review of end-of-life care literature. Extraction Methods Two reviewers organized identified measures into 10 major domains. Eight reviewers extracted and characterized measures from intervention studies. Principal Findings Of 24,423 citations, we extracted 200 articles that described 261 measures, accepting 99 measures. In addition to 35 measures recommended in a prior systematic review, we identified an additional 64 measures of the end-of-life experience. The most robust measures were in the areas of symptoms, quality of life, and satisfaction; significant gaps existed in continuity of care, advance care planning, spirituality, and caregiver well-being. We also reviewed 84 intervention studies in which 135 patient-centered outcomes were assessed by 97 separate measures. Of these, 80 were used only once and only eight measures were used in more than two studies. Conclusions In general, most measures have not undergone rigorous development and testing. Measure development in end-of-life care should focus on areas with identified gaps, and testing should be done to facilitate comparability across the care settings, populations, and clinical conditions. Intervention research should use robust measures that adhere to these standards. PMID:17850523

  4. Advance Care Planning and the Quality of End-of-Life Care among Older Adults

    PubMed Central

    Bischoff, Kara E.; Sudore, Rebecca; Miao, Yinghui; Boscardin, W. John; Smith, Alexander K.

    2013-01-01

    Background Advance care planning is increasingly common, but whether it influences end-of-life quality of care remains controversial. Design Medicare data and survey data from the Health and Retirement Study were combined to determine whether advance care planning was associated with quality metrics. Setting The nationally representative Health and Retirement Study. Participants 4394 decedent subjects (mean age 82.6 years at death, 55% women). Measurements Advance care planning was defined as having an advance directive, durable power of attorney or having discussed preferences for end-of-life care with a next-of-kin. Outcomes included previously reported quality metrics observed during the last month of life (rates of hospital admission, in-hospital death, >14 days in the hospital, intensive care unit admission, >1 emergency department visit, hospice admission, and length of hospice ≤3 days). Results Seventy-six percent of subjects engaged in advance care planning. Ninety-two percent of advance directives stated a preference to prioritize comfort. After adjustment, subjects who engaged in advance care planning were less likely to die in a hospital (adjusted RR 0.87, 95% CI 0.80-0.94), more likely to be enrolled in hospice (aRR 1.68, 1.43-1.97), and less likely to receive hospice for ≤3 days before death (aRR 0.88, 0.85-0.91). Having an advance directive, a durable-power-of-attorney or an advance care planning discussion were each independently associated with a significant increase in hospice use (p<0.01 for all). Conclusion Advance care planning was associated with improved quality of care at the end of life, including less in-hospital death and increased use of hospice. Having an advance directive, assigning a durable power of attorney and conducting advance care planning discussions are all important elements of advance care planning. PMID:23350921

  5. 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)

  6. 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. PMID:26660780

  7. Barriers to excellent end-of-life care for patients with dementia.

    PubMed

    Sachs, Greg A; Shega, Joseph W; Cox-Hayley, Deon

    2004-10-01

    While great strides have been made recently in improving end-of-life care in the United States, people with dementia often die with inadequate pain control, with feeding tubes in place, and without the benefits of hospice care. In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness; the nature of the course and treatment decisions in advanced dementia; assessment and management of symptoms; the caregiver experience and bereavement; and health systems issues. We suggest approaches for overcoming these barriers in the domains of education, clinical practice, and public policy. As the population ages, general internists increasingly will be called upon to provide primary care for a growing number of patients dying with dementia. There are great opportunities to improve end-of-life care for this vulnerable and underserved population. PMID:15482560

  8. Effect of end-of-life care education using humanistic approach in Korea.

    PubMed

    Jo, Kae-Hwa; An, Gyeong-Ju

    2015-01-01

    The essential concept of hospice and palliative care nursing is a humanistic approach to patient care. The purpose of this study was to examine the effects of a humanistic end-of-life care course on South Korean undergraduate nursing students' attitudes toward death, death anxiety, and communication skills. A nonequivalent control group design was used. Thirty-nine students from two universities were allocated to the control (n = 20) and experimental (n = 19) groups. Participants in the experimental group were enrolled in an end-of-life care course that utilized humanistic approach two hours per week for 16 weeks. The data were analyzed using the SPSS WIN 17.0. Attitudes toward death and communication skills in the experimental group were found to have increased compared with those of the control group. In conclusion, the humanistic end-of-life care course is effective in reducing negative attitudes toward death and increasing the communication skills of Korean nursing students. PMID:26285413

  9. End-of-life care in psychiatry: 'one chance to get it right'.

    PubMed

    Galappathie, Nuwan; Khan, Sobia Tamim

    2016-02-01

    End-of-life care has been given increasing importance within healthcare settings. In June 2014, the Leadership Alliance for the Care of Dying People published One Chance to Get it Right. This nationally accepted guidance replaces previous end-of-life care pathways such as the Liverpool Care Pathway and outlines how dying patients should be managed irrespective of setting. Increasingly, patients with mental health problems are entering their final days of life within psychiatric in-patient or acute hospital settings, and psychiatrists need to be aware of the new guidance and ready to implement it within psychiatric practice. PMID:26958359

  10. End-of-life care in psychiatry: ‘one chance to get it right’

    PubMed Central

    Galappathie, Nuwan; Khan, Sobia Tamim

    2016-01-01

    End-of-life care has been given increasing importance within healthcare settings. In June 2014, the Leadership Alliance for the Care of Dying People published One Chance to Get it Right. This nationally accepted guidance replaces previous end-of-life care pathways such as the Liverpool Care Pathway and outlines how dying patients should be managed irrespective of setting. Increasingly, patients with mental health problems are entering their final days of life within psychiatric in-patient or acute hospital settings, and psychiatrists need to be aware of the new guidance and ready to implement it within psychiatric practice. PMID:26958359

  11. The important role for nurses in supporting the Asian Hindu patient and family at end of life: providing culturally sensitive end-of-life care.

    PubMed

    Singh, Anuradha; Freeman, Michelle

    2011-01-01

    As cultural ecology of Canada evolves with daily arrival of new immigrants, Canadians welcome them and feel very proud of preserving their multicultural heritage. As minority groups, especially South Asian Hindus, continue to grow, there is a need to understand their cultural perspectives and accommodate their cultural preferences for end-of-life care. This article addresses end-of-life care from a point of view of Hindu culture and religion and provides a brief overview of their beliefs and rituals related to it. This article also guides nurses to understand diverse Hindu cultural practices and beliefs to help support their patients and families at this difficult time of life. PMID:21462877

  12. [Support of a network to favour end-of-life care at home].

    PubMed

    Rautureau, Pascal

    2016-01-01

    At-home palliative care requires efficient collaboration between all the relevant healthcare professionals. The palliative care network helps to coordinate these teams. It supports professionals to assure the continuity of care, the implementation of living wills and the availability of the medicines necessary to relieve patients' discomfort or pain at the end of life. PMID:27393982

  13. Differences in attitudes to end-of-life care among patients, relatives and healthcare professionals

    PubMed Central

    Ang, Guat Cheng; Zhang, Di; Lim, Kim Hwa Jim

    2016-01-01

    INTRODUCTION This study explored and compared the differences in attitudes toward end-of-life care among patients, relatives and healthcare professionals, including doctors and nurses. METHODS We performed a descriptive study on a cross-section of the population of a tertiary hospital in Singapore. Data was collected using a questionnaire survey involving 50 participants from each of the four groups of patients, relatives, doctors and nurses. RESULTS Family members were the most commonly nominated surrogate decision-makers by the patient group (76%) and the majority of the relative group (74%) felt comfortable deciding on end-of-life care for their loved ones. However, the patient and relative groups differed significantly in their preferences on end-of-life care options, including cardiopulmonary resuscitation (CPR) (p = 0.001), intubation (p = 0.003), nasogastric tube feeding (p < 0.001) and the use of antibiotics (p = 0.023). Doctors, nurses and relatives demonstrated differences in preference between end-of-life care for themselves and for their loved ones, especially with regard to the use of nasogastric tube feeding. There was also a difference between patients and doctors in their decisions on CPR (p < 0.001) and intubation (p = 0.008). CONCLUSION This study demonstrated the importance of early planning for end-of-life care. This must be initiated proactively by healthcare professionals to engage patients in a culturally sensitive manner to discuss their preferences, in order to facilitate open communication between the patient and family. PMID:26831313

  14. Community nursing quality indicators for end-of-life care in England: identification, preparation, and coordination.

    PubMed

    Cook, Jane; Horrocks, Susan

    2016-03-01

    High-quality community nursing is essential to ensure that end-of-life care can be provided in community settings in line with patient preferences. This article examines the quality priorities commissioners sought to incentivise in end-of-life care, by reviewing a survey of Commissioning for Quality and Innovation (CQUIN) indicators for community nursing conducted in England in 2014-2015. Findings from the survey suggest that end-of-life care was not given a high priority with the CQUIN indicators for community nursing. Vigorous quality standards, including training and development, need to be in place to make sure that the potential of community nursing is being used to sensitively engage with people nearing the end of their lives and support them to plan their future care, if they so wish. PMID:26940613

  15. Concerns about end-of-life care and support for euthanasia.

    PubMed

    Givens, Jane L; Mitchell, Susan L

    2009-08-01

    Popular support for euthanasia is known to vary according to sociodemographic characteristics. However, little is known about whether support is associated with concerns regarding the emotional, physical, and economic burdens of end-of-life care. This study used data from the 1998 General Social Survey, a national survey of community-dwelling adults. The outcome variable assessed the respondents' support for a doctor's right to end life in the setting of terminal illness. Independent variables assessed the following concerns: 1) concern about the emotional burden of end-of-life decision making for family members; 2) worry about the economic burden of terminal illness; 3) concern about pain at the end of life; 4) worry that lack of money or insurance will result in second-class end-of-life care; and 5) belief that their religious community will be helpful at the end of life. Multivariable logistic regression estimated the independent effect of these concerns on support for euthanasia, adjusting for sociodemographic characteristics. Of 786 respondents, 70.6% approved of euthanasia in the setting of terminal illness. In adjusted analyses, respondents with concerns about the emotional toll of decision making on family members, economic burden, and poor health care because of lack of insurance were significantly more likely to support euthanasia. Respondents with faith in the helpfulness of their religious community were less likely to support euthanasia. In conclusion, emotional and economic concerns about end-of-life care were associated with support for the right to euthanasia. Future work can evaluate whether alleviating these concerns may reduce the perceived desire for euthanasia by patients near the end of life. PMID:19345554

  16. End-of-life care for gay, lesbian, bisexual and transgender people.

    PubMed

    Cartwright, Colleen; Hughes, Mark; Lienert, Tania

    2012-01-01

    There is little understanding in Australia of the special issues faced by gay, lesbian, bisexual and transgender people in end-of-life care and advance care planning. This exploratory study aimed to achieve an initial understanding of these issues to inform the development of a larger study involving gay, lesbian, bisexual and transgender service users. Consultations were carried out with 19 service providers and 6 gay, lesbian, bisexual and transgender community members in the Northern Rivers and metropolitan Sydney areas of New South Wales, Australia. Participants reported barriers to health care service access due to discrimination, inappropriate care and lack of knowledge among both consumers and health care workers of legal rights at the end of life. While advance care planning can assist with improving end-of-life care, respondents reported a number of obstacles. These included a lack of knowledge and absence of perceived need and the additional obstacle of social isolation, leading to difficulties identifying alternative decision-makers. The study highlighted the need for education for gay, lesbian, bisexual and transgender people and health and aged care providers on existing legal provisions to prevent discrimination in end-of-life care. PMID:22468824

  17. End-of-life care beliefs among Hindu physicians in the United States.

    PubMed

    Ramalingam, Vijaya Sivalingam; Saeed, Fahad; Sinnakirouchenan, Ramapriya; Holley, Jean L; Srinivasan, Sinnakirouchenan

    2015-02-01

    Several studies from the United States and Europe showed that physicians' religiosity is associated with their approach to end-of-life care beliefs. No such studies have focused exclusively on Hindu physicians practicing in the United States. A 34-item questionnaire was sent to 293 Hindu physicians in the United States. Most participants believed that their religious beliefs do not influence their practice of medicine and do not interfere with withdrawal of life support. The US practice of discussing end-of-life issues with the patient, rather than primarily with the family, seems to have been adopted by Hindu physicians practicing in the United States. It is likely that the ethical, cultural, and patient-centered environment of US health care has influenced the practice of end-of-life care by Hindu physicians in this country. PMID:24052431

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

    PubMed Central

    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 graduates from 1957 to 2004. We used data on EOLCP among older adults in the most recent (2003–2004) wave of this survey. Hierarchical logistic regression models are used to estimate the effects of care receipt and the moderating effects of personality. Results: Compared with their peers who are not receiving care, care recipients are more likely to engage in informal discussion on EOLCP. This association between care receipt and informal EOLCP is strengthened when the individual scores high on openness. Implications: Health practitioners should take into account older adults’ care needs and differing personality traits while helping older adults make successful EOLCP. PMID:22459693

  19. 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. PMID:24935483

  20. 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…

  1. 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…

  2. 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…

  3. 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…

  4. 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. |

  5. End-of-life care for patients with dementia in the United States: institutional realities.

    PubMed

    Gusmano, Michael

    2012-10-01

    Few are satisfied with end-of-life care in the United States. For families and friends of people with dementia, end-of-life care is particularly frustrating. Providing better end-of-life care to people with dementia is urgent because the prevalence of the disease is increasing rapidly. Dementia is currently the seventh leading cause of death in the United States and fifth leading cause of death among people aged 65 years and older. By 2050, there will be around 19 million people with Alzheimer's disease. This article reviews ethical and policy challenges associated with providing end-of-life care for people with dementia in the United States. I explain how disagreements about the meaning of futility lead to poor care for people with dementia. Most people agree that we should not provide care that is futile, but there is little agreement about how futility should be defined. US policies and politics clearly tip the balance in the direction of treatment, even in the face of strong evidence that such care does more harm than good. Although we may never reach a consensus, it is important to address these questions and think about how to develop policies that respect the different values. PMID:23079305

  6. [Individual neonatal end-of-life care and family-centred bereavement support].

    PubMed

    Garten, L; von der Hude, K; Rösner, B; Klapp, C; Bührer, C

    2013-06-01

    Neonatal end-of-life care and family-centred bereavement support in perinatal medicine are a multiprofessional challenge directed to the dying newborn and the parents as well as to the care-givers. Clinical experience shows that many aspects of individual neonatal end-of-life care and family-centred bereavement support are not well known to the health-care providers. This is especially true for a standardised quality management and the components of bereavement support offered to parents. An interdisciplinary concept for an individual neonatal end-of-life care and famlily-centred bereavement support has been developed at the Center of Perinatal Medicine at the Charité, Berlin. The concept aims for two main aspects: (1) meeting the individual medical, psychological, emotional and spiritual needs of the dying newborn, the parents and family, and (2) facilitating standardised and process-orientated preparation, evaluation and reflexion of every case of end-of-life care. In this article some recommendations for implementing a basic care concept for families and their dying newborns are presented. PMID:23812919

  7. Tolstoy, stories, and facilitating insight in end of life care: exploring ethics through vicarious experience.

    PubMed

    Begley, Ann Marie; Glackin, Marie; Henry, Richard

    2011-07-01

    Facilitating moral insight in end of life care can be challenging, and the purpose of this paper is to illustrate how this can be nurtured by means of creative literature. Tolstoy's Death of Ivan Ilych is presented as an example of such literature. Aristotle's Nichomean Ethics provides the philosophical underpinning for the method used. Sources also include the nursing literature, and students' evaluations of the impact of Tolstoy's novella on their ability to perceive the ethical issues arising in end of life care. Comments from evaluations were analysed and significant themes emerged. Students' comments clearly support the suggestion that use of this novella has facilitated insight into ethical issues at the end of life. Evaluations also indicate that vicarious experience gained through reading this novella has helped to nurture sensitivity and professional insight into the importance of compassion and offering 'comfort' to the dying person. PMID:20974506

  8. Caring for Older Patients on Peritoneal Dialysis at End of Life.

    PubMed

    Meeus, Frédérique; Brown, Edwina A

    2015-11-01

    End of life is the last phase of life, not merely the last few days. For many older patients on peritoneal dialysis (PD), the end-of-life phase commences with the start of dialysis. The principal aim of management of this phase should be optimizing the quality of life of the patient. Evidence suggests that patients on dialysis mostly want involvement in decisions at this stage, but most do not have the opportunity to do so. Management should therefore include discussions with the patient and their family to determine lifestyle goals, treatment wishes, and ceilings of care (including resuscitation and dialysis withdrawal). Care should also include symptom identification and management, psychosocial support, and adaptation of dialysis to the ability and needs of the patient. By doing this, quality of life at end of life is achievable. PMID:26702011

  9. 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. PMID:26681362

  10. 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…

  11. 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)

  12. 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…

  13. Promoting peaceful death for Thai Buddhists: implications for holistic end-of-life care.

    PubMed

    Kongsuwan, Waraporn; Touhy, Theris

    2009-01-01

    The conceptual model of promoting a peaceful death was synthesized from Buddhist philosophy, the theory of "Peaceful End of Life," related literature, and a story from experience. Nurses can use this model as a practical guide for the holistic care of Thai Buddhists who are dying. PMID:19713787

  14. "Care-getting": a conceptual model of marshalling support near the end of life.

    PubMed

    Kahana, Eva; Kahana, Boaz; Wykle, May

    2010-02-01

    This paper offers a conceptual framework that focuses on "care-getting", a proactive means of insuring responsive and high quality care that is necessary for maintenance of good quality of life during the final years of life. Unlike traditional formulations and empirical studies that consider end of life issues among the terminally ill, we call for a broader consideration of the final years of life among older adults experiencing different health trajectories. We expect frail older adults' dispositions, proactive adaptations, and responsiveness of their informal and formal social resources, to play key roles in achieving good quality of life close to the end of life. Such positive outcomes near the end of life help preserve the integrity of the person and contribute to a sense of being cared for [1]. The conceptual framework we propose is a necessary next step for social gerontology, in order to incorporate preparation for dying into the life course. This important final life stage has been previously neglected in gerontological life course theory. Cross-cultural considerations in getting responsive care close to the end of life are discussed. PMID:20298173

  15. 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,…

  16. [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. PMID:26861084

  17. The ethics of end-of-life care for prison inmates.

    PubMed

    Cohn, F

    1999-01-01

    Author contends that the philosophical arguments involving the value of persons, social contract theory, the definition of justice, the notion of just desserts, and a utilitarian calculus of societal benefits and burdens provide support for an ethical imperative to provide end-of-life care to dying prisoners. PMID:11067602

  18. 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)

  19. 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…

  20. 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…

  1. [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. PMID:26567077

  2. 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…

  3. 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…

  4. End of Life Issues

    MedlinePlus

    Planning for the end of life can be difficult. But by deciding what end-of-life care best suits your needs when you are healthy, you can ... right choices when the time comes. End-of-life planning usually includes making choices about the following: ...

  5. Medical futility and end-of-life care: perspectives from practice. Coping with medical futility.

    PubMed

    McCroskey, Diane

    2015-01-01

    Advances in technology a nd medical knowledge have dramatically altered our ability to sustain life in the Intensive Care Unit (ICU). Many things come into play for the nurse when establishing patient goals, respecting patient's wishes, and valuing spiritual and cultural beliefs in end-of-life care. A veteran ICU nurse shares the challenges of caring and how, she copes when medical interventions seem futile. PMID:25898443

  6. End-of-life care: a public health crisis and an opportunity for managed care.

    PubMed

    Byock, I R

    2001-12-01

    American society is failing to provide humane care for people who are dying. Unnecessary physical suffering continues even in our most prestigious institutions, and the enormous burden on family caregivers remains unrecognized. The cost of health services and burdensome regulations remain major barriers to improving the quality of care. Healthcare planners and policy makers are gradually awakening to the realities of an increasingly older population and a looming labor shortage of qualified paid caregivers. Several features of palliative care render it attractive within managed care. Evidence is emerging that palliative care, focused on meticulous prospective care planning and coordination, delivers high quality and cost-effective end-of-life care. Innovative demonstration projects around the country are exploring models for integrating palliative care within the routine operational processes and protocols of health systems and are providing examples of feasible "best practices" crucial for raising public expectations and framing possible solutions for policymakers and planners. Ultimately, it will be a marketing asset for a managed care organization to be known as a center of excellence in palliative care, and in some markets it will be a necessity. The goals of managed care and palliative care are already well aligned, joint efforts among clinicians, provider institutions, insurers, and employee health benefit managers can address the needs and preferences of dying patients and families, while increasing public trust in managed care. PMID:11767298

  7. 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

  8. 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. PMID:25773135

  9. Evaluating a Clinical Decision Support Interface for End-of-Life Nurse Care

    PubMed Central

    Febretti, Alessandro; Stifter, Janet; Keenan, Gail M; Lopez, Karen D; Johnson, Andrew; Wilkie, Diana J

    2016-01-01

    Clinical Decision Support Systems (CDSS) are tools that assist healthcare personnel in the decision-making process for patient care. Although CDSSs have been successfully deployed in the clinical setting to assist physicians, few CDSS have been targeted at professional nurses, the largest group of health providers. We present our experience in designing and testing a CDSS interface embedded within a nurse care planning and documentation tool. We developed four prototypes based on different CDSS feature designs, and tested them in simulated end-of-life patient handoff sessions with a group of 40 nurse clinicians. We show how our prototypes directed nurses towards an optimal care decision that was rarely performed in unassisted practice. We also discuss the effect of CDSS layout and interface navigation in a nurse’s acceptance of suggested actions. These findings provide insights into effective nursing CDSS design that are generalizable to care scenarios different than end-of-life.

  10. An appraisal of ethical issues in end-of-life care.

    PubMed

    Ilemona, Ekore Rabi

    2014-01-01

    Caring for patients at the end-of-life period could involve a number of situations and incidents that pose moral dilemma for both the health workers and the patients' family members or loved ones. Some of these issues include shared decision-making, the right to refuse medical treatment, medical futility, and euthanasia versus assisted suicide, information disclosure (truth-telling), substitute decision-making, and confidentiality. They may seem improbable or remote, until one is confronted with them real-time. Providing good care for dying patients requires that physicians and other members of the health care team be knowledgeable of ethical issues pertinent to end-of-life care. PMID:25508493

  11. An appraisal of ethical issues in end-of-life care.

    PubMed

    Ilemona, Ekore Rabi

    2014-01-01

    Caring for patients at the end-of-life period could involve a number of situations and incidents that pose moral dilemma for both the health workers and the patients' family members or loved ones. Some of these issues include shared decision-making, the right to refuse medical treatment, medical futility, and euthanasia versus assisted suicide, information disclosure (truth-telling), substitute decision-making, and confidentiality. They may seem improbable or remote, until one is confronted with them real-time. Providing good care for dying patients requires that physicians and other members of the health care team be knowledgeable of ethical issues pertinent to end-of-life care. PMID:25470866

  12. A Time and Place: The Role of Social Workers in Improving End-of-Life Care.

    PubMed

    Peres, Judith

    2016-01-01

    Americans are living longer, but dying after a prolonged period of management of multiple chronic illnesses and functional disabilities. Despite waves of public and professional activity targeted toward improving care for the dying and supporting the families, gaps in care and challenges in end-of-life care persist. Contentious issues such as the so-called "death panels" or physician payment for discussion of advance directives and care wishes at the end of life; aid in dying; and regarding individuals who actively choose death (case of Brittney Maynard) are continually debated in the public media. Progress toward improvement in the experience of dying remains incremental and change has been slow. With the release of a second Institute of Medicine ( 2014 ) report devoted to what it means to die in America in the 21st century, momentum and opportunity for change may increase. If this is to happen, social workers will need to deliver the range of biopsychosocial care that patients and families so desperately need. However, holistic care of the individual will only improve, if the nation also addresses ongoing systemic problems in financing, policy, and service delivery in end-of-life care. PMID:27462948

  13. Exhaust All Measures: Ethical Issues in Pediatric End-of-Life Care.

    PubMed

    Thieleman, Kara J; Wallace, Cara; Cimino, Andrea N; Rueda, Heidi A

    2016-01-01

    The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for health care decisions of children under age 18, although the child's wishes must also be considered. Social workers must balance core social work values, bioethical values, and psychosocial issues presented by such situations. While studies have been conducted with physicians and nurses regarding ethical issues in pediatric end-of-life care settings, little is known about how social workers experience these conflicts. This article utilizes two vignettes to illustrate potential ethical issues in this setting and applies the National Association of Social Workers Standards for Palliative and End of Life Care (NASW, 2004 ) to explore options for their resolution. These vignettes provide descriptions of possible reactions in this setting and can be used as a basis for further exploration of ethics in pediatric end-of-life care from a social work perspective. PMID:27462957

  14. Optimal healing environments in end-of-life care and beyond.

    PubMed

    Silver, Susan

    2004-01-01

    This paper is based on the premise that end-of-life care (EOLC) is the incarnation of an optimal healing environment (OHE). EOLC is characterized by factors that distinguish it from other forms of care or patient populations. These include: (1) formal EOLC did not evolve within the health care "industry," but was a reaction to that industry, created as an OHE; (2) patients nearing the end of life may be cared for in a formal "end-of-life" environment or may be located in other settings or systems; and (3) EOLC has a preordained outcome. Patients die in a variety of settings for medical, cultural, and accessibility reasons, and EOLC principles and practices are only beginning to be integrated into the full range of care settings. This paper proposes and defends the use of a single-question intervention to study the effect of EOLC care on its recipients, and considers the difficulty of establishing meaningful outcome variables. This paper also suggests that the principles of EOLC are well-suited to all phases of health services delivery and recommends the practical application of its elements throughout the medical services arena. PMID:15630837

  15. 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. PMID:16420213

  16. A Literature Review on Care at the End-of-Life in the Emergency Department

    PubMed Central

    Forero, Roberto; McDonnell, Geoff; Gallego, Blanca; McCarthy, Sally; Mohsin, Mohammed; Shanley, Chris; Formby, Frank; Hillman, Ken

    2012-01-01

    The hospitalisation and management of patients at the end-of-life by emergency medical services is presenting a challenge to our society as the majority of people approaching death explicitly state that they want to die at home and the transition from acute care to palliation is difficult. In addition, the escalating costs of providing care at the end-of-life in acute hospitals are unsustainable. Hospitals in general and emergency departments in particular cannot always provide the best care for patients approaching end-of-life. The main objectives of this paper are to review the existing literature in order to assess the evidence for managing patients dying in the emergency department, and to identify areas of improvement such as supporting different models of care and evaluating those models with health services research. The paper identified six main areas where there is lack of research and/or suboptimal policy implementation. These include uncertainty of treatment in the emergency department; quality of life issues, costs, ethical and social issues, interaction between ED and other health services, and strategies for out of hospital care. The paper concludes with some areas for policy development and future research. PMID:22500239

  17. Administrators’ Perspectives on Changing Practice in End-of-Life Care in a State Prison System

    PubMed Central

    Penrod, Janice; Loeb, Susan J.; Smith, Carol A.

    2013-01-01

    Objective Sentencing trends have created a demographic shift in prison populations. Greater numbers of inmates are aging and dying in prison, creating a demand for enhanced end-of-life care. Changing practice to meet escalating care demands in corrections settings is complicated by economic constraints, attitudinal barriers, and organizational features. This study explored perspectives of end-of-life care held by administrators in a state prison system to reveal challenges to changing practice to meet the needs of inmates suffering advanced illness and dying in prison. Design and Sample Qualitative interviews were conducted with 12 administrators from the central office of a state department of corrections. Results Key influences impacting end-of-life care services included: local prison culture; treatment versus security focus; case-by-case consideration; public sentiment; budget neutral approaches; and conflicting views of service targets. Conclusions These findings revealed the organizational structures, attitudes, and beliefs held by the administrative echelon of a state prison system and were used to guide the derivation of discrete approaches to changing practice in this complex system. Contextual evaluation permitted a much deeper understanding of the influences on changing practice in this hierarchical bureaucracy. This type of preliminary evaluation is crucial to infusing new practice initiatives in complex organizations caring for stigmatized, at-risk populations. PMID:24588128

  18. The ethics of end-of-life care for patients with ESRD.

    PubMed

    Davison, Sara N

    2012-12-01

    Patients with ESRD have extensive and unique palliative care needs, often for years before death. The vast majority of patients, however, dies in acute care facilities without accessing palliative care services. High mortality rates along with a substantial burden of physical, psychosocial, and spiritual symptoms and an increasing prevalence of decisions to withhold and stop dialysis all highlight the importance of integrating palliative care into the comprehensive management of ESRD patients. The focus of renal care would then extend to controlling symptoms, communicating prognosis, establishing goals of care, and determining end-of-life care preferences. Regretfully, training in palliative care for nephrology trainees is inadequate. This article will provide a conceptual framework for renal palliative care and describe opportunities for enhancing palliative care for ESRD patients, including improved chronic pain management and advance care planning and a new model for delivering high-quality palliative care that includes appropriate consultation with specialist palliative care. PMID:22997341

  19. 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. PMID:25201666

  20. 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

  1. 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;…

  2. 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

  3. 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

  4. End-of-life practices in a tertiary intensive care unit in Saudi Arabia.

    PubMed

    Aldawood, Abdulaziz S; Alsultan, Mohammad; Arabi, Yaseen M; Baharoon, Salim A; Al-Qahtani, S; Al-Qahtani, M; Haddad, Samir H; Al-Dorzi, Hasan M; Al-Jahdali, Hamdan; Jahdali, Hamdan A; Alatassi, Abdulaleem; Rishu, Asgar H

    2012-01-01

    Our aim was to evaluate end-of-life practices in a tertiary intensive care unit in Saudi Arabia. A prospective observational study was conducted in the medical-surgical intensive care unit of a teaching hospital in Riyadh, Saudi Arabia. Over the course of the one-year study period, 176 patients died and 77% of these deaths were preceded by end-of-life decisions. Of these, 66% made do-not-resuscitate decisions, 30% decided to withhold life support and 4% withdrew life support. These decisions were made after a median time of four days (Q1 to Q3: 1 to 9) and at least one day before death (Q1 to Q3: 1 to 4). The patients' families or surrogates were informed for 88% of the decisions and all decisions were documented in the patients' medical records. Despite religious and cultural values, more than three-quarters of the patients whose deaths were preceded by end-of-life decisions gave do-not-resuscitate decisions before death. These decisions should be made early in the patients' stay in the intensive care unit. PMID:22313074

  5. 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

  6. End-of-life care--what do cancer patients want?

    PubMed

    Khan, Shaheen A; Gomes, Barbara; Higginson, Irene J

    2014-02-01

    Patients with cancer frequently suffer from debilitating physical symptoms and psychological distress, particularly at the end of life. Interventions to help alleviate these problems are often complex and multifactorial. Palliative care services and therapeutic interventions have developed in a variable manner, often with limited evaluation of clinical effectiveness and affordability, resulting in a relatively weak evidence base. The health care provided to patients with advanced-stage cancer does not always correlate with what is known about their preferences for care. In this Review, we discuss the preferences of patients with cancer regarding their end of life care, including the importance of early provision of palliative care, and the central role of advance care planning in meeting patients' preferences. It has been shown that many patients with cancer wish to die at home. We discuss the factors that contribute to the place of death, including environmental factors, disease-specific issues, and the availability of resources. There has been a recent upward trend in the number of patients with cancer who die in their preferred place of care, and important contributors--such as community palliative care, advance care planning, and improvements in palliative care services as a result of robust research studies--are considered. PMID:24281062

  7. Team-Based Models for End-of-Life Care: An Evidence-Based Analysis

    PubMed Central

    2014-01-01

    Background End of life refers to the period when people are living with advanced illness that will not stabilize and from which they will not recover and will eventually die. It is not limited to the period immediately before death. Multiple services are required to support people and their families during this time period. The model of care used to deliver these services can affect the quality of the care they receive. Objectives Our objective was to determine whether an optimal team-based model of care exists for service delivery at end of life. In systematically reviewing such models, we considered their core components: team membership, services offered, modes of patient contact, and setting. Data Sources A literature search was performed on October 14, 2013, using Ovid MEDLINE, Ovid MEDLINE In-Process and Other Non-Indexed Citations, Ovid Embase, EBSCO Cumulative Index to Nursing & Allied Health Literature (CINAHL), and EBM Reviews, for studies published from January 1, 2000, to October 14, 2013. Review Methods Abstracts were reviewed by a single reviewer and full-text articles were obtained that met the inclusion criteria. Studies were included if they evaluated a team model of care compared with usual care in an end-of-life adult population. A team was defined as having at least 2 health care disciplines represented. Studies were limited to English publications. A meta-analysis was completed to obtain pooled effect estimates where data permitted. The GRADE quality of the evidence was evaluated. Results Our literature search located 10 randomized controlled trials which, among them, evaluated the following 6 team-based models of care: hospital, direct contact home, direct contact home, indirect contact comprehensive, indirect contact comprehensive, direct contact comprehensive, direct, and early contact Direct contact is when team members see the patient; indirect contact is when they advise another health care practitioner (e.g., a family doctor) who sees

  8. Health care and end-of-life decisions: community engagement with adults in East Harlem.

    PubMed

    Boucher, Nathan A; Guadalupe, Erika; Lara, Luz; Alejandro, Maria

    2014-12-01

    This was a model of community engagement for a Hispanic population in East Harlem, New York City to assess health care decision-making processes, with a focus on end-of-life decisions, among older men and women. The design involved two senior center-based semi-structured focus groups conducted in Spanish and English followed by a series of bilingual skills-building workshops focusing on situational decision-making. All program aspects were conducted between April and June of 2013. The themes for the workshops included: "Getting the most from your pharmacist encounter;" "How to prepare for your primary care visit;" and "I am getting discharged from the hospital: what do I do?" For the two focus groups, 21 community members participated, each of whom self-identified as Hispanic or Latina/o. Ten common themes emerged from a two-stage/two coder, grounded theory-based qualitative analysis and included: Where Community Members Receive Care; General Challenges, Cultural Challenges, and Benefits of Health Care in New York City/East Harlem; Key Facilitators in Health Care Decision Making; Key Facilitators in End-of-Life Decision Making; and Perceptions of Health Care Disparity. Themes and their subcategories, discussed herein, may offer guidance for area health providers and health care delivery entities. This project served as formative, qualitative data collection for a larger scale forthcoming community assessment while offering community benefit related to health decision-making, especially end-of-life decision making, in the context of a rapidly changing urban American health care delivery landscape. Application of this synergistic community benefit and data collection model is recommended for similar and other communities in the U.S. and other countries. PMID:25108424

  9. Truth Telling and Treatment Strategies in End-of-Life Care in Physician-Led Accountable Care Organizations

    PubMed Central

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

    2015-01-01

    Abstract 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. PMID:25906093

  10. [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. PMID:25132259

  11. Goals of care toward the end of life: a structured literature review.

    PubMed

    Kaldjian, Lauris C; Curtis, Ann E; Shinkunas, Laura A; Cannon, Katrina T

    Goals of care are often mentioned as an important component of end-of-life discussions, but there are diverse assessments regarding the type and number of goals that should be considered. To address this lack of consensus, we searched MEDLINE (1967-2007) for relevant articles and identified the number, phrasing, and type of goals they addressed. An iterative process of categorization resulted in a list of 6 practical, comprehensive goals: (1) be cured, (2) live longer, (3) improve or maintain function/quality of life/ independence, (4) be comfortable, (5) achieve life goals, and (6) provide support for family/caregiver. These goals can be used to articulate goal-oriented frameworks to guide decision making toward the end of life and thereby harmonize patients' treatment choices with their values and medical conditions. PMID:19106284

  12. 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. PMID:27211055

  13. 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

  14. Clinical review: Ethics and end-of-life care for critically ill patients in China

    PubMed Central

    2013-01-01

    Critical care medicine in China has made great advances in recent decades. This has led to an unavoidable issue: end-of-life ethics. With advances in medical technology and therapeutics allowing the seemingly limitless maintenance of life, the exact time of death of an individual patient is often determined by the decision to limit life support. How to care for patients at the end of life is not only a medical problem but also a social, ethical, and legal issue. A lot of factors, besides culture, come into play in determining a person’s ethical attitudes or behaviors, such as experience, education, religion, individual attributes, and economic considerations. Chinese doctors face ethical problems similar to those of their Western counterparts; however, since Chinese society is different from that of Western countries in cultural traditions, customs, religious beliefs, and ethnic backgrounds, there is a great difference between China and the Western world in regard to ethics at the end of life, and there is also a huge controversy within China. PMID:24313980

  15. Evaluation of an Educational Workshop to Increase Comfort Levels of Professional Caregivers with End-of-Life Care.

    PubMed

    Corcoran, Karen

    2016-01-01

    A workshop to enable professional caregivers to meet the needs of patients, families, and themselves during the end-of-life process is described. This quality initiative sought to improve professional caregivers' comfort with end-of-life care through use of an education intervention. PMID:27323469

  16. 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

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

    PubMed

    Franke, Richard J

    2016-03-01

    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

  18. [The end of life in a long-term care unit].

    PubMed

    Roche, Pauline; Bailly, Michelle

    2014-01-01

    Following the principles of Leonetti's Law and to improve practices in long-term care units, caregivers decided to create a decision aid to help in the process to determine whether to limit care, adapted to the profile of the unit's residents. The aid is the fruit of a collective and ethical approach which helps caregivers decide on the action to take in the event of an acute crisis and enables the patient to express their wishes concerning the end of life. PMID:25597066

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

    PubMed Central

    Lahaj, Mary

    2012-01-01

    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. PMID:23610504

  20. Hardships of end-of-life care with court-appointed guardians.

    PubMed

    Hastings, Kylie B

    2014-02-01

    In the United States, the court-appointed guardians do not have the ability to make decisions regarding end-of-life (EOL) care for their clients. Additionally, the process of initiating EOL care measures can be slow and cumbersome, despite an existing process of getting approval for such care. This process has the potential to prolong suffering and delay imperative decisions. This article reviews the hardships that patients, court-appointed guardians, and health care staff endure while moving through the oppressive process of obtaining EOL care orders through the court. This article also proposes ways of tuning up the laws, regulations, and communications to make it easier and faster to obtain orders regarding EOL care to preserve the dignity of our patients and loved ones. "A guardianship is a legal relationship created when a person or institution named in a will or assigned by the court to take care of minor children or incompetent adults." PMID:23503563

  1. Geographic variation of inpatient care costs at the end of life

    PubMed Central

    Geue, Claudia; Wu, Olivia; Leyland, Alastair; Lewsey, Jim; Quinn, Terry J.

    2016-01-01

    Background: costs incurred at the end of life are a main contributor to healthcare expenditure. Urban–rural inequalities in health outcomes have been demonstrated. Issues around geographical patterning of the association between time-to-death and expenditure remain under-researched. It is unknown whether differences in outcomes translate into differences in costs at the end of life. Methods: we used a large representative sample of the Scottish population obtained from death records linked to acute inpatient care episodes. We performed retrospective analyses of costs and recorded the most frequent reasons for the last hospital admission. Using a two-part model, we estimated the probability of healthcare utilisation and costs for those patients who incurred positive costs. Results: effects of geography on costs were similar across diagnoses. We did not observe a clear gradient for costs, which were lower in other urban areas compared with large urban areas. Patients from remote and very remote areas incurred higher costs than patients from large, urban areas. The main driver of increased costs was increased length of stay. Conclusions: our results provide evidence of additional costs associated with remote locations. If length of stay and costs are to be reduced, alternative care provision is required in rural areas. Lower costs in other urban areas compared with large urban areas may be due to urban centres incurring higher costs through case-mix and clinical practice. If inequalities are driven by hospital admission, for an end of life scenario, care delivered closer to home or home-based care seems intuitively attractive and potentially cost-saving. PMID:27025763

  2. Parent Involvement in End-of-Life Care and Decision Making in the Newborn Intensive Care Unit: An Integrative Review

    PubMed Central

    Eden, Lacey M.; Callister, Lynn Clark

    2010-01-01

    Survival rates for very preterm and critically ill infants are increasing, raising complex ethical issues for health-care providers and parents who face the challenge of making end-of-life decisions for newborns. The purpose of this integrative literature review was to evaluate parental involvement in end-of-life care and decision making for their infant in the newborn intensive care unit. Findings revealed that establishing good relationships and clear communication between health-care providers and parents builds trust and eases stress placed on parents making decisions about the care of their infant. Palliative care programs provide support for parents and facilitate their decision making. Parents can be educated about how to communicate with health-care providers. Educating nurses on how to provide end-of-life care may also help improve support for parents during this difficult time. Additional research is recommended to examine parents' needs during and after end-of-life care decisions for their newborn. PMID:21197127

  3. Self-care at the end of life in patients with heart failure.

    PubMed

    Zambroski, Cheryl

    2008-01-01

    Promoting adherence to self-care illness management strategies among patients with heart failure (HF) has been associated with a number of positive health outcomes. Yet, little is known about health outcomes related to self-care in the "sickest of the sick"-those patients with advanced HF who are approaching the end of life. Clinicians and researchers must determine how self-care interventions are defined in the advanced HF population. For example, what is meant by self-care illness management in patients who are symptomatic with exertion may differ from that of patients who are predominantly symptomatic at rest. Our challenge is to develop the simplest, least burdensome self-care illness management interventions that target the most meaningful outcomes for patients, their families, and the healthcare system. PMID:18437069

  4. Detained and Dying: Ethical Issues Surrounding End-of-Life Care in Prison.

    PubMed

    Stensland, Meredith; Sanders, Sara

    2016-01-01

    Prisons are increasingly being called upon to provide end-of-life (EOL) care within the restrictive correctional environment. Several relatively recent phenomena have brought medical ethics to the forefront of prison EOL care-including aging behind bars, a paradigm shift in prison culture, the increasing rate of in-prison deaths, and the corresponding prison hospice movement. This article examines prominent ethical issues that emerge for prison personnel who are tasked with providing care to terminally ill offenders by presenting three offender composite characters that exemplify dying offenders and emergent ethical issues surrounding their care. Identification and critical analysis of these ethical issues demonstrate the need for strong commitment to ethical practice and highlights specific issues for prisons to examine in their own EOL care practice. PMID:27462955

  5. 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

  6. Better care for the dying. Hawaii healthcare system develops a manual for end-of-life care.

    PubMed

    Kalua, P M; Tan, S Y; Bacon, J G

    1999-01-01

    In early 1996, as it became clear that Americans were becoming increasingly concerned about end-of-life care, the leaders of St. Francis Healthcare System (SFHS), Honolulu, convened a meeting at which local people--community and parish representatives as well as healthcare professionals--discussed the matter. The meeting's participants identified 10 issues as essential in end-of-life care: decision making, pain management and comfort care, pastoral and spiritual care, psychosocial care, hospice and home care, cardiopulmonary resuscitation, futility, withholding and withdrawing treatment, artificial nutrition and hydration, physician-assisted suicide and euthanasia. The participants then divided themselves into 10 teams, each of which spent six months studying one of the identified essential issues. In each case, the team reviewed the relevant SFHS policies and procedures and compared them with national standards. The team also interviewed staff members about the policies and procedures, comparing the written versions with actual practices. Each team then wrote a chapter on its assigned issue, after which a core committee wove the chapters into an end-of-life care manual for SFHS. The manual was published in June 1997. The system's leaders currently use the manual to educate staff members in good end-of-life care. PMID:10351504

  7. Prognosis terminal: truth-telling in the context of end-of-life care.

    PubMed

    Rich, Ben A

    2014-04-01

    Recent contributions to the medical literature have raised yet again the issue of whether the term "terminal" is an intelligible one and whether there is a consensus view of its meaning that is sufficient to justify or even require its use in discussing end-of-life care and treatment options with patients. Following a review of the history and development of informed consent, persistent problems with the communication of prognosis and the breaking of bad news are analyzed. The author argues that candid but compassionate communication between physicians and patients about prognosis is essential to informed decisions about both disease-directed (curative) and palliative therapies. PMID:24534742

  8. Psychosocial, Cultural, and Spiritual Health Disparities in End of Life and Palliative Care: Where We Are and Where We Need to Go

    PubMed Central

    Evans, Bronwynne C.; Ume, Ebere

    2012-01-01

    Background Although health disparities are well documented, the extent to which they affect end of life care is unknown. Limited research funding leads to sparse and often contradictory palliative care literature, with few studies on causal mechanisms. Purpose The purpose of this article is to explore the psychosocial, cultural and spiritual health disparities existing in palliative and end of life care with the goal of identifying future research needs. Method To determine knowledge gaps related to health disparities in psychosocial, cultural, and spiritual aspects of end of life care we draw upon recent literature from multiple databases. Discussion Although there are few data, we do know minorities make little use of hospice, often because of lack of knowledge about hospice or palliative care, family-centered cultures, and preferences for more aggressive end of life care than hospice allows. Conclusion Future research should include a search for theoretical and causal mechanisms; prospective longitudinal investigations; diverse patients, conditions, contexts, and settings; methodological diversity and rigor; and interdisciplinary, culturally sensitive interventions. PMID:23141196

  9. Palliative and end-of-life care for people living with dementia in care homes: part 2.

    PubMed

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

    2016-06-29

    This article, the second of two, provides healthcare practitioners with an overview of best practice in palliative and end-of-life care, including nutrition, hydration, oral hygiene and pain management. Communication and spiritual care are discussed, as well as care after death. Providing support and education for families is an important aspect of palliative and end-of-life care. Care home nurses should ensure that the person living with dementia is at the centre of decision making, and provide care that is inclusive of their needs and wishes. 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. PMID:27353937

  10. Difficulties of residents in training in end-of-life care. A qualitative study.

    PubMed

    Luthy, C; Cedraschi, C; Pautex, S; Rentsch, D; Piguet, V; Allaz, A F

    2009-01-01

    Residents in training are first-line physicians in hospital settings and they are in the process of developing knowledge and mastering clinical skills. They have to confront complex tasks calling upon their personal background, professional identity and relationships with the patients. We conducted a qualitative study investigating the difficulties they perceive in end-of-life care. In all, 24 consecutive residents were presented with a written query asking them to indicate the difficulties they identify in the management of patients hospitalised for end-of-life care. Their responses were submitted to content analysis. Physicians' mean age was 28 +/- 2.2 years, 37% were women, average postgraduate training duration was 2.5 +/- 1.3 years. Content analysis elicited eight categories of difficulties: ability to provide adequate explanations, understand the patients' needs, have sufficient theoretical knowledge, avoid flight, avoid false reassurance, manage provision of time, face one's limits as a physician and be able to help despite everything. Residents' responses showed that they identify the complexity of care in terminally-ill patients early in their training. Their responses pointed to the 'right distance' in-between getting involved and preserving oneself as a dimension of major importance. PMID:18996979

  11. Go Wish: a tool for end-of-life care conversations.

    PubMed

    Menkin, Elizabeth S

    2007-04-01

    The Go Wish card game is an advance care planning tool developed by Coda Alliance to help people have conversations about end-of-life care. Initially, this tool was designed as an easy, entertaining exercise for low-functioning assisted-living facility residents, their family members, and their CNA/nursing assistants (many of whom have limited English language skills.) Use of the tool can be proctored by staff or even a caregiver after minimal instruction. It turns out to be a widely applicable and inexpensive tool to help people discuss end-of-life care. The cards focus the conversations, provide important vocabulary to give voice to patients' needs and concerns, and offer a means for sharing those ideas. The Go Wish tool has developed into professionally designed and printed cards that are boxed as a game set. This paper describes the development of the Go Wish cards and reports on some of the diverse cases in which they have been useful. PMID:17472498

  12. 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 ...

  13. Equality for followers of South Asian religions in end-of-life care.

    PubMed

    Samanta, Jo

    2013-06-01

    Significant minority populations confer richness and diversity to British society. Responsive end-of-life care is a universal need that has ascended the public agenda following myriad reports of inadequate provision. Nevertheless, the potential exists for unwitting discrimination when caring for terminally ill patients on the basis of their religion or faith. Recent implementation of the Equality Act 2010, together with the government and professional initiatives, promises to positively impact upon this area of contemporary relevance and concern, although the extent to which facilitative policies can truly enhance patient care will depend upon how these are translated into care at the bedside. The contributions of health professionals will be central in meeting the challenges and seizing the opportunities for meeting the religion and faith interests of patients of South Asian descent. PMID:23166143

  14. 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. PMID:26654064

  15. A Qualitative Study of Oncologists' Approaches to End-of-Life Care

    PubMed Central

    Mack, Jennifer; Matsuyama, Robin; Lakoma, Mathew D.; Sullivan, Amy M.; Arnold, Robert M.; Weeks, Jane C.; Block, Susan D.

    2008-01-01

    Abstract Purpose To understand how oncologists provide care at the end of life, the emotions they experience in the provision of this care, and how caring for dying patients may impact job satisfaction and burnout. Participants and methods A face-to-face survey and in-depth semistructured interview of 18 academic oncologists who were asked to describe the most recent inpatient death on the medical oncology service. Physicians were asked to describe the details of the patient death, their involvement with the care of the patient, the types and sequence of their emotional reactions, and their methods of coping. Grounded theory qualitative methods were utilized in the analysis of the transcripts. Results Physicians, who viewed their physician role as encompassing both biomedical and psychosocial aspects of care, reported a clear method of communication about end-of-life (EOL) care, and an ability to positively influence patient and family coping with and acceptance of the dying process. These physicians described communication as a process, made recommendations to the patient using an individualized approach, and viewed the provision of effective EOL care as very satisfying. In contrast, participants who described primarily a biomedical role reported a more distant relationship with the patient, a sense of failure at not being able to alter the course of the disease, and an absence of collegial support. In their descriptions of communication encounters with patients and families, these physicians did not seem to feel they could impact patients' coping with and acceptance of death and made few recommendations about EOL treatment options. Conclusion Physicians' who viewed EOL care as an important role described communicating with dying patients as a process and reported increased job satisfaction. Further research is necessary to determine if educational interventions to improve physician EOL communication skills could improve physician job satisfaction and decrease

  16. Improving and validating children's nurses communication skills with standardized patients in end of life care.

    PubMed

    Kenny, Gerard; Cargil, Jamie; Hamilton, Catherine; Sales, Rachel

    2016-06-01

    Children's nurse education is experiencing increases in recruitment targets at the same time that clinical placements are decreasing. With regard to end-of-life care, it is has become a challenge to ensure that all students come into contact with a satisfactory range of experience as part of the requirement for competency at the point of registration. The aim of our study was to find out if students at the end of their course were able to use communication skills acquired in their three years of training and adapt and transfer them to a specific palliative care context even if they had never worked in that area of care. Focus groups were conducted after the simulations which explored the students' experiences of being involved in the scenarios. Four themes emerged that students identified either inhibited or enabled their communication skills, which included anxiety and fear, the need for professional props, the experience of it being real and feeling empowered. PMID:25395598

  17. 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. PMID:26380923

  18. Dignity in end-of-life care: results of a national survey of US physicians

    PubMed Central

    Antiel, Ryan M.; Curlin, Farr A.; James, Katherine M.; Sulmasy, Daniel P.; Tilburt, Jon C.

    2014-01-01

    Context Debates persist about the relevance of “dignity” as an ethical concept in US healthcare, especially in end-of-life care. Objective To describe the attitudes and beliefs regarding the usefulness and meaning of the concept of dignity and to examine judgments about a clinical scenario in which dignity might be relevant. Methods 2000 practicing U.S. physicians, from all specialties, were mailed a survey. Main measures included physician’s judgments about an end-of-life clinical scenario (criterion variable), attitudes about the concept of dignity (predictors), and their religious characteristics (predictors). Results 1032 eligible physicians (54%) responded. Nine out of ten (90%) physicians reported that dignity was relevant to their practice. After controlling for age, gender, region, and specialty, physicians who judged that the case patient had either some dignity or full dignity, and who agreed that dignity is given by a creator, were all positively associated with believing that the patient’s life was worth living [OR 10.2 (5.8–17.8), OR 20.5 (11.4–36.8), OR 4.7 (3.1–7.0), respectively]. Respondents who strongly agreed that “all living humans have the same amount of dignity” were also more likely to believe that the patient’s life was worth living [OR 1.8 (1.2–2.7)]. Religious characteristics were also associated with believing that the case patient’s life was worth living [OR 4.1 (2.4–7.2), OR 3.2 (1.6–6.3), OR 9.2 (4.3–19.5), respectively]. Conclusion US physicians view the concept of dignity as useful. Those views are associated with their judgments about common end-of-life scenarios in which dignity concepts may be relevant. PMID:22762966

  19. Organization of Nursing and Quality of Care for Veterans at the End of Life

    PubMed Central

    Kutney-Lee, Ann; Brennan, Caitlin W.; Meterko, Mark; Ersek, Mary

    2015-01-01

    Context The Veterans Health Administration (VA) has improved the quality of end-of-life (EOL) care over the past several years. Several structural and process variables are associated with better outcomes. Little is known, however, about the relationship between the organization of nursing care and EOL outcomes. Objectives To examine the association between the organization of nursing care, including the nurse work environment and nurse staffing levels, and quality of EOL care in VA acute care facilities. Methods Secondary analysis of linked data from the Bereaved Family Survey (BFS), electronic medical record, administrative data, and the VA Nursing Outcomes Database. The sample included 4908 veterans who died in one of 116 VA acute care facilities nationally between October 2010 and September 2011. Unadjusted and adjusted generalized estimating equations were used to examine associations between nursing and BFS outcomes. Results BFS respondents were 17% more likely to give an excellent overall rating of the quality of EOL care received by the veteran in facilities with better nurse work environments (P ≤ 0.05). The nurse work environment also was a significant predictor of providers listening to concerns and providing desired treatments. Nurse staffing was significantly associated with an excellent overall rating, alerting of the family before death, attention to personal care needs, and the provision of emotional support after the patient’s death. Conclusion Improvement of the nurse work environment and nurse staffing in VA acute care facilities may result in enhanced quality of care received by hospitalized veterans at the EOL. PMID:25116912

  20. 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

  1. Understanding the views of those who care for patients with cancer on advance care planning and end-of-life care.

    PubMed

    Mattes, Malcolm D; Tung, Kaity; Baum, Rachel; Parikh, Kapila; Ashamalla, Hani

    2015-12-01

    An electronic survey was used to assess the views of a diverse nationwide cohort of health care professionals regarding advance care planning and end-of-life care. A total of 645 responses were received. If diagnosed with a serious incurable illness with limited life expectancy, 97% would want to discuss their prognosis, 74% would refuse cardiopulmonary resuscitation, and 72% favored supportive/comfort care to more aggressive life-prolonging treatments. However, prognosis was thought to be discussed with only 52% of such patients, and just 5% thought doctors were either very or extremely successful at explaining advanced life-sustaining treatments to patients. Greater than 90% believed these discussions should best occur when a patient is thought to have one or more years to live and 80% thought they are best initiated in the outpatient setting. PMID:24939206

  2. The social stratification of older adults' preparations for end-of-life health care.

    PubMed

    Carr, Deborah

    2012-09-01

    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, after demographic, health, and psychological characteristics are controlled. Low rates of health-related planning among persons with low or negative assets are largely accounted for by the fact that they are less likely to execute a will, an action that triggers health-related preparations. Rates of health-related planning alone are higher among recently hospitalized persons, whereas financial planning only is more commonly done by homeowners and those with richer assets. The results suggest that economically advantaged persons engage in end-of-life planning as a two-pronged strategy entailing financial and health-related preparations. Implications for health policy, practice, and theory are discussed. PMID:22940813

  3. Care of Patients at the End of Life: Management of Nonpain Symptoms.

    PubMed

    Baralatei, Florence T; Ackermann, Richard J

    2016-08-01

    Management of nonpain symptoms can improve quality of life for patients at the end of life and their family members. Constipation is the most common nonpain symptom. It can be related to opioid therapy and/or medical conditions. After abdominal examination to detect masses or evidence of bowel obstruction and rectal examination to exclude fecal impaction, constipation should be managed with a stimulant laxative (eg, senna) or an osmotic laxative (eg, sorbitol). Dyspnea also is common, and often improves with use of a fan to blow air into the face, as well with breathing and relaxation exercises. However, many patients require titrated doses of opioids to address respiratory depression, and anxiolytics such as haloperidol may be needed to manage dyspnea-related anxiety. Oxygen typically is not effective in dyspnea management in nonhypoxemic patients at the end of life. Cough is managed with antitussives. Nausea and vomiting occur in 70% of patients in palliative care units. If no reversible etiology can be identified, dopamine antagonists and motility-enhancing drugs can be used. There are no clearly effective treatments to manage noisy respiratory secretions, but position change, decrease in fluid intake, and drugs such as scopolamine or glycopyrrolate may be effective. PMID:27490069

  4. Current State of Pain Care for Hospitalized Patients at End of Life

    PubMed Central

    Yao, Yingwei; Keenan, Gail; Al-Masalha, Fadi; Lopez, Karen Dunn; Khokar, Ashfaq; Johnson, Andrew; Ansari, Rashid; Wilkie, Diana J.

    2013-01-01

    We report findings on the current state of pain care in hospitals for end-of-life (EOL) patients using longitudinal data from eight diverse medical-surgical units located in 4 different Midwestern hospitals over 24 months. We identified 1,425 EOL care episodes, 596 (41.3%) of which had a pain diagnosis. The percentage of EOL patients with pain varied significantly across units (p<.001), and was even lower (27.7%) for those with “acute confusion.” Additionally, 30% of EOL patients had severe or significant pain at death or discharge to hospice and only 42.7% actually met the expected pain related outcome ratings. Pain often improved within 48 hours of admission (p<.005), the improvement, however, stagnated following this initial time period (p=.92). A sizable gap between pain science and clinical practice continues. PMID:22556281

  5. Reflections on using biographical approaches in end-of-life care: dignity therapy as example.

    PubMed

    Lindqvist, Olav; Threlkeld, Guinever; Street, Annette F; Tishelman, Carol

    2015-01-01

    The therapeutic potential of nonpharmacologic interventions using biographical approaches at the end of life (EoL) is being increasingly recognized, but less attention is paid to processes impeding realization of this potential. In this article, Swedish and Australian researchers reflect on and problematize experiences using one biographical approach, dignity therapy (DT), in EoL care in Sweden. We use this as an example, focusing on critical examination of the process of applying DT in practice, examining frictions experienced in recruiting participants, collecting the data, and creating a biography. We discuss issues regarding agency, which became evident in the recruitment process and choices made about participation, and the power differentials manifested in the interactive process of eliciting stories and crafting them into a final product. We also raise salient questions about how research and practice with biographical approaches in EoL care might better build on and further existing knowledge to better reflect the complexities of everyday life. PMID:25189536

  6. Impacts of care-giving and sources of support: a comparison of end-of-life and non-end-of-life caregivers in Canada.

    PubMed

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

    2016-03-01

    This is the second in a series of papers that deal with care-giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short-term, long-term and end-of-life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non-EOL caregivers (short-term and long-term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long-term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care-giving experience and the caregiver supports received, while also examining the differences in these across EOL and non-EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non-EOL caregivers. The study revealed that with respect to socio-demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non-EOL caregivers are experiencing negative impacts from their care-giving role, comparatively greater supports are needed for EOL caregivers. PMID:25727849

  7. Retrospective study of doctors' "end of life decisions" in caring for mentally handicapped people in institutions in The Netherlands.

    PubMed Central

    van Thiel, G. J.; van Delden, J. J.; de Haan, K.; Huibers, A. K.

    1997-01-01

    OBJECTIVES: To gain insight into the reasons behind and the prevalence of doctors' decisions at the end of life that might hasten a patient's death ("end of life decisions") in institutions caring for mentally handicapped people in the Netherlands, and to describe important aspects of the decisions making process. DESIGN: Survey of random sample of doctors caring for mentally handicapped people by means of self completed questionnaires and structured interviews. SUBJECTS: 89 of the 101 selected doctors completed the questionnaire. 67 doctors had taken an end of life decision and were interviewed about their most recent case. MAIN OUTCOME MEASURES: Prevalence of end of life decisions; types of decisions; characteristics of patients; reasons why the decision was taken; and the decision making process. RESULTS: The 89 doctors reported 222 deaths for 1995. An end of life decision was taken in 97 cases (44%); in 75 the decision was to withdraw or withhold treatment, and in 22 it was to relieve pain or symptoms with opiates in dosages that may have shortened life. In the 67 most recent cases with an end of life decision the patients were mostly incompetent (63) and under 65 years old (51). Only two patients explicitly asked to die, but in 23 cases there had been some communication with the patient. In 60 cases the doctors discussed the decision with nursing staff and in 46 with a colleague. CONCLUSIONS: End of life decisions are an important aspect of the institutionalised care of mentally handicapped people. The proportion of such decisions in the total number of deaths is similar to that in other specialties. However, the discussion of such decisions is less open in the care of mental handicap than in other specialties. Because of distinctive features of care in this specialty an open debate about end of life decisions should not be postponed. PMID:9240047

  8. End-of-life care in the intensive care unit: where are we now?

    PubMed

    Nelson, J E; Danis, M

    2001-02-01

    A growing body of evidence and experience has effaced what were once thought to be clear distinctions between "critical illness" and "terminal illness" and has exposed the problems of postponing palliative care for intensive care patients until death is obviously imminent. Integration of palliative care as a component of comprehensive intensive care is now seen as more appropriate for all critically ill patients, including those pursuing aggressive treatments to prolong life. At present, however, data on which to base practice in this integrated model remain insufficient, and forces of the healthcare economy and other factors may constrain its application. The purpose of this article is to map where we are now in seeking to improve palliative care in the intensive care unit. We review existing evidence, which suggests that both symptom management and communication about preferences and goals of care warrant improvement and that prevailing practices for limitation of life-sustaining treatments are inconsistent and possibly irrational. We also address the need for assessment tools for research and quality improvement. We discuss recent initiatives and ongoing obstacles. Finally, we identify areas for further exploration and suggest guiding principles. PMID:11228566

  9. 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. PMID:11441626

  10. 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. PMID:15682955

  11. Dying on the Streets: Homeless Persons’ Concerns and Desires about End of Life Care

    PubMed Central

    Bartels, Dianne M.; Ratner, Edward R.; Alderton, Lucy; Hudson, Brenda; Ahluwalia, Jasjit S.

    2007-01-01

    Background There is little understanding about the experiences and preferences at the end of life (EOL) for people from unique cultural and socioeconomic backgrounds. Homeless individuals are extreme examples of these overlooked populations; they have the greatest risk of death, encounter barriers to health care, and lack the resources and relationships assumed necessary for appropriate EOL care. Exploring their desires and concerns will provide insight for the care of this vulnerable and disenfranchised population, as well as others who are underserved. Objective Explore the concerns and desires for EOL care among homeless persons. Design Qualitative study utilizing focus groups. Participants Fifty-three homeless persons recruited from agencies providing homeless services. Measurements In-depth interviews, which were audiotaped and transcribed. Results We present 3 domains encompassing 11 themes arising from our investigation, some of which are previously unreported. Homeless persons worried about dying and EOL care; had frequent encounters with death; voiced many unique fears, such as dying anonymously and undiscovered; favored EOL documentation, such as advance directives; and demonstrated ambivalence towards contacting family. They also spoke of barriers to EOL care and shared interventions to improve dying among the very poor and estranged. Conclusions Homeless persons have significant personal experience and feelings about death, dying, and EOL care, much of which is different from those previously described in the EOL literature about other populations. These findings have implications not only for homeless persons, but for others who are poor and disenfranchised. PMID:17372789

  12. 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. PMID:24259404

  13. 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. PMID:22885966

  14. 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

  15. 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

  16. The Quality of Care Provided to Hospitalized Patients at the End of Life

    PubMed Central

    Walling, Anne M.; Asch, Steven M.; Lorenz, Karl A.; Roth, Carol P.; Barry, Tod; Kahn, Katherine L.; Wenger, Neil S.

    2010-01-01

    Background Patients in American hospitals receive intensive medical treatments. However, when lifesaving treatments are unsuccessful, patients often die in the hospital with distressing symptoms while receiving burdensome care. Systematic measurement of the quality of care planning and symptom palliation is needed. Methods Medical records were abstracted using sixteen Assessing Care of Vulnerable Elders quality indicators within the domains of end of life care and pain management designed to measure the quality of the dying experience for adult decedents hospitalized for at least 3 days between April 2005 and April 2006 (n=496) at a university medical center recognized for providing intensive care for the seriously ill. Results Over half of the patients (mean age 62, 47% female), were admitted to the hospital with end stage disease and 28% were age 75 or older. One third of the patients required extubation from mechanical ventilation prior to death and 15% died while receiving CPR. Overall, patients received recommended care for 70% of applicable indicators (range 25%–100%). Goals of care were addressed in a timely fashion for patients admitted to the ICU approximately half of the time, while pain assessments (94%) and treatments for pain (95%) and dyspnea (87%) were performed with fidelity. Follow-up for distressing symptoms was performed less well than initial assessment and 29% of patients extubated in anticipation of death had documented dyspnea assessments. Conclusions A practical, chart-based assessment identified discrete deficiencies in care planning and symptom palliation that can be targeted to improve care for patients dying in the hospital. PMID:20585072

  17. The effect of rapid response teams on end-of-life care: A retrospective chart review

    PubMed Central

    Tam, Benjamin; Salib, Mary; Fox-Robichaud, Alison

    2014-01-01

    BACKGROUND: A subset of critically ill patients have end-of-life (EOL) goals that are unclear. Rapid response teams (RRTs) may aid in the identification of these patients and the delivery of their EOL care. OBJECTIVES: To characterize the impact of RRT discussion on EOL care, and to examine how a preprinted order (PPO) set for EOL care influenced EOL discussions and outcomes. METHODS: A single-centre retrospective chart review of all RRT calls (January 2009 to December 2010) was performed. The effect of RRT EOL discussions and the effect of a hospital-wide PPO set on EOL care was examined. Charts were from the Ontario Ministry of Health and Long-Term Care Critical Care Information Systemic database, and were interrogated by two reviewers. RESULTS: In patients whose EOL status changed following RRT EOL discussion, there were fewer intensive care unit (ICU) transfers (8.4% versus 17%; P<0.001), decreased ICU length of stay (5.8 days versus 20 days; P=0.08), increased palliative care consultations (34% versus 5.3%; P<0.001) and an increased proportion who died within 24 h of consultation (25% versus 8.3%; P<0.001). More patients experienced a change in EOL status following the introduction of an EOL PPO, from 20% (before) to 31% (after) (P<0.05). CONCLUSIONS: A change in EOL status following RRT-led EOL discussion was associated with reduced ICU transfers and enhanced access to palliative care services. Further study is required to identify and deconstruct barriers impairing timely and appropriate EOL discussions. PMID:25299222

  18. Accuracy of a Decision Aid for Advance Care Planning: Simulated End-of-Life Decision Making

    PubMed Central

    Levi, Benjamin H.; Heverley, Steven R.; Green, Michael J.

    2013-01-01

    Purpose Advance directives have been criticized for failing to help physicians make decisions consistent with patients’ wishes. This pilot study sought to determine if an interactive, computer-based decision aid that generates an advance directive can help physicians accurately translate patients’ wishes into treatment decisions. Methods We recruited 19 patient-participants who had each previously created an advance directive using a computer-based decision aid, and 14 physicians who had no prior knowledge of the patient-participants. For each advance directive, three physicians were randomly assigned to review the advance directive and make five to six treatment decisions for each of six (potentially) end-of-life clinical scenarios. From the three individual physicians’ responses, a “consensus physician response” was generated for each treatment decision (total decisions = 32). This consensus response was shared with the patient whose advance directive had been reviewed, and she/he was then asked to indicate how well the physician translated his/her wishes into clinical decisions. Results Patient-participants agreed with the consensus physician responses 84 percent (508/608) of the time, including 82 percent agreement on whether to provide mechanical ventilation, and 75 percent on decisions about cardiopulmonary resuscitation (CPR). Across the six vignettes, patient-participants’ rating of how well physicians translated their advance directive into medical decisions was 8.4 (range = 6.5–10, where 1 = extremely poorly, and 10 = extremely well). Physicians’ overall rating of their confidence at accurately translating patients’ wishes into clinical decisions was 7.8 (range = 6.1–9.3, 1 = not at all confident, 10 = extremely confident). Conclusion For simulated cases, a computer-based decision aid for advance care planning can help physicians more confidently make end-of-life decisions that patients will endorse. PMID:22167985

  19. End of Life Care for Patients Dying of Stroke: A Comparative Registry Study of Stroke and Cancer

    PubMed Central

    Eriksson, Heléne; Milberg, Anna; Hjelm, Katarina; Friedrichsen, Maria

    2016-01-01

    Background Although stroke is a significant public health challenge and the need for palliative care has been emphasized for these patients, there is limited data on end-of-life care for patients dying from stroke. Objective To study the end-of-life care during the last week of life for patients who had died of stroke in terms of registered symptom, symptom management, and communication, in comparison with patients who had died of cancer. Design This study is a retrospective, comparative registry study. Methods A retrospective comparative registry study was performed using data from a Swedish national quality register for end-of-life care based on WHO`s definition of Palliative care. Data from 1626 patients who had died of stroke were compared with data from 1626 patients who had died of cancer. Binary logistic analyses were used to calculate odds ratios, with 95% CI. Results Compared to patients who was dying of cancer, the patients who was dying of stroke had a significantly higher prevalence of having death rattles registered, but a significantly lower prevalence of, nausea, confusion, dyspnea, anxiety, and pain. In addition, the stroke group had significantly lower odds ratios for health care staff not to know whether all these six symptoms were present or not. Patients who was dying of stroke had significantly lower odds ratio of having informative communication from a physician about the transition to end-of-life care and of their family members being offered bereavement follow-up. Conclusions The results indicate on differences in end-of-life care between patients dying of stroke and those dying from cancer. To improve the end-of-life care in clinical practice and ensure it has consistent quality, irrespective of diagnosis, education and implementation of palliative care principles are necessary. PMID:26845149

  20. Palliative care at the end-of-life in glioma patients.

    PubMed

    Koekkoek, Johan A F; Chang, Susan; Taphoorn, Martin J B

    2016-01-01

    The end-of-life (EOL) phase of patients with a glioma starts when symptom prevalence increases and antitumor treatment is no longer effective. During the EOL phase, care is primarily aimed at reducing symptom burden while maintaining quality of life as long as possible without inappropriate prolongation of life. Palliative care during the EOL phase also involves complex medical decisions for the prevention and relief of suffering. We discuss the prevalence and treatment of the most common EOL symptoms, decision making in the EOL phase, the organization of EOL care, and the role of the patient's caregiver. Treating disease-specific symptoms, such as impaired consciousness, seizures, focal neurologic deficits and cognitive disturbances, is a major concern during the EOL phase, as these symptoms may interfere with EOL decision making. Advance care planning is aimed at reaching consensus about possible EOL decisions between all participants, respecting the values of patients and their informal caregivers. In order to prevent the possibility that the patient becomes incompetent to make informed decisions, we recommend initiating EOL conversations at a relatively early stage in the disease course. PMID:26948363

  1. Association of Experience with Illness and End-of-life Care with Advance Care Planning in Older Adults

    PubMed Central

    Amjad, Halima; Towle, Virginia; Fried, Terri

    2014-01-01

    Objectives To examine whether experiences with illness and end-of-life care are associated with increased readiness to participate in advance care planning (ACP). Design Observational cohort study. Setting Community. Participants Persons age ≥ 60 recruited from physician offices and a senior center. Measurements Participants were asked about personal experience with major illness or surgery and experience with others’ end-of-life care, including whether they had made a medical decision for someone dying, knew someone who had a bad death due to too much/too little medical care, or experienced the death of a loved one who made end-of-life wishes known. Stages of change were assessed for specific ACP behaviors: completion of living will and healthcare proxy, communication with loved ones regarding life-sustaining treatments and quantity versus quality of life, and communication with physicians about these same topics. Stages of change included precontemplation, contemplation, preparation and action/maintenance corresponding to whether the participant was not ready to complete the behavior, was considering participation in the next six months, was planning participation within thirty days, or had already participated. Results Of 304 participants, 84% had one or more personal experiences or experience with others. Personal experiences were not associated with increased readiness for most ACP behaviors. In contrast, having one or more experiences with others was associated with increased readiness to complete a living will and healthcare proxy, discuss life-sustaining treatment with loved ones and discuss quantity versus quality of life with loved ones and with physicians. Conclusion Older individuals who have experience with end-of-life care for others demonstrate increased readiness to participate in ACP. Discussions with older patients regarding these experiences may be a useful tool in promoting ACP. PMID:24934237

  2. Strengthening end-of-life care for African-American patients and families through education and community outreach.

    PubMed

    Holmstrom, Eric C

    2013-01-01

    Care for African-American patients and families at the end of life presents a unique challenge to healthcare providers. Providers need to be culturally and historically competent to effectively serve persons with a long history of distrust of the white-dominated healthcare system. Effective means of addressing outreach, access, and service issues for this community need to be twofold. They must focus on those who deliver the care and those who receive it. This twofold focus inspired the education and community outreach that were key elements in this ACE Project. The resources of the Duke Institute on Care at the End of Life (ICEOL), particularly their APPEAL curriculum, was key to strengthening end-of-life care in the internal culture of Abington Memorial Hospital and the community they serve. PMID:23977786

  3. Intensive Care Unit Cultures and End-of-Life Decision Making

    PubMed Central

    Baggs, Judith Gedney; Norton, Sally A.; Schmitt, Madeline H.; Dombeck, Mary T.; Sellers, Craig R.; Quinn, Jill R.

    2007-01-01

    Purpose: Prior researchers studying end-of-life decision making (EOLDM) in intensive care units (ICUs) often have collected data retrospectively and aggregated data across units. There has been little research, however, about how cultures differ among ICUs. This research was designed to study limitation of treatment decision making in real time, to evaluate similarities and differences in the cultural contexts of four ICUs and the relationship of those contexts to EOLDM. Materials and Methods: Ethnographic field work took place in four adult ICUs in a tertiary care hospital. Participants were health care providers (e.g., physicians, nurses, and social workers), patients and their family members. Participant observation and interviews took place 5 days/week for 7 months in each unit. Results: The ICUs were not monolithic. There were similarities, but important differences in EOLDM were identified in formal and informal rules, meaning and uses of technology, physician roles and relationships, processes such as unit rounds, and timing of initiation of EOLDM. Conclusions: As interventions to improve EOLDM are developed, it will be important to understand how they may interact with unit cultures. Attempting to develop one intervention to be used in all ICUs is unlikely to be successful. PMID:17548028

  4. Using modeling to inform patient-centered care choices at the end of life

    PubMed Central

    Hajizadeh, Negin; Crothers, Kristina; Braithwaite, R Scott

    2014-01-01

    Aim Advance directives are often under-informed due to a lack of disease-specific prognostic information. Without well-informed advance directives patients may receive default care that is incongruent with their preferences. We aimed to further inform advance care planning in patients with severe chronic obstructive pulmonary disease by estimating outcomes with alternative advance directives. Methods We designed a Markov microsimulation model estimating outcomes for patients choosing between the Full Code advance directive (permitting invasive mechanical ventilation), and the Do Not Intubate directive (only permitting noninvasive ventilation). Results Our model estimates Full Code patients have marginally increased one-year survival after admission for severe respiratory failure, but are more likely to be residing in a nursing home and have frequent rehospitalizations for respiratory failure. Conclusion Patients with severe chronic obstructive pulmonary disease may consider these potential tradeoffs between survival, rehospitalizations and institutionalization when making informed advance care plans and end-of-life decisions. We highlight outcomes research needs for variables most influential to the model’s outcomes, including the risk of complications of invasive mechanical ventilation and failing noninvasive mechanical ventilation. PMID:24236746

  5. 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. PMID:23328948

  6. [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. PMID:27084441

  7. 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

  8. [Continuous sedation until death. A French way for the end-of-life care?].

    PubMed

    Zittoun, Robert

    2016-01-01

    Continuous sedation until death (CSUD) is a practice which has developed recently in several countries, appearing more acceptable than euthanasia and medically assisted suicide, since more close to a "natural death". The French parliament has just adopted a law which stipulates CSUD on request of the patient in a definite number of circumstances, especially in incurable diseases near to the terminal stage with suffering refractory to treatments. Thus France has adopted a unique international position for the end-of-life care. However several ethical problems raised by CSUD, which corresponds to a psycho-social death preceding the biological one, have been raised in the literature. The legitimacy of CSUD, especially if sedation is deep and not proportional to the degree of suffering, or if it is performed in case of a purely existential distress, is a matter of discussion. The primacy allocated to autonomy is questionable for the more vulnerable patients, who deserve mainly a social solidarity. The double-effect principle is replaced actually in CSUD by a co-intention both to relieve suffering and meanwhile eventually to hasten death, especially when stopping nutrition and hydration. CSUD is thus located in a grey zone between palliative care and euthanasia. PMID:27217260

  9. 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…

  10. Using a LISTSERV™ to develop a community of practice in end-of-life, hospice, and palliative care social work.

    PubMed

    Murty, Susan A; Gilmore, Kaleigh; Richards, Karen A; Altilio, Terry

    2012-01-01

    An e-mail discussion group (SW-PALL-EOL) connects the growing number of social workers interested in palliative and end-of-life care. The article discusses the concept of a technology supported "Community of Practice." Using content analysis, the article shows empirically how this electronic discussion group has contributed to the growth and expansion of a Community of Practice dedicated to improving palliative and end-of-life care among social workers. Examples are provided of the topics posted by subscribers and the guidance provided by the group's facilitators. Comments indicate satisfaction with the electronic discussion group. PMID:22424385

  11. End-of-life care at group homes for patients with dementia in Japan. Findings from an analysis of policy-related differences.

    PubMed

    Hirakawa, Yoshihisa; Masuda, Yuichiro; Uemura, Kazumasa; Kuzuya, Masafumi; Kimata, Takaya; Iguchi, Akihisa

    2006-01-01

    In Japan, the number of group homes for patients with dementia (GHs) has been increasing in recent years. A growing number of elderly people now prefer to spend their final years in group homes or other long-term care facilities, a choice that their families support. The aim of this nationwide study is to clarify the current end-of-life care policies and practices of GHs. The subjects were 3701 managing directors of GHs. Data were collected through mailed, anonymous, self-reported questionnaires in 2003. The content of the questionnaires included: (1) general characteristics of the GH, (2) end-of-life care policies and experiences, (3) available end-of-life care services at the GH, (4) staff education concerning end-of-life care, and (5) types of information provided to users and families. The response rate was 45.6%. Many GHs had implemented progressive policies for end-of-life care. GHs with progressive policies for end-of-life care were found to have different backgrounds than those with regressive policies. Only a few GHs provided end-of-life care education for their staff. GHs with progressive policies for end-of-life care tended to have the following characteristics: availability of medical intervention within and outside of the GH, self-contained physical plant and staff education about end-of-life care. Further research is needed to determine the most effective end-of-life care systems for GHs. PMID:16188331

  12. 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

  13. 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

  14. 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

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

    PubMed Central

    des Ordons, Amanda Roze; 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

  16. Sedatives and Analgesics Given to Infants in Neonatal Intensive Care Units at the End of Life

    PubMed Central

    Zimmerman, Kanecia O.; Hornik, Christoph P.; Ku, Lawrence; Watt, Kevin; Laughon, Matthew M.; Bidegain, Margarita; Clark, Reese H.; Smith, P. Brian

    2015-01-01

    Objective To describe the administration of sedatives and analgesics at the end of life in a large cohort of infants in North American neonatal intensive care units (NICUs). Study design Data on mortality and sedative and analgesic administration were obtained from infants who died from 1997–2012 in 348 NICUs managed by the Pediatrix Medical Group. Sedatives and analgesics of interest included opioids (fentanyl, methadone, morphine), benzodiazepines (clonazepam, diazepam, lorazepam, midazolam), central alpha-2 agonists (clonidine, dexmedetomidine), ketamine, and pentobarbital. We used multivariable logistic regression to evaluate the association between administration of these drugs on the day of death and infant demographics and illness severity. Results We identified 19,726 infants who died. Of these, 6188 (31%) received a sedative or analgesic on the day of death; opioids were most frequently administered, 5366/19,726 (27%). Administration of opioids and benzodiazepines increased during the study period, from 16/283 (6%) for both in 1997 to 523/1465 (36%) and 295/1465 (20%) in 2012, respectively. Increasing gestational age, increasing postnatal age, invasive procedure within 2 days of death, more recent year of death, mechanical ventilation, inotropic support, and antibiotics on the day of death were associated with exposure to sedatives or analgesics. Conclusions Administration of sedatives and analgesics increased over time. Infants of older gestational age and those more critically ill were more likely to receive these drugs on the day of death. These findings suggest that drug administration may be driven by severity of illness. PMID:26012893

  17. Improving end of life care: an information systems approach to reducing medical errors.

    PubMed

    Tamang, S; Kopec, D; Shagas, G; Levy, K

    2005-01-01

    -known precedent cases. The prototype uses the opensource CASPIAN shell developed by the University of Aberystwyth, Wales and is available by anonymous FTP. We will discuss and analyze the preliminary results we have obtained using this CBR tool. Our research suggests that automated information systems can be used to improve the quality of care at the end of life and disseminate expert level 'know how' to palliative care clinicians. We will present how our CBR prototype can be successfully deployed, capable of securely transferring information using a Secure File Transfer Protocol (SFTP) and using a JAVA CBR engine. PMID:15923765

  18. 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

  19. 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…

  20. 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.…

  1. 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

    ... Request: NEW. Need and Use of Information Collection: The NINR End-of-Life Science Palliative Care (EOL PC) Needs Assessment: Funding Source Questionnaire will obtain information on funding sources of EOL PC... participants are authors of publicly-available EOL PC research studies published between 1997-2010 for whom...

  2. 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. PMID:25162767

  3. Does facilitated Advance Care Planning reduce the costs of care near the end of life? Systematic review and ethical considerations

    PubMed Central

    Klingler, Corinna; in der Schmitten, Jürgen; Marckmann, Georg

    2015-01-01

    Background: While there is increasing evidence that Advance Care Planning has the potential to strengthen patient autonomy and improve quality of care near the end of life, it remains unclear whether it could also reduce net costs of care. Aim: This study aims to describe the cost implications of Advance Care Planning programmes and discusses ethical conflicts arising in this context. Design: We conducted a systematic review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. Data sources: We systematically searched the databases PubMed, NHS EED, EURONHEED, Cochrane Library and EconLit. We included empirical studies (no limitation to study type) that investigated the cost implications of Advance Care Planning programmes involving professionally facilitated end-of-life discussions. Results and discussion: Seven studies met our inclusion criteria. Four of them used a randomised controlled design, one used a before-after design and two were observational studies. Six studies found reductions in costs of care ranging from USD1041 to USD64,827 per patient, depending on the study period and the cost measurement. One study detected no differences in costs. Studies varied considerably regarding the Advance Care Planning intervention, patient selection and costs measured which may explain some of the variations in findings. Normative appraisal: Looking at the impact of Advance Care Planning on costs raises delicate ethical issues. Given the increasing pressure to reduce expenditures, there may be concerns that cost considerations could unduly influence the sensitive communication process, thus jeopardising patient autonomy. Safeguards are proposed to reduce these risks. Conclusion: The limited data indicate net cost savings may be realised with Advance Care Planning. Methodologically robust trials with clearly defined Advance Care Planning interventions are needed to make the costs and returns of Advance Care Planning transparent. PMID

  4. 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,…

  5. 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)

  6. Pathways From Religion to Advance Care Planning: Beliefs About Control Over Length of Life and End-of-Life Values

    PubMed Central

    Garrido, Melissa M.

    2013-01-01

    Purpose of the Study: To evaluate the extent to which religious affiliation and self-identified religious importance affect advance care planning (ACP) via beliefs about control over life length and end-of-life values. Design and Methods: Three hundred and five adults aged 55 and older from diverse racial and socioeconomic groups seeking outpatient care in New Jersey were surveyed. Measures included discussion of end-of-life preferences; living will (LW) completion; durable power of attorney for healthcare (DPAHC) appointment; religious affiliation; importance of religion; and beliefs about who/what controls life length, end-of-life values, health status, and sociodemographics. Results: Of the sample, 68.9% had an informal discussion and 46.2% both discussed their preferences and did formal ACP (LW and/or DPAHC). Conservative Protestants and those placing great importance on religion/spirituality had a lower likelihood of ACP. These associations were largely accounted for by beliefs about God’s controlling life length and values for using all available treatments. Implications: Beliefs and values about control account for relationships between religiosity and ACP. Beliefs and some values differ by religious affiliation. As such, congregations may be one nonclinical setting in which ACP discussions could be held, as individuals with similar attitudes toward the end of life could discuss their treatment preferences with those who share their views. PMID:23161430

  7. Role and Involvement of Life End Information Forum Physicians in Euthanasia and Other End-of-Life Care Decisions in Flanders, Belgium

    PubMed Central

    Van Wesemael, Yanna; Cohen, Joachim; Onwuteaka-Philipsen, Bregje D; Bilsen, Johan; Distelmans, Wim; Deliens, Luc

    2009-01-01

    Objective To describe role and involvement of Life End Information Forum (LEIF) physicians in end-of-life care decisions and euthanasia in Flanders. Study Design All 132 LEIF physicians in Belgium received a questionnaire inquiring about their activities in the past year, and their end-of-life care training and experience. Principal Findings Response rate was 75 percent. Most respondents followed substantive training in end-of-life care. In 1 year, LEIF physicians were contacted 612 times for consultations in end-of-life decisions, of which 355 concerned euthanasia requests eventually resulting in 221 euthanasia cases. LEIF physicians also gave information about various end-of-life issues (including palliative care) to patients and colleagues. Conclusions LEIF physicians provide a forum for information and advice for physicians and patients. A similar health service providing support to physicians for all end-of-life decisions could also be beneficial for countries without a euthanasia law. PMID:19780854

  8. 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

  9. [Three Elderly Female Patients Who Experienced Self-Recovery during End-of-Life Care at Home].

    PubMed

    Ohara, Hiro; Sato, Mutsuko

    2015-12-01

    Recently, after completing hospital treatment, 3 elderly female patients were introduced to our home care department for end-of-life care at home. However, these patients recovered almost by themselves and now spend quiet days. From now on, women became the era they live alone in the statistics on the elderly. On the basis of these 3 cases, it is suggested that elderly female patients have the capacity to overcome conditions such as infectious diseases and digestive system disorders. PMID:26809415

  10. Self-care of physicians caring for patients at the end of life: "Being connected... a key to my survival".

    PubMed

    Kearney, Michael K; Weininger, Radhule B; Vachon, Mary L S; Harrison, Richard L; Mount, Balfour M

    2009-03-18

    Physicians providing end-of-life care are subject to a variety of stresses that may lead to burnout and compassion fatigue at both individual and team levels. Through the story of an oncologist, we discuss the prodromal symptoms and signs leading to burnout and compassion fatigue and present the evidence for prevention. We define and discuss factors that contribute to burnout and compassion fatigue and consider factors that may mitigate burnout. We explore the practice of empathy and discuss an approach for physicians to maximize wellness through self-awareness in the setting of caring for patients with end-stage illness. Finally, we discuss some practical applications of self-care in the workplace. PMID:19293416

  11. Survey on death and dying in Hong Kong: attitudes, beliefs, and preferred end-of-life care.

    PubMed

    Mjelde-Mossey, Lee Ann; Chan, Cecilia L W

    2007-01-01

    Social Workers in end-of-life and palliative care have a particular opportunity to ease the dying process by providing culturally appropriate services to the dying and their families. In today's multicultural social environment, with an ever-increasing immigrant population, social workers are challenged to be knowledgeable about diverse cultures. Recently, a forum of health care professionals and social workers in Hong Kong conducted a survey of the general population to assess death and dying attitudes, beliefs, and preferences for end-of-life care. Four-hundred-thirty Hong Kong Chinese participated in a telephone interview. Responses were compared by gender. The survey results not only contribute to an understanding of Hong Kong Chinese, but can inform social workers who practice with Chinese immigrants to the United States. PMID:17804347

  12. Quality of end-of-life cancer care in Canada: a retrospective four-province study using administrative health care data

    PubMed Central

    Barbera, L.; Seow, H.; Sutradhar, R.; Chu, A.; Burge, F.; Fassbender, K.; McGrail, K.; Lawson, B.; Liu, Y.; Pataky, R.; Potapov, A.

    2015-01-01

    Background The quality of data comparing care at the end of life (eol) in cancer patients across Canada is poor. This project used identical cohorts and definitions to evaluate quality indicators for eol care in British Columbia, Alberta, Ontario, and Nova Scotia. Methods This retrospective cohort study of cancer decedents during fiscal years 2004–2009 used administrative health care data to examine health service quality indicators commonly used and previously identified as important to quality eol care: emergency department use, hospitalizations, intensive care unit admissions, chemotherapy, physician house calls, and home care visits near the eol, as well as death in hospital. Crude and standardized rates were calculated. In each province, two separate multivariable logistic regression models examined factors associated with receiving aggressive or supportive care. Results Overall, among the identified 200,285 cancer patients who died of their disease, 54% died in a hospital, with British Columbia having the lowest standardized rate of such deaths (50.2%). Emergency department use at eol ranged from 30.7% in Nova Scotia to 47.9% in Ontario. Of all patients, 8.7% received aggressive care (similar across all provinces), and 46.3% received supportive care (range: 41.2% in Nova Scotia to 61.8% in British Columbia). Lower neighbourhood income was consistently associated with a decreased likelihood of supportive care receipt. Interpretation We successfully used administrative health care data from four Canadian provinces to create identical cohorts with commonly defined indicators. This work is an important step toward maturing the field of eol care in Canada. Future work in this arena would be facilitated by national-level data-sharing arrangements. PMID:26628867

  13. Cardiac Implantable Electronic Devices and End-of-Life Care: An Australian Perspective.

    PubMed

    Alhammad, Nasser J; O'Donnell, Mark; O'Donnell, David; Mariani, Justin A; Gould, Paul A; McGavigan, Andrew D

    2016-08-01

    Cardiac implantable electronic devices (pacemakers and defibrillators) are increasingly common in modern cardiology practice, and health professionals from a variety of specialties will encounter patients with such devices on a frequent basis. This article will focus on the subset of patients who may request, or be appropriate for, device deactivation and discuss the issues surrounding end-of-life decisions, along with the ethical and legal implications of device deactivation. PMID:27320854

  14. Preferences for professional versus informal care at end of life amongst African-American drug users with HIV/AIDS.

    PubMed

    Mitchell, Mary M; Robinson, Allysha C; Nguyen, Trang Q; Smith, Thomas J; Knowlton, Amy R

    2015-01-01

    With the advent of antiretroviral therapies, persons living with HIV/AIDS (PLHIVs) are living longer but with increased impairment and care needs. The purpose of this study was to assess whether a vulnerable population of PLHIVs preferred informal versus professional care when unable to care for themselves, and individual and support network factors associated with preference for informal care. The findings have potential implications for facilitating the population's informal care at end of life. Data were from the BEACON study, which examined social factors associated with health outcomes among former or current drug-using PLHIVs in Baltimore, MD. Structural equation modeling was used to identify individual and support network characteristics associated with PLHIVs' preference for informal (family or friends) compared to professional care. The structural equation model indicated preference for informal care was associated with female sex, greater informal care receipt, reporting one's main partner (i.e., boy/girlfriend or spouse) as the primary source of informal care, and a support network comprised greater numbers of female kin and persons supportive of the participant's HIV treatment adherence. Not asking for needed help to avoid owing favors was associated with preferring professional care. Findings suggest that interventions to promote informal end of life care should bolster supportive others' resources and skills for care provision and treatment adherence support, and should address perceived norms of reciprocity. Such intervention will help ensure community caregiving in a population with high needs for long-term care. PMID:25196174

  15. Care of Patients at the End of Life: Advance Care Planning.

    PubMed

    Ackermann, Richard J

    2016-08-01

    Advance directives are legal documents that give instructions about how to provide care when patients develop life-threatening illnesses and can no longer communicate their wishes. Two types of documents are widely used-a living will and a durable power of attorney for health care. Most states also authorize physician orders for life-sustaining treatment. Physicians should encourage patients, particularly those with severe chronic or terminal conditions, to prepare advance directives. Medicare now reimburses billing codes for advance care consultations. Directions regarding cardiopulmonary resuscitation and artificial ventilation often are included in advance care plans, and use of artificial nutrition and hydration (ANH) also should be addressed, particularly for patients with advanced dementia. Evidence shows that in such patients, ANH does not prolong survival, increase comfort, or improve quality of life. Given the lack of benefit, physicians should recommend against use of ANH for patients with dementia. Finally, physicians should encourage use of hospice services by patients whose life expectancy is 6 months or less. Although Medicare and most other health care insurers cover hospice care, and despite evidence that patient and family satisfaction increase when hospice services are used, many patients do not use these services. PMID:27490070

  16. 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…

  17. The language of sedation in end-of-life care: The ethical reasoning of care providers in three countries.

    PubMed

    Seale, Clive; Raus, Kasper; Bruinsma, Sophie; van der Heide, Agnes; Sterckx, Sigrid; Mortier, Freddy; Payne, Sheila; Mathers, Nigel; Rietjens, Judith

    2015-07-01

    The application of ethically controversial medical procedures may differ from one place to another. Drawing on a keyword and text-mining analysis of 156 interviews with doctors and nurses involved in end-of-life care ('care providers'), differences between countries in care providers' ethical rationales for the use of sedation are reported. In the United Kingdom, an emphasis on titrating doses proportionately against symptoms is more likely, maintaining consciousness where possible. The potential harms of sedation are perceived to be the potential hastening of social as well as biological death. In Belgium and the Netherlands, although there is concern to distinguish the practice from euthanasia, rapid inducement of deep unconsciousness is more acceptable to care providers. This is often perceived to be a proportionate response to unbearable suffering in a context where there is also greater pressure to hasten dying from relatives and others. This means that sedation is more likely to be organised like euthanasia, as the end 'moment' is reached, and family farewells are organised before the patient is made unconscious for ever. Medical and nursing practices are partly responses to factors outside the place of care, such as legislation and public sentiment. Dutch guidelines for sedation largely tally with the practices prevalent in the Netherlands and Belgium, in contrast with those produced by the more international European Association for Palliative Care whose authors describe an ethical framework closer to that reportedly used by UK care providers. PMID:25389235

  18. End-of-life care in the intensive care unit: Report from the Task Force of World Federation of Societies of Intensive and Critical Care Medicine.

    PubMed

    Myburgh, John; Abillama, Fayez; Chiumello, Davide; Dobb, Geoff; Jacobe, Stephen; Kleinpell, Ruth; Koh, Younsuk; Martin, Claudio; Michalsen, Andej; Pelosi, Paolo; Torra, Lluis Blanch; Vincent, Jean-Louis; Yeager, Susan; Zimmerman, Janice

    2016-08-01

    End-of-life care in the intensive care unit (ICU) was identified as an objective in a series of Task Forces developed by the World Federation of Societies of Intensive and Critical Care Medicine Council in 2014. The objective was to develop a generic statement about current knowledge and to identify challenges relevant to the global community that may inform regional and local initiatives. An updated summary of published statements on end-of-life care in the ICU from national Societies is presented, highlighting commonalities and differences within and between international regions. The complexity of end-of-life care in the ICU, particularly relating to withholding and withdrawing life-sustaining treatment while ensuring the alleviation of suffering, within different ethical and cultural environments is recognized. Although no single statement can therefore be regarded as a criterion standard applicable to all countries and societies, the World Federation of Societies of Intensive and Critical Care Medicine endorses and encourages the role of Member Societies to lead the debate regarding end-of-life care in the ICU within each country and to take a leading role in developing national guidelines and recommendations within each country. PMID:27288625

  19. End-of-Life Treatment Preferences: A Key to Reducing Ethnic/Racial Disparities in Advance Care Planning?

    PubMed Central

    Garrido, Melissa M.; Harrington, Shannon T.; Prigerson, Holly G.

    2014-01-01

    Background This study sought to identify targets for interventions to reduce end-of-life care disparities among patients with advanced cancer. To do this, we evaluated the degree to which end-of-life care values and preferences are associated with advance care planning within racial/ethnic minority groups. Methods The Coping with Cancer study recruited patients with advanced cancer from outpatient clinics in five states from 2002-2008. We examined rates of one type of advance care planning, do not resuscitate [DNR] orders, reported at baseline interviews by 606 patients. Bivariate tests determined associations among DNR order completion, religious values, and treatment preferences within racial/ethnic groups. Results Non-Latino White patients were significantly more likely to have a DNR order (45%) than Black (25%) and Latino (20%) patients (p <.001). Preferences against specific life-prolonging treatments (e.g. chemotherapy, ventilation) were the only factor significantly associated with higher DNR order likelihood in each group, with non-Latino White patients more likely than Latino or Black patients to express preferences against life-prolonging care (e.g. 26% of non-Latino White, 46% of Black, and 41% of Latino patients wanted a feeding tube if it would extend life for one more day, p<.001). Conclusions Preferences against life-prolonging care differ dramatically by race/ethnicity, but they are uniformly significantly associated with DNR order completion rates across racial/ethnic groups of patients with advanced cancer. Advance care planning interventions that target preferences associated with DNR orders across racial/ethnic groups may reach a broad patient population and reduce end-of-life care disparities. PMID:25145489

  20. What matters most for end-of-life care? Perspectives from community-based palliative care providers and administrators

    PubMed Central

    Mistry, Bina; Bainbridge, Daryl; Bryant, Deanna; Tan Toyofuku, Sue; Seow, Hsien

    2015-01-01

    Objectives There has been little research conducted to understand the essential meaning of quality, community-based, end-of-life (EOL) care, despite the expansion of these services. The purpose of this study was to define what matters most for EOL care from the perspective of a diverse range of palliative care providers in the community who have daily encounters with death and dying. Methods We used interviews to explore the perceptions of providers and administrators from 14 specialised palliative care teams in Ontario, Canada. Participants were prompted with the question ‘What matters most for EOL care?’ Responses were analysed using a phenomenological approach to derive themes depicting the universal essence of EOL care. Results Data from 107 respondents were obtained and analysed, from which 40 formulated concepts emerged; these were further grouped into 9 themes. Of the respondents, 39% were nurses, 19% physicians, 27% were supervisors or executives and 15% other. The most predominate concept was that Patient's Wishes are Fulfilled, cited by almost half the respondents. The most prominent themes were Addressing the Non-physical Needs, Healthcare Teams’ Nature of Palliative Care Delivery, Patient Wishes are Honoured, Addressing the Physical Needs, Preparing for and Accepting Death, Communication and Relationship Development, and Involving and Supporting the Family. Conclusions 9 critical domains of EOL care evolved from the interviews, indicating that quality EOL care extends beyond managing physical pain, but includes a holistic perspective of care, a healthcare team dedicated to the EOL journey and a patient-centred pathway. Tailoring the provision of care to consider these important elements plays a critical role in supporting a positive EOL experience for patients and families. PMID:26124510

  1. The Balm of Gilead Project: a demonstration project on end-of-life care for safety-net populations.

    PubMed

    Kvale, Elizabeth A; Williams, Beverly R; Bolden, James L; Padgett, Carol G; Bailey, F Amos

    2004-06-01

    The Balm of Gilead is a comprehensive program of end-of-life care for the populations served by the "safety net" public health system in Alabama's largest county. The Balm of Gilead serves terminally ill persons, predominantly of minority ethnic status who as a group are relatively younger than the national hospice population, and typically lacking in personal financial resources. Care provided by the Balm of Gilead addresses the holistic needs associated with terminal illness in each of its stages and each of its treatment settings. Balm of Gilead professionals and volunteers provide continuity of care across a continuum that includes inpatient palliative care, home hospice services, and specialized palliative care in nursing homes and other community residential settings. Cooper Green Hospital and the Jefferson County Department of Health are principal partners in the program. Community partnerships with local foundations, colleges and universities, faith communities, civic groups, and professional groups complete the collaborative network of the Balm of Gilead Project. This report discusses work to date toward fulfilling the project's two primary objectives: (1) to build the infrastructure necessary to support a comprehensive palliative care program that is available to county residents regardless of their ability to pay and (2) to develop systems and services to foster the institutional and community values that promote excellence in end-of-life care. The Project's current status and future challenges are reviewed. PMID:15265364

  2. Experiences in end-of-life care in the Intensive Care Unit: A survey of resident physicians

    PubMed Central

    Mohamed, Zubair Umer; Muhammed, Fazil; Singh, Charu; Sudhakar, Abish

    2016-01-01

    Background and Aims: The practice of intensive care includes withholding and withdrawal of care, when appropriate, and the goals of care change around this time to comfort and palliation. We decided to survey the attitudes, training, and skills of intensive care residents in relation to end-of-life (EoL) care. All residents at our institute who has worked for at least a month in an adult Intensive Care Unit were invited to participate. Materials and Methods: After Institutional Ethics Committee approval, a Likert-scale questionnaire, divided into five composite measures of EoL skills including training and attitude, was handed over to individual residents and completed data were anonymized. Frequency and descriptive analysis was performed for the demographic variables. Central tendency, variability, and reliability were examined for the five composite measures. Scale internal consistency was checked by Cronbach's coefficient alpha. Multivariate forward conditional regression analysis was conducted to examine the association of demographic data or EoL experience to composite measures. Results: Of the 170 eligible residents, we received 120 (70.5%) responses. Conclusions: Internal medicine residents have more experience in caring for dying patients and conducting EoL discussions. Even though majority of participants reported that they are comfortable with the concept of EoL care, this does not always reflect the actual practice in the hospital. There is a need for further training in skills around EoL care. As this is a self-assessment survey, the specific measures of attitudes and skills in EoL are poorly reflected, indicating a need for further research.

  3. Preferences for Professional vs. Informal Care at End of Life Amongst African American Drug Users with HIV/AIDS

    PubMed Central

    Mitchell, Mary M.; Robinson, Allysha C.; Nguyen, Trang Q.; Smith, Thomas J.; Knowlton, Amy R.

    2014-01-01

    Introduction With the advent of antiretroviral therapies (ART), persons living with HIV/AIDS (PLHIVs) are living longer, but with increased impairment and care needs. The purpose of this study was to assess whether a vulnerable population of PLHIVs preferred informal versus professional care when unable to care for themselves, and individual and support network factors associated with preference for informal care. The findings have potential implications for facilitating the population’s informal care at end of life. Method Data were from the BEACON study, which examined social factors associated with health outcomes among former or current drug using PLHIVs in Baltimore, Maryland. Structural equation modeling was used to identify individual and support network characteristics associated with PLHIVs’ preference for informal (family or friends) compared to professional care. Results The structural equation model indicated preference for informal care was associated with female sex, greater informal care receipt, reporting one’s main partner (i.e., boy/girlfriend, spouse) as the primary source of informal care, and a support network comprised of greater numbers of female kin and persons supportive of the participant’s HIV treatment adherence. Not asking for needed help to avoid owing favors was associated with preferring professional care. Discussion Findings suggest that interventions to promote informal end of life care should bolster supportive others’ resources and skills for care provision and treatment adherence support, and should address perceived norms of reciprocity. Such intervention will help ensure community caregiving in a population with high needs for long term care. PMID:25196174

  4. Directly Observed Patient–Physician Discussions in Palliative and End-of-Life Care: A Systematic Review of the Literature

    PubMed Central

    Reid, M. Carrington; Shengelia, Rouzi; Adelman, Ronald D.

    2010-01-01

    Abstract Objectives To review studies that used direct observation (i.e., videotaping or audiotaping) methods in palliative/end-of-life care communication research. Design Descriptive thematic analysis. Setting : Multinational studies were conducted in both the outpatient and inpatient setting. Measurements Extensive bibliographic searches (January 1, 1998 to July 31, 2009) of English-language literature involving physician–patient (or physician–family) interactions were conducted and augmented by reviews of reference listings. Three investigators independently abstracted key information from each article. Results Of the 20 retained articles, most enrolled young-old participants (mean age, 60 years) who were white and had a cancer diagnosis. Patient/family participation rates ranged from 68% to 89% demonstrating feasibility of this approach when studying palliative/end-of-life care communication issues. Four common themes were identified: (1) physicians focus on medical/technical and avoid emotional/quality of life issues; (2) sensitive topics are perceived by physicians to take longer to discuss and often do take longer to discuss; (3) physicians dominate discussions; and (4) patient/family satisfaction is associated with supportive physician behaviors. Conclusions This study demonstrates that direct observation methods can be feasibly used when studying physician–patient/physician–family communication in palliative/end-of-life care, but few investigations have utilized this approach. This article highlights areas that need improvement, including physicians' ability to address patient/family emotional issues and provide what patients and families find most satisfying (participation and support). A particular focus on older patients and patients with end-stage or late-stage chronic (noncancer) illness, the adaptation/application of existing communication measurement tools to capture palliative care communication issues, and development of corresponding

  5. Estimating the cost of caring for people with cancer at the end of life: A modelling study

    PubMed Central

    Round, Jeff; Jones, Louise; Morris, Steve

    2015-01-01

    Background: People with advanced cancer require a range of health, social and informal care during the final phases of life. The cost of providing care to this group as they approach the end of their lives is unknown, but represents a significant cost to health and social care systems, charities patients and their families. Aim: In this study, we estimate the direct and indirect costs for lung, breast, colorectal and prostate cancer patients at the end of life (from the start of strong opioids to death) in England and Wales. Methods: We use a modelling-based approach to estimate the costs of care. Data are estimated from the literature and publicly available data sets. Probabilistic sensitivity analysis is used to reflect uncertainty in model estimates. Results: Total estimated costs for treating people with these four cancers at the end of life are £641 million. Breast and prostate cancer patients have the highest expected cost per person at £12,663 (95% credible interval (CI): £1249–£38,712) and £14,859 (95% CI: £1391–£46,424), respectively. Lung cancer has the highest expected total cost (£226m). The value of informal care giving accounts for approximately one-third of all costs. Conclusion: The cost to society of providing care to people at the end of their lives is significant. Much of this cost is borne by informal care givers. The cost to formal care services of replacing this care with paid care giving would be significant and demand for care will increase as the demographic profile of the population ages. PMID:26199134

  6. First Medicare Demonstration of Concurrent Provision of Curative and Hospice Services for End-of-Life Care.

    PubMed

    Harrison, Krista L; Connor, Stephen R

    2016-08-01

    Hospice developed in the United States in the 1970s as a way to address unmet needs for end-of-life care: support for pain and symptom management provided in the location and manner that the patient and family prefer. In Europe and Australia, hospice is available from the time of diagnosis of an advanced life-limiting illness onward, but in the United States, the Medicare hospice benefit restricts eligibility for these services to patients who no longer receive curative treatment. We provide background and analysis of the first Medicare hospice demonstration in 35 years that will test the concurrent provision of curative and hospice services for terminally ill individuals with a life expectancy of six months or less. This demonstration is a harbinger of potential policy changes to hospice and palliative care in the United States that could reduce barriers to end-of-life care that aligns with patient and family preferences as the demand for care increases with an aging population. PMID:27310352

  7. 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. PMID:24870589

  8. 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. PMID:26823112

  9. 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. PMID:24295099

  10. Direct Engagement With Communities and Interprofessional Learning to Factor Culture Into End-of-Life Health Care Delivery.

    PubMed

    Boucher, Nathan A

    2016-06-01

    Aging patients with advanced or terminal illnesses or at the end of their lives become highly vulnerable when their cultural needs-in terms of ethnic habits, religious beliefs, and language-are unmet. Cultural diversity should be taken into account during palliative care delivery (i.e., noncurative, supportive care during advanced illness or at the end of life). Providers and systems deliver disparate palliative care to diverse patients. I present 2 strategies to improve how culturally diverse populations are served during advanced illness: (1) health service provider assessment of local populations to understand service populations' cultural needs and guide services and policy; and (2) interprofessional education to improve multicultural understanding among the health care workforce. PMID:26985609

  11. Nurses' perceptions of factors influencing patient decision support for place of care at the end of life.

    PubMed

    Murray, Mary Ann; Wilson, Keith; Kryworuchko, Jennifer; Stacey, Dawn; O'Connor, Annette

    2009-01-01

    Although patients have more choices about where to receive care as death approaches, they often need help with decision making. This study identified factors that influence nurses' provision of decision support. A total of 22 nurses, from 3 health networks, participated in semistructured interviews. Overall, nurses held favorable attitudes toward providing decision support for place of care at end of life. Overlap between other professionals' roles and nurses' clinical experience affected nurses' decision support behaviors. Although nurses considered decision support to be part of patient-centered care, they report a lack of skills, confidence, and tools to help them provide it. These findings confirm the need to develop practical postlicensure education strategies and ways to embed patient decision support tools into systems of care. PMID:19213926

  12. 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

  13. A consensus for change: parent and professional perspectives on care for children at the end-of-life.

    PubMed

    Price, Jayne; Jordan, Joanne; Prior, Lindsay

    2013-01-01

    The objective of this study was to investigate health and social care professionals' perspectives on developing services for children with life limiting conditions at the end-of-life using issues identified by bereaved parents as priorities. The study adopted qualitative methodology using nominal group technique in focus groups (n = 5) to collect data from 35 health and social care professionals. Six issues were identified across professional groupings as particularly challenging within the context of caring for children at the end-of-life: truth telling; symptom management; communication with, and relationships between families and professionals; emotional impact, the withdrawal of feeding or treatment and sibling support. Strong resonance was noted between professionals and parents in the emphasis placed on issues related to talking about death (to child and siblings) and decision-making about the withdrawal of treatment. Conversely, late referral to hospice care and lack of services in the community dominated accounts of parents whose children had non malignant conditions, but were not prioritized by professionals. Although the latter focused on the need for and challenges associated with optimizing symptom management, most parents viewed symptom control as highly effective. Caring for a dying child is a multidimensional experience for both parents and professionals. Convergence of thinking carries three main implications for service development. Firstly, the need for "joined up" palliative care services, particularly concerning timely referral to the range of support services. Secondly, more structured bereavement services. Third, within an ethos of family centered care, needs of siblings should be addressed effectively. PMID:23600569

  14. Concepts of personhood and autonomy as they apply to end-of-life decisions in intensive care.

    PubMed

    Walker, Paul; Lovat, Terence

    2015-08-01

    Amongst traditionally-available frameworks within which end-of-life decisions in Intensive Care Units (ICU) are situated, we favour Ordinary versus Extra-ordinary care distinctions as the most helpful. Predicated on this framework, we revisit the concepts of personhood and autonomy. We argue that a full account of personhood locates its foundation in relationships with others, rather than merely in "rationality". A full account of autonomy also recognises relationships with others, as well as the actual reality of the patient's situation-in-the-world. The fact that, when critically ill, the patient may no longer be able to take an active role in decision-making does not bring about the end of their personhood, or of their autonomy. Because the patient's autonomy is intimately linked to their relationships with others, once critical illness supervenes, respect for their autonomy devolves to those others with whom the patient is in relationship. In practical application, this means that there must be a dialogue, as the end-of-life of the critically-ill patient in ICU comes into view. Such dialogue should be grounded on this understanding in order to conform best to moral philosophical principles. Ideally the dialogue will involve all those with whom the patient is in relationship and, practical difficulties within an ICU notwithstanding, will aim to be inclusive, non-coercive and reflective as it seeks to maximise the good of the patient in their unique context. PMID:25304603

  15. [Advance Care Planning and Decisions to limit treatment at the end of life - the view from medical ethics and psychooncology].

    PubMed

    Winkler, Eva C; Heußner, Pia

    2016-03-01

    Decisions to limit treatment are important in order to avoid overtreatment at the end of life. They proceed more than half of expected deaths in Europe and the US, but are not always communicated with the patient in advance. One reason for non-involvement is that conversations that prepare patients for end-of-life decisions and work out their preferences do not take place on a regular basis. At the same time there is growing evidence that such communication improves patients' quality of life, reduces anxiety and depression and allows patients to develop a realistic understanding of their situation - which in turn is a prerequisite for shared decision making about limiting treatment. In this paper we define "treatment limitation" and explain the medical ethics perspective. The main focus, however, is on the causes that hinder advanced care planning and conversations about limiting treatment in the care of patients with advanced disease. Finally the evidence for approaches to improve the situation is presented with concrete suggestions for solutions. PMID:26983109

  16. 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

  17. Is a good death possible in Australian critical and acute settings?: physician experiences with end-of-life care

    PubMed Central

    2014-01-01

    Background In Australia approximately 70% of all deaths are institutionalised but over 15% of deaths occur in intensive care settings where the ability to provide a “good death” is particularly inhibited. Yet, there is a growing trend for death and dying to be managed in the ICU and physicians are increasingly challenged to meet the new expectations of their specialty. This study examined the unexplored interface between specialised Australian palliative and intensive care and the factors influencing a physician’s ability to manage deaths well. Method A qualitative investigation was focused on palliative and critical/acute settings. A thematic analysis was conducted on semi-structured in-depth interviews with 13 specialist physicians. Attention was given to eliciting meanings and experiences in Australian end-of-life care. Results Physicians negotiated multiple influences when managing dying patients and their families in the ICU. The way they understood and experienced end-of-life care practices was affected by cultural, institutional and professional considerations, and personal values and beliefs. Interpersonal and intrapsychic aspects highlighted the emotional and psychological relationship physicians have with patients and others. Many physicians were also unaware of what their cross-disciplinary colleagues could or could not do; poor professional recognition and collaboration, and ineffective care goal transition impaired their ability to assist good deaths. Experience was subject to the efficacy of physicians in negotiating complex bedside dynamics. Conclusions Regardless of specialty, all physicians identified the problematic nature of providing expert palliation in critical and acute settings. Strategies for integrating specialised palliative and intensive care were offered with corresponding directions for future research and clinical development. PMID:25147481

  18. 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. PMID:26459613

  19. 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

  20. 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. PMID:25533871

  1. 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

  2. Improving end-of-life care for ESRD patients: an initiative for professionals.

    PubMed

    Moss, Alvin H; Armistead, Nancy C

    2013-09-01

    The Coalition for Supportive Care of Kidney Patients convened subject matter experts (SMEs) to assess the current state of palliative care for pre-dialysis (chronic kidney disease) and end-stage renal disease patients (stages 3-5). The SMEs noted that in the final month of life, dialysis patients have the higher percentage of hospitalizations, longer length of stay, greater intensive care admissions, and higher number of deaths in hospitals than cancer or heart failure patients, but use hospice only half as much as these two groups. The group identified a strategic approach and framework for achieving specific aims to improve palliative care education of health care providers, raise awareness of supportive care resources, define palliative care skills for nephrologists, and continue the implementation of shared decision-making for individualized patient-centered care. PMID:24266270

  3. 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

  4. Cancer Care Experiences and the Use of Complementary and Alternative Medicine at End of Life in Nova Scotia’s Black Communities

    PubMed Central

    Maddalena, Victor J.; Bernard, Wanda Thomas; Etowa, Josephine; Murdoch, Sharon Davis; Smith, Donna; Jarvis, Phyllis Marsh

    2016-01-01

    Purpose This qualitative study examines the meanings that African Canadians living in Nova Scotia, Canada, ascribe to their experiences with cancer, family caregiving, and their use of complementary and alternative medicine (CAM) at end of life. Design Case study methodology using in-depth interviews were used to examine the experiences of caregivers of decedents who died from cancer in three families. Findings For many African Canadians end of life is characterized by care provided by family and friends in the home setting, community involvement, a focus on spirituality, and an avoidance of institutionalized health services. Caregivers and their families experience multiple challenges (and multiple demands). There is evidence to suggest that the use of CAM and home remedies at end of life are common. Discussion The delivery of palliative care to African Canadian families should consider and support their preference to provide end-of-life care in the home setting. PMID:20220031

  5. Caregivers experiences of managing medications for palliative care patients at the end of life: a qualitative study.

    PubMed

    Sheehy-Skeffington, Barbara; McLean, Sarah; Bramwell, Michael; O'Leary, Norma; O'Gorman, Aisling

    2014-03-01

    Informal caregivers are important in enabling palliative care patients to die at home, including their role in managing medications. Often these patients are taking multiple medications, imposing an unnecessary burden on those who are already struggling with oral intake. A literature review revealed that, while there are a number of qualitative studies published examining the experience of caregivers looking after patients at the end of life, there is a dearth of published studies specifically examining the impact of managing medications on caregivers. This study explores the experience of caregivers managing medications for patients dying at home, focusing on the impact of polypharmacy, the use of syringe drivers and the use of "as needed" medications for symptom control. Three focus groups were performed, involving bereaved caregivers of patients that had died at home, and were analysed using content thematic analysis. Themes that emerged include: the significant burden of polypharmacy; the positive impact of subcutaneous infusions; the value of being able to give medications as needed for symptom control; the importance of clear guidance to assist with medication management. Strategies are suggested that might ease the burden of medications at the end of life. PMID:24526788

  6. Preparing the Pediatric Dentist for Palliative and End-of-life Care.

    PubMed

    Sarvas, Elise W; Schwantes, Scott A; Karp, Jeffrey M

    2016-01-01

    Pediatric dentists are the primary providers of dental homes for children with life-threatening and complex chronic conditions. These children are increasingly living at home and seeking health care in community-based settings, including dental offices. Pediatric dentists may feel ill prepared to assume the roles and responsibilities of a pediatric palliative care provider due to limited education and training during dental school and residency; however, they should be sensitive to the palliative care needs of children and families. The purpose of this clinical article was to highlight palliative care scenarios in pediatric dentistry and provide actionable resources to empower pediatric dentists to gather health care information, make informed ethical decisions, promote patient- and family-centered care, and prepare dentists and their dental teams for episodes of death and bereavement when providing a dental home to patients with life-threatening and complex chronic conditions. PMID:27557917

  7. End-of-Life Decisions and Palliative Care in Advanced Heart Failure.

    PubMed

    Meyers, Deborah E; Goodlin, Sarah J

    2016-09-01

    Advanced heart failure (HF) therapies are focused on extending life and improving function. In contrast, palliative care is a holistic approach that focuses on symptom alleviation and patients' physical, psychosocial, and spiritual needs. HF clinicians can integrate palliative care strategies by incorporating several important components of planning and decision-making for HF patients. Future care planning (FCP) for HF patients should incorporate the basic tenets of shared decision-making (SDM). These include understanding the patient's perspective and care preferences, articulating what is medically feasible, and integrating these considerations into the overall care plan. Use of defined triggers for FCP can stimulate important patient-caregiver conversations. Guidelines advocate an annual review of HF status and future care preferences. Advance directives are important for any individual with a chronic, life-limiting illness and should be integrated into FCP. Nevertheless, use of advance directives by HF patients is extremely low. Consideration of illness trajectories and risk-scoring tools might facilitate prognostication and delivery of appropriate HF care. Decisions about heart transplantation or left ventricular assist device implantation should include planning for potential complications associated with these therapies. Such decisions also should include a discussion of palliative management, as an alternative to intervention and also as an option for managing symptoms or adverse events after intervention. Palliative care, including FCP and SDM, should be integrated into the course of all patients with advanced HF. Clinicians who provide HF care should acquire the skills necessary for conducting FCP and SDM discussions. PMID:27568873

  8. Quality of Life and Cost of Care at the End of Life: The Role of Advance Directives

    PubMed Central

    Garrido, Melissa M.; Balboni, Tracy A.; Maciejewski, Paul K.; Bao, Yuhua; Prigerson, Holly G.

    2014-01-01

    Context Advance directives (ADs) are expected to improve patients’ end-of-life outcomes, but retrospective analyses, surrogate recall of patients’ preferences, and selection bias have hampered efforts to determine ADs’ effects on patient outcomes. Objectives To examine associations among ADs, quality of life, and estimated costs of care in the week before death. Methods We used prospective data from interviews of 336 patients with advanced cancer and their caregivers, and analyzed patient baseline interview and caregiver and provider post-mortem evaluation data from the Coping with Cancer study. Cost estimates were from the Healthcare Cost and Utilization Project Nationwide Inpatient Sample and published Medicare payment rates and cost estimates. Outcomes were quality of life (range 0-10) and estimated costs of care received in the week before death. Because patient end-of-life care preferences influence both AD completion and care use, analyses were stratified by preferences regarding heroic endof-life measures (everything possible to remain alive). Results Most patients did not want heroic measures (76%). Do-not-resuscitate (DNR) orders were associated with higher quality of life (β=0.75, standard error=0.30, P=0.01) across the entire sample. There were no statistically significant relationships between DNR orders and outcomes among patients when we stratified by patient preference, or between living wills/durable powers of attorney and outcomes in any of the patient groups. Conclusion The associations between DNR orders and better quality of life in the week before death indicate that documenting preferences against resuscitation in medical orders may be beneficial to many patients. PMID:25498855

  9. 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.…

  10. The Myth Regarding the High Cost of End-of-Life Care

    PubMed Central

    Kelley, Amy S.

    2015-01-01

    Health care reform debate in the United States is largely focused on the highly concentrated health care costs among a small proportion of the population and policy proposals to identify and target this “high-cost” group. To better understand this population, we conducted an analysis for the Institute of Medicine Committee on Approaching Death using existing national data sets, peer-reviewed literature, and published reports. We estimated that in 2011, among those with the highest costs, only 11% were in their last year of life, and approximately 13% of the $1.6 trillion spent on personal health care costs in the United States was devoted to care of individuals in their last year of life. Public health interventions to reduce health care costs should target those with long-term chronic conditions and functional limitations. PMID:26469646

  11. 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

  12. Predictors of Intensive End-of-Life and Hospice Care in Latino and White Advanced Cancer Patients

    PubMed Central

    Maciejewski, Paul K.; Jimenez, Rachel; Nilsson, Matthew; Paulk, Elizabeth; Stieglitz, Heather; Prigerson, Holly G.

    2013-01-01

    Abstract Background The role of end-of-life (EOL) care preferences and conversations in receipt of care near death for Latinos is unclear. Objective This study examines rates and predictors of intensive EOL and hospice care among Latino and white advanced cancer patients. Design Two-hundred-and-ninety-two self-reported Latino (n=58) and white (n=234) Stage IV cancer patients participated in a U.S. multisite, prospective, cohort study from September 2002 to August 2008. The Latino and white, non-Hispanic participants were interviewed and followed until death, a median of 118.5 days from baseline. Measurements Patient-reported, baseline predictors of EOL care included EOL care preference; terminal illness acknowledgement; EOL discussion; completion of a DNR order; and religious coping. Caregiver postmortem interviews provided information regarding EOL care received. Intensive EOL care was defined as resuscitation and/or ventilation followed by death in an intensive care unit. Hospice was either in- or outpatient. Results Latino and white patients received intensive EOL and hospice care at similar rates (5.2% and 3.4% for intensive care, p=0.88; 70.7% versus 73.4% for hospice, p=0.33). No white or Latino patient who reported a DNR order or EOL discussion at baseline received intensive EOL care. Religious coping and a preference for life-extending care predicted intensive EOL care for white patients (adjusted odds ratio [aOR] 6.69 [p=0.02] and aOR 6.63 [p=0.01], respectively), but not for Latinos. No predictors were associated with Latino hospice care. Conclusions EOL discussions and DNR orders may prevent intensive EOL care among Latino cancer patients. Efforts should continue to engage Latino patients and caregivers in these activities. PMID:24053593

  13. Complex Care Options for Patients With Advanced Heart Failure Approaching End of Life.

    PubMed

    Wordingham, Sara E; McIlvennan, Colleen K; Dionne-Odom, J Nicholas; Swetz, Keith M

    2016-02-01

    Care for patients with advanced cardiac disease continues to evolve in a complex milieu of therapeutic options, advanced technological interventions, and efforts at improving patient-centered care and shared decision-making. Despite improvements in quality of life and survival with these interventions, optimal supportive care across the advanced illness trajectory remains diverse and heterogeneous. Herein, we outline challenges in prognostication, communication, and caregiving in advanced heart failure and review the unique needs of patients who experience frequent hospitalizations, require chronic home inotropic support, and who have implantable cardioverter-defibrillators and mechanical circulatory support in situ, to name a few. PMID:26829929

  14. Policies to improve end-of-life decisions in Flemish hospitals: communication, training of health care providers and use of quality assessments

    PubMed Central

    2009-01-01

    Background The prevalence and implementation of institutional end-of-life policies has been comprehensively studied in Flanders, Belgium, a country where euthanasia was legalised in 2002. Developing end-of-life policies in hospitals is a first step towards improving the quality of medical decision-making at the end-of-life. Implementation of policies through quality assessments, communication and the training and education of health care providers is equally important in improving actual end-of-life practice. The aim of the present study is to report on the existence and nature of end-of-life policy implementation activities in Flemish acute hospitals. Methods A cross-sectional mail survey was sent to all acute hospitals (67 main campuses) in Flanders (Belgium). The questionnaire asked about hospital characteristics, the prevalence of policies on five types of end-of-life decisions: euthanasia, palliative sedation, alleviation of symptoms with possible life-shortening effect, do-not-resuscitate decision, and withdrawing or withholding of treatment, the internal and external communication of these policies, training and education on aspects of end-of-life care, and quality assessments of end-of-life care on patient and family level. Results The response rate was 55%. Results show that in 2007 written policies on most types of end-of-life decisions were widespread in acute hospitals (euthanasia: 97%, do-not-resuscitate decisions: 98%, palliative sedation: 79%). While standard communication of these policies to health care providers was between 71% and 91%, it was much lower to patients and/or family (between 17% and 50%). More than 60% of institutions trained and educated their caregivers in different aspects on end-of-life care. Assessment of the quality of these different aspects at patient and family level occurred in 25% to 61% of these hospitals. Conclusions Most Flemish acute hospitals have developed a policy on end-of-life practices. However, communication

  15. End of life care in lung cancer patients: not at life's end?

    PubMed

    Janssens, Annelies; Teugels, Liesbeth; van Meerbeeck, Jan

    2013-10-01

    Metastatic lung cancer has a poor prognosis, with a mortality of more than 80% within one year. As chemo- and radiotherapy are both effective in the palliation of symptoms, the emphasis of management is often too much put on these therapies, inducing unrealistic expectations. Since the most important aspect of caring for patients with metastatic lung cancer is to optimize or restore their quality of life (QoL), we need to integrate standard oncologic therapy with early palliative care to achieve a better understanding of the disease by the patient and his caregivers. PMID:25841387

  16. 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…

  17. 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…

  18. 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. PMID:27148997

  19. Education in end-of-life care: bridging disciplinary and institutional boundaries.

    PubMed

    Schrader, S L; Nelson, M L; Eidsness, L; Benedict, L; Brechtelsbauer, D; Corum, S; Dachtler, C; Harris, J G; Hearns, V; Hedges, D; Heins, J; Holland, P; Johnson, K; Schmid, L; Schroeder, P; Schuller, L; Scott, H; Tibbitts, G M

    2005-09-01

    This paper describes the development of an interdisciplinary, interinstitutional seminar in palliative care for South Dakota students in medicine, nursing, pharmacy, chaplaincy, and social work. Student outcomes from six seminars conducted during 2001-2004 are reported, and recommendations for future educational efforts are outlined. PMID:16422552

  20. Caring for Pediatric Patients' Families at the Child's End of Life.

    PubMed

    Mullen, Jodi E; Reynolds, Melissa R; Larson, Jennifer S

    2015-12-01

    Nurses play an important role in supporting families who are faced with the critical illness and death of their child. Grieving families desire compassionate, sensitive care that respects their wishes and meets their needs. Families often wish to continue relationships and maintain lasting connections with hospital staff following their child's death. A structured bereavement program that supports families both at the end of their child's life and throughout their grief journey can meet this need. PMID:26628545

  1. Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life.

    PubMed

    Hopkinson, Jane B; Wright, David N M; Corner, Jessica L

    2005-10-01

    Palliative care researchers face many ethical and practical challenges. In particular, recruitment has proven difficult. New methodologies and methods need to be developed if barriers are to be overcome. This paper presents an example of a participatory approach to research with people receiving palliative care services. The approach was used for recruitment into an in-depth multi-methods study of weight loss and eating difficulties experienced by people with advanced cancer. Methods included a survey of patients on the case-loads of two community palliative care teams working in the South of England in 2003. The questionnaire was returned by 199 patients, 58% of the total patient population under the care of the two teams. Benefits of the approach taken are detailed, but also issues that emerged across the course of recruitment, thus highlighting points of interest for palliative care researchers. It is proposed that the success of the recruitment process can be attributed to the adoption of a context specific participatory approach. Successful recruitment into the study challenges the widely held belief that, for practical and ethical reasons, it is inappropriate to study people who are approaching the end of life. It demonstrates that a participatory approach enables clinical practice and research to share decision making and values, leading to a feasible and successful recruitment process that is acceptable to clinicians, researchers and patients. PMID:16295285

  2. The Colorado State University Pet Hospice program: end-of-life care for pets and their families.

    PubMed

    Bishop, Gail A; Long, Christie C; Carlsten, Kelly S; Kennedy, Katie C; Shaw, Jane R

    2008-01-01

    While the concept of hospice care for humans has existed for decades and is an integral part of the dying process, providing hospice care for companion animals is a new and growing service. Veterinarians and pet-owners have recently recognized that there is a need and a demand to care for pets with terminal illnesses. The Colorado State University Pet Hospice program meets those needs through supporting pets, their owners, and veterinarians, and educating professional veterinary students in end-of-life care. Developed in 2003, Pet Hospice is a student-run program that trains veterinary students in animal hospice care, and matches them with the family and veterinarian of a terminally ill pet in the community. Since its inception, 101 veterinary student volunteers have been trained and provided support to 68 families. Continued expansion of the client base, enlargement of the network of veterinarians and volunteers, and positive program evaluations reflect the strong impact of Pet Hospice and its support from veterinary students, veterinarians, and the community. PMID:19228904

  3. End-of-Life Care Intensity among Adolescent and Young Adult Cancer Patients in Kaiser Permanente Southern California

    PubMed Central

    Mack, Jennifer W.; Chen, Lie H.; Cannavale, Kimberley; Sattayapiwat, Olivia; Cooper, Robert M.; Chao, Chun R.

    2015-01-01

    Importance Cancer is the leading disease-related cause of death among adolescents and young adults (AYAs), but little is known about the care that AYA patients with cancer receive at the end of life (EOL). Objective To evaluate the intensity of EOL care among AYA cancer patients. Design Cross-sectional study using cancer registry and electronic health record data. Setting Kaiser Permanente Southern California (KSPC), an integrated health care delivery system. Participants 663 AYA patients with either (1) stage I-III cancer and evidence of cancer recurrence or (2) stage IV cancer at diagnosis who received care in KPSC and died in the years 2001–2010. Patients were eligible if they were aged 15–39 at death. Main Outcome Measures Chemotherapy use in the last 14 days of life, intensive care unit (ICU) care in the last 30 days of life, more than one emergency room (ER) visit in the last 30 days of life, hospitalization in the last 30 days of life, and a composite measure of medically intensive EOL care comprising any of the aforementioned measures. Results 11% of patients (72/663) received chemotherapy within 14 days of death. In the last 30 days of life, 22% of patients (144/663) were admitted to the ICU; 22% (147/663) had >1 ER visit; and 62% (413/663) were hospitalized. Overall, 68% (449/663) of subjects received at least one medically intensive EOL care measure. Conclusions and Relevance Most AYA patients receive at least one form of medically intensive EOL care. These findings suggest the need to better understand EOL care preferences and decision-making in this young population. PMID:26181778

  4. 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

  5. Opinion on the ethical aspects of health care of patients at the end of life.

    PubMed

    Serrão, D

    1999-01-01

    Demographic evolution and scientific progress in the treatment of fatal diseases have brought about a large number of disabled old persons and of greatly dependent persons. Nowadays, the dying process of people in such conditions is slower, though irreversible, and it has created a new form of medical care known as palliative medicine. Seven situations of this kind are discussed, with the corresponding ethical appraisal of the possible medical decisions in each case. The opinion on this matter by the Portuguese National Council of Ethics for the Life Sciences, based on the initial report, is then reproduced. It is against euthanasia strictu sensu being legalised and no longer a criminal offence, recommending however the development of all forms of palliative medicine. PMID:10436735

  6. Providing end-of-life care in care homes for older people: a qualitative study of the views of care home staff and community nurses.

    PubMed

    Goddard, Cassie; Stewart, Frances; Thompson, Genevieve; Hall, Sue

    2013-02-01

    The study aimed to explore the views of care home staff (CHS) and community nurses (CNs) on providing end-of-life care (EOLC) in care homes. Participants were randomly selected and qualitative interviews conducted with 80 CHS and 10 CNs. Themes emerging from the data included the following: The meaning of EOLC; starting EOLC; dying in the care home; stress of providing EOLC; improving EOLC; and the role of the CN. CHS felt that planning for the end of life was important before residents reached the dying phase, which some found difficult to determine. Although CHS wished to avoid residents being transferred to hospital to die, they acknowledged that improvements in their skills and the resources available to them were needed to manage EOLC effectively. CNs were critical of the EOLC provided in some care homes, reporting tensions over their relationship with CHS. As the number of older people who die in care homes increases, there is a need to overcome these barriers to provide good EOLC. PMID:25473926

  7. Update on End-of-Life Care Training During Nephrology Fellowship: A Cross-sectional National Survey of Fellows

    PubMed Central

    Combs, Sara A.; Culp, Stacey; Matlock, Daniel D.; Kutner, Jean S.; Holley, Jean L.; Moss, Alvin H.

    2014-01-01

    Background Patients with end-stage renal disease have high mortality and symptom burden. Past studies demonstrated that nephrologists do not feel prepared to care for their patients at the end of life (EOL). We sought to characterize current palliative and EOL care education received during nephrology fellowship and compare this to data from 2003. Study Design Cross-sectional online survey of second year nephrology trainees. Responses were compared to a similar survey in 2003. Setting & Participants 104 US nephrology fellowship programs in 2013. Measurements Quality of training in and attitudes toward EOL care, and knowledge and preparedness to provide nephrology-specific EOL care. Results Of the 204 fellows included for analysis (response rate, 65%), significantly more thought it was moderately to very important to learn to provide care at EOL in 2013 compared to 2003 (95% vs. 54%; p<0.001). Nearly all (99%) fellows in both surveys believed physicians have a responsibility to help patients at EOL. Ranking of teaching quality during fellowship in all areas (mean, 4.1 ± 0.8 on a scale of 0-5 [0, poor; 5, excellent) and specific to EOL care (mean, 2.4 ± 1.1) was unchanged from 2003, but knowledge of the annual gross mortality rate for dialysis patients was nominally worse in 2013, as only 57% vs. 67% in 2003 answered correctly (p=0.05). To an open-ended question asking what would most improve fellows’ EOL care education, the most common response was a required palliative medicine rotation during fellowship. Limitations Assessments were based on fellows’ subjective perceptions. Conclusions Nephrology fellows increasingly believe they should learn to provide EOL care during fellowship. However, perceptions about the quality of this teaching have not improved during the past decade. Palliative care training should be integrated into nephrology fellowship curricula. PMID:25245300

  8. 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

  9. End-of-life care conversations with heart failure patients: a systematic literature review and narrative synthesis

    PubMed Central

    Barclay, Stephen; Momen, Natalie; Case-Upton, Steve; Kuhn, Isla; Smith, Elizabeth

    2010-01-01

    Background Current models of end-of-life care (EOLC) have been largely developed for cancer and may not meet the needs of heart failure patients. Aim To review the literature concerning conversations about EOLC between patients with heart failure and healthcare professionals, with respect to the prevalence of conversations; patients' and practitioners' preferences for their timing and content; and the facilitators and blockers to conversations. Design of study Systematic literature review and narrative synthesis. Method Searches of Medline, PsycINFO and CINAHL databases from January 1987 to April 2010 were conducted, with citation and journal hand searches. Studies of adult patients with heart failure and/or their health professionals concerning discussions of EOLC were included: discussion and opinion pieces were excluded. Extracted data were analysed using NVivo, with a narrative synthesis of emergent themes. Results Conversations focus largely on disease management; EOLC is rarely discussed. Some patients would welcome such conversations, but many do not realise the seriousness of their condition or do not wish to discuss end-of-life issues. Clinicians are unsure how to discuss the uncertain prognosis and risk of sudden death; fearing causing premature alarm and destroying hope, they wait for cues from patients before raising EOLC issues. Consequently, the conversations rarely take place. Conclusion Prognostic uncertainty and high risk of sudden death lead to EOLC conversations being commonly avoided. The implications for policy and practice are discussed: such conversations can be supportive if expressed as ‘hoping for the best but preparing for the worst’. PMID:21401993

  10. 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

    2014-12-01

    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:26187156

  11. 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. PMID:25045580

  12. 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

  13. 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

  14. Advance Care Planning Norms May Contribute to Hospital Variation in End-of-life ICU Use: A Simulation Study

    PubMed Central

    Barnato, Amber E.; Mohan, Deepika; Lane, Rondall K.; Huang, Yue Ming; Angus, Derek C.; Farris, Coreen; Arnold, Robert M.

    2014-01-01

    Background There is wide variation in end-of-life (EOL) intensive care unit (ICU) use among academic medical centers (AMCs). Objective To develop hypotheses regarding medical decision-making factors underlying this variation. Design High-fidelity simulation experiment involving a critically and terminally ill elder, followed by a survey and debriefing cognitive interview and evaluated using triangulated quantitative-qualitative comparative analysis. Setting 2 AMCs in the same state and health care system with disparate EOL ICU use. Subjects Hospital-based physicians responsible for ICU admission decisions. Measurements Treatment plan, prognosis, diagnosis, qualitative case perceptions and clinical reasoning. Main Results Sixty-seven of 111 (60%) eligible physicians agreed to participate; 48 (72%) could be scheduled. There were no significant between-AMC differences in 3-month prognosis or treatment plan, but there were systematic differences in perceptions of the case. Case perceptions at the low-intensity AMC seemed to be influenced by the absence of a DNR order in the context of norms of universal code status discussion and documentation upon admission, whereas case perceptions at the high-intensity AMC seemed to be influenced by the patient’s known metastatic gastric cancer in the context of norms of oncologists’ avoiding code status discussions. Conclusions In this simulation study of 2 AMCs, hospital-based physicians had different perceptions of an identical case. We hypothesize that different advance care planning norms may have influenced their decision-making heuristics. PMID:24615275

  15. 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. PMID:23496266

  16. Living and dying: responsibility for end-of-life care in care homes without on-site nursing provision - a prospective study.

    PubMed

    Handley, Melanie; Goodman, Claire; Froggatt, Katherine; Mathie, Elspeth; Gage, Heather; Manthorpe, Jill; Barclay, Stephen; Crang, Clare; Iliffe, Steve

    2014-01-01

    The aim of the study was to describe the expectations and experiences of end-of-life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed-method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill-health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; 'talking about dying' and 'integrating living and dying'. All participants stated that they were committed to providing end-of-life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end-of-life care, doubts from care home and primary healthcare staff about their capacity to work together when residents' trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time. PMID:23718786

  17. 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. PMID:22099816

  18. End of Life Care

    MedlinePlus

    ... impossible. In such a situation, treatment that only prolongs life may be appropriately withheld. In fact, the ... residents is to relieve discomfort rather than to prolong life. If individuals or their surrogates turn down ...

  19. Perceived outcomes of music therapy with Body Tambura in end of life care – a qualitative pilot study

    PubMed Central

    2014-01-01

    Background In recent years, music therapy is increasingly used in palliative care. The aim of this pilot study was to record and describe the subjective experiences of patients and their relatives undergoing music therapy with a Body Tambura in a German hospice and to develop hypotheses for future studies. Methods In a qualitative interview pilot study, data collection and analyses were performed according to the methodological framework of grounded theory. We included German-speaking patients, or relatives of patients, receiving end of life care in an inpatient hospice setting. Results 11 persons consisting of 8 patients (age range 51–82 years, 4 male and 4 female) and 3 relatives were treated and interviewed. All patients suffered from cancer in an advanced stage. The most often described subjective experiences were a relaxing and calming effect, sensations that the body feels lighter, and the generation of relaxing images and visualizations. Family members enjoyed listening to the music and felt more connected with the sick family member. Conclusion Patient reported beneficial aspects. The small sample size could be seen as a limitation. Assessment instruments measuring relaxation, stress, quality of life and should be included in future quantitative studies. PMID:24708801

  20. Experiences and needs of families regarding prognostic communication in an intensive care unit: supporting families at the end of life.

    PubMed

    Gutierrez, Karen M

    2012-01-01

    This article reports the results of a study designed to explore the experiences and needs of family members for prognostic communication at end of life in an intensive care unit (ICU). Subjects in this qualitative study included 20 family members of patients at high risk for death in 1 adult medical/surgical ICU. All subjects were interviewed once utilizing a semistructured interview format, with approximately half interviewed multiple times during the ICU stay. Families described 5 themes of information-related "work": (1) hearing and recalling, (2) accessing, (3) interpreting, (4) retaining, and (5) utilizing information for decision making. Barriers, including accessing physicians and cognitive issues from high levels of stress, made this work difficult. Families described a need for prognostic information, especially if the prognosis was poor. Because hearing this news was difficult, they needed it communicated with respect, sensitivity, and compassion. Suggestions for clinical practice to support families in their information-related work are presented. Overall, the importance of providers approaching communication from a holistic perspective, extending beyond simply passing on information, is emphasized. Viewing communication as a therapeutic modality, and communicating with compassion, sensitivity, and a genuine sense of caring, can help provide both the information and the emotional support and comfort families desperately need. PMID:22669004

  1. 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. PMID:27442346

  2. 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…

  3. Conceptualizing Surrogate Decision-Making at End of Life in the Intensive Care Unit using Cognitive Task Analysis

    PubMed Central

    Dionne-Odom, J. Nicholas; Willis, Danny G.; Bakitas, Marie; Crandall, Beth; Grace, Pamela J.

    2014-01-01

    Background Surrogate decision-makers (SDMs) face difficult decisions at end of life (EOL) for decisionally incapacitated intensive care unit (ICU) patients. Purpose Identify and describe the underlying psychological processes of surrogate decision-making for adults at EOL in the ICU. Method Qualitative case study design using a cognitive task analysis (CTA) interviewing approach. Participants were recruited from October 2012 to June 2013 from an academic tertiary medical center’s ICU located in the rural Northeastern United States. Nineteen SDMs for patients who had died in the ICU completed in-depth semi-structured CTA interviews. Discussion The conceptual framework formulated from data analysis reveals that three underlying, iterative, psychological dimensions: gist impressions, distressing emotions, and moral intuitions impact a SDM’s judgment about the acceptability of either the patient’s medical treatments or his or her condition. Conclusion The framework offers initial insights about the underlying psychological processes of surrogate decision-making and may facilitate enhanced decision support for SDMs. PMID:25982772

  4. Ethics of palliative care in late-stage cancer management and end-of-life issues in a depressed economy.

    PubMed

    Chukwuneke, F N

    2015-12-01

    The Hippocratic Oath has often been referred to as the ethical foundation of medical practice with the key restriction "cause no harm" which is also the principle of benevolence in bioethics. In medical profession, the Oath still exemplifies the key virtues of a doctor in its emphasis on the obligations toward the well-being of the individual patient. In management of end-stage cancer in a depressed economy such as Nigeria, we frequently encounter a wide range of ethical issues that arise in the provision of palliative care mostly due to the prevailing economic situation and cultural setting. Since most of these patients came from a lower economic class of the society, with little or no formal education and lived at a subsistence level, they often find it difficult to provide the medications needed. In a poor setting where health inequity is rife, and ignorance and poverty are commonplace, a good understanding of medical ethics with a good model of health care system will contribute to the health professional's decision-making that will be in the best interest of the patients. Physicians must protect the lives of their patients and should never hasten their death. In end-stage cancer management, we have to relieve suffering and pains, promote palliative care, and give psychological support but never abandoning the patient or initiate terminating their life. This presentation is a clinical analysis of the ethical issues regarding the management of end-stage cancer patients in a poor economy with a critical overview of end-of-life issues in African perspective. PMID:26620617

  5. 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

  6. 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

  7. 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…

  8. Elderly Indo-Caribbean Hindus and end-of-life care: a community-based exploratory study.

    PubMed

    Rao, Arun S; Desphande, Ohm M; Jamoona, Chan; Reid, Carrington M

    2008-06-01

    America's increasingly diverse older population needs clinicians to be familiar with ethnic and cultural issues pertaining to end-of-life care (EOLC). Although there has been some work addressing these issues among African-American, Hispanic-American, and some Asian-American populations, data on the Asian-Indian and Hindu populations remain sparse. This community-based exploratory study surveyed older Indo-Caribbean Hindu people (a subset of the Hindu population living in America) attending a senior center in Queens, New York. This study describes the demographic and health characteristics of this population and examines their attitudes, knowledge, and beliefs regarding some EOLC issues. Data on participants' demographic, medical, psychosocial, and cognitive status were obtained. Previously validated scales were used to collect data on subjects' acculturation, religiosity, and EOLC beliefs. Participants had a mean age+/-standard deviation of 71.1+/-5.1 years; 43% were married. Prevalent illnesses included diabetes mellitus (48%), hypertension (66%), and arthritis (57%). Subjects were socially connected, moderately acculturated, and religious. Scores on the Ethnicity and Attitudes Towards EOLC Survey indicated negative beliefs about life-sustaining or prolonging technology and positive attitudes about advance care directives (ACDs), truth-telling, and family involvement. The number of ACDs that had been completed and knowledge about ACDs was low. The Indo-Caribbean elder population in this study expressed attitudes and beliefs regarding EOLC similar to those of other ethnic elders. Many of these beliefs are in conflict with current EOLC practice patterns. This highlights the importance of being aware of differing attitudes to provide sensitive EOLC. PMID:18422944

  9. 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

  10. 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…

  11. 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. PMID:15659087

  12. 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

  13. 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…

  14. Effectively training the hospice and palliative medicine physician workforce for improved end-of-life health care in the United States.

    PubMed

    Bui, Thomas

    2012-09-01

    The widening gap between the demand for palliative care services and the supply of trained palliative care professionals has resulted in considerable end-of-life distress for patients. Without formal training in palliative medicine and end-of-life symptom management, physicians in the United States are less equipped to competently address seriously ill and dying patients' medical, emotional, and spiritual needs. Recent attempts within graduate medical education training deliberately seek to prepare a critical mass of physicians as the new hospice and palliative medicine workforce in the United States. In addition, healthcare reform proposals may re-define the National Health Service Corps (NHSC) post-graduate training over the next five years and the Hospice Medicare Benefit altogether. Healthcare policy options include steady changes at multiple levels of medical training -namely, medical school curriculum mandates, requiring all graduate physician residency training to foster patient-centered communication skills and discussions about advanced directives, and instituting palliative medicine proficiency Continuing Medical Education (CME) requirements for all states' medical licensing boards. Attracting qualified physicians to serve patients at the end of life, innovative medical school loan repayment programs and scholarships will also foster excellence in the field of hospice and palliative medicine. Correcting our current paucity of formal training in palliative medicine better utilizes hospice and restores patients' dignity at the end of life. PMID:22174315

  15. [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. PMID:21368542

  16. 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. PMID:25050661

  17. 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

  18. 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

  19. "Must do CPR??": strategies to cope with the new College of Physicians and Surgeons of Ontario policy on end-of-life care.

    PubMed

    Hawryluck, Laura; Oczkowski, Simon J W; Handelman, Mark

    2016-08-01

    The College of Physicians and Surgeons of Ontario recently released a new policy, Planning for and Providing Quality End-of-Life Care. The revised policy is more accurate in its consideration of the legal framework in which physicians practice and more reflective of ethical issues that arise in end-of-life (EOL) care. It also recognizes valid instances for not offering cardiopulmonary resuscitation (CPR). Nevertheless, the policy poses a significant ethical and legal dilemma-i.e., if disputes over EOL care arise, then physicians must provide CPR even when resuscitation would fall outside this medical standard of care. While the policy applies in Ontario, it is likely to influence other physician colleges across Canada as they review their standards of practice. This paper explores the rationale for the mandated CPR, clarifies the policy's impact on the medical standard of care, and discusses strategies to improve EOL care within the policy. These strategies include understanding the help-hurt line, changing the language used when discussing cardiac arrest, clarifying care plans during the perioperative period, engaging the intensive care unit team early in goals-of-care discussions, mentoring hospital staff to improve skills in goals-of-care discussions, avoiding use of the "slow code", and continuing to advocate for quality EOL care and a more responsive legal adjudication process. PMID:27126679

  20. Caregiver Evaluation of the Quality of End-Of-Life Care (CEQUEL) Scale: The Caregiver's Perception of Patient Care Near Death

    PubMed Central

    Higgins, Philip C.; Prigerson, Holly G.

    2013-01-01

    Purpose End-of-life (EOL) measures are limited in capturing caregiver assessment of the quality of EOL care. Because none include caregiver perception of patient suffering or prolongation of death, we sought to develop and validate the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale to include these dimensions of caregiver-perceived quality of EOL care. Patients and Methods Data were derived from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N = 275 dyads). Caregivers were assessed before and after patient deaths. CEQUEL's factor structure was examined; reliability was evaluated using Cronbach's α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes. Results Factor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52–0.78). 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (ρ = .13; p≤.05) and hospice enrollment (z = −2.09; p≤.05), and negatively associated with bereaved caregiver regret (ρ = −.36, p≤.001) and a diagnosis of Posttraumatic Stress Disorder (z = −2.06; p≤.05). Conclusion CEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment. PMID:23762467

  1. 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. PMID:21398263

  2. 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. PMID:20832980

  3. '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. PMID:22885861

  4. End-of-Life Discussions and Advance Care Planning for Children on Long-Term Assisted Ventilation with Life-Limiting Conditions

    PubMed Central

    Kun, Sheila S.; Graham, Robert J.; Keens, Thomas G.

    2013-01-01

    Families of children with life-limiting conditions who are on long-term assisted ventilation need to undertake end-of-life advance care planning (ACP) in order to align their goals and values with the inevitability of their child's condition and the risks it entails. To discuss how best to conduct ACP in this population, we performed a retrospective analysis of end-of-life discussions involving our deceased ventilator-assisted patients between 1987 and 2009. A total of 34 (72 percent) of 47 study patients were the subject of these discussions; many discussions occurred after acute deterioration. They resulted in directives to forgo or limit interventions for 21 children (45 percent). We surmise that many families were hesitant to discuss end-of-life issues during periods of relative stability. By offering anticipatory guidance and encouraging contemplation of patients’ goals both in times of stability and during worsening illness, health care providers can better engage patients’ families in ACP. As the child's condition progresses, the emphasis can be recalibrated. How families respond to such encouragement can also serve as a gauge of their willingness to pursue ACP. PMID:22582468

  5. 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

  6. 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. PMID:25999611

  7. Burden on family carers and care-related financial strain at the end of life: a cross-national population-based study

    PubMed Central

    Van den Block, Lieve; Pardon, Koen; Miccinesi, Guido; Vega Alonso, Tomás; Boffin, Nicole; Donker, Gé A.; Cancian, Maurizio; López-Maside, Aurora; Onwuteaka-Philipsen, Bregje D.; Deliens, Luc

    2014-01-01

    Background: The rising number of deaths from cancer and other life-limiting illnesses is accompanied by a growing number of family carers who provide long-lasting care, including end-of-life care. This population-based epidemiological study aimed to describe and compare in four European countries the prevalence of and factors associated with physical or emotional overburden and difficulties in covering care-related costs among family carers of people at the end of life. Methods: A cross-national retrospective study was conducted via nationwide representative sentinel networks of general practitioners (GPs). Using a standardized form, GPs in Belgium, The Netherlands, Italy and Spain recorded information on the last 3 months of life of every deceased adult practice patient (1 January 2009–31 December 2010). Sudden deaths were excluded. Results: We studied 4466 deaths. GPs judged family carers of 28% (Belgium), 30% (The Netherlands), 35% (Spain) and 71% (Italy) of patients as physically/emotionally overburdened (P < 0.001). For 8% (Spain), 14% (Belgium), 36% (The Netherlands) and 43% (Italy) patients, GPs reported difficulties in covering care-related costs (P < 0.001). Patients <85 years of age (Belgium, Italy) had higher odds of having physically/emotionally overburdened family carers and financial burden. Death from non-malignant illness (vs. cancer) (Belgium and Italy) and dying at home compared with other locations (The Netherlands and Italy) were associated with higher odds of difficulties in covering care-related costs. Conclusion: In all countries studied, and particularly in Italy, GPs observed a considerable extent of physical/emotional overburden as well as difficulties in covering care-related costs among family carers of people at the end of life. Implications for health- and social care policies are discussed. PMID:24642602

  8. Euthanasia and other end of life decisions and care provided in final three months of life: nationwide retrospective study in Belgium

    PubMed Central

    Deschepper, Reginald; Bilsen, Johan; Bossuyt, Nathalie; Van Casteren, Viviane; Deliens, Luc

    2009-01-01

    Objective To explore the relation between the care provided in the final three months of life and the prevalence and types of end of life decisions in Belgium. Design Two year nationwide retrospective study, 2005-6 (SENTI-MELC study). Setting Data collection via the sentinel network of general practitioners, an epidemiological surveillance system representative of all general practitioners in Belgium. Subjects 1690 non-sudden deaths in practices of the sentinel general practitioners. Main outcome measures Non-sudden deaths of patients (aged >1 year) reported each week. Reported care provided in the final three months of life and the end of life decisions made. Multivariable regression analysis controlled for age, sex, cause, and place of death. Results Use of specialist multidisciplinary palliative care services was associated with intensified alleviation of symptoms (odds ratio 2.1, 95% confidence interval 1.6 to 2.6), continuous deep sedation forgoing food/fluid (2.9, 1.7 to 4.9), and the total of decisions explicitly intended to shorten life (1.5, 1.1 to 2.1) but not with euthanasia or physician assisted suicide in particular. To a large extent receiving spiritual care was associated with higher frequencies of euthanasia or physician assisted suicide than receiving little spiritual care (18.5, 2.0 to 172.7). Conclusions End of life decisions that shorten life, including euthanasia or physician assisted suicide, are not related to a lower use of palliative care in Belgium and often occur within the context of multidisciplinary care. PMID:19643825

  9. Communication Tools for End-of-Life Decision-Making in Ambulatory Care Settings: A Systematic Review and Meta-Analysis

    PubMed Central

    Chung, Han-Oh; Hanvey, Louise; Mbuagbaw, Lawrence; You, John J.

    2016-01-01

    Background Patients with serious illness, and their families, state that better communication and decision-making with healthcare providers is a high priority to improve the quality of end-of-life care. Numerous communication tools to assist patients, family members, and clinicians in end-of-life decision-making have been published, but their effectiveness remains unclear. Objectives To determine, amongst adults in ambulatory care settings, the effect of structured communication tools for end-of-life decision-making on completion of advance care planning. Methods We searched for relevant randomized controlled trials (RCTs) or non-randomized intervention studies in MEDLINE, EMBASE, CINAHL, ERIC, and the Cochrane Database of Randomized Controlled Trials from database inception until July 2014. Two reviewers independently screened articles for eligibility, extracted data, and assessed risk of bias. Grading of Recommendations Assessment, Development, and Evaluation (GRADE) was used to evaluate the quality of evidence for each of the primary and secondary outcomes. Results Sixty-seven studies, including 46 RCTs, were found. The majority evaluated communication tools in older patients (age >50) with no specific medical condition, but many specifically evaluated populations with cancer, lung, heart, neurologic, or renal disease. Most studies compared the use of communication tools against usual care, but several compared the tools to less-intensive advance care planning tools. The use of structured communication tools increased: the frequency of advance care planning discussions/discussions about advance directives (RR 2.31, 95% CI 1.25–4.26, p = 0.007, low quality evidence) and the completion of advance directives (ADs) (RR 1.92, 95% CI 1.43–2.59, p<0.001, low quality evidence); concordance between AD preferences and subsequent medical orders for use or non-use of life supporting treatment (RR 1.19, 95% CI 1.01–1.39, p = 0.028, very low quality evidence, 1

  10. Is Public Communication about End-of-Life Care Helping to Inform All?: Cancer News Coverage in African American vs. Mainstream Media

    PubMed Central

    Fishman, Jess M.; Ten Have, Thomas; Casarett, David

    2014-01-01

    Background Because cancers are a leading cause of death, these diseases receive a great deal of news attention. However, because news media frequently target specific racial or ethnic audiences, some populations may receive different information, and it is unknown whether reporting equally informs all about options for care at the end of life. This study of US news reporting compares “mainstream” (general market) media to African American media, which serves the largest minority group. The specific goal of this study was to determine whether these news media communicate differently about cure-directed cancer treatment and end-of-life alternatives. Methods This content analysis includes 660 cancer news stories from online and print media that target either African American or mainstream audiences. The main outcome measures include whether reporting discussed: adverse events of cancer treatment; cancer treatment failure; cancer death/dying; and end-of-life palliative or hospice care. Results Unadjusted and adjusted analyses indicate that the news stories in the African American media are less likely than those in mainstream media to discuss each of the topics studied. Comparing the proportions of news stories in mainstream vs. African American media , 31.6% vs. 13.6% discussed adverse events (OR 2.92; 95% CI 1.51-5.66; P=0.001); 14.1% vs. 4.2% mentioned treatment failure (OR, 3.79; 95% CI 1.45-9.88; P=0.006); and 11.9% vs. 3.8% focused on death/dying (OR, 3.42; 95% CI 1.39-8.38; P=.007). Lastly, although very few news stories discussed end-of-life hospice or palliative care, all were found in mainstream media (7/396 vs. 0/264). Conclusion The African American news media sampled are less likely than mainstream news media to portray negative cancer outcomes and end-of-life care. Given media's segmented audiences, these findings raise concerns that not all audiences are being informed equally well. Because media content is modifiable, there may be opportunities to

  11. 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

  12. Video May Aid End-of-Life Decision-Making

    MedlinePlus

    ... fullstory_159659.html Video May Aid End-of-Life Decision-Making Brief film helped heart failure patients ... HealthDay News) -- Watching a video about end-of-life care options may help patients with advanced heart ...

  13. Promoting Excellence in End-of-Life Care: lessons learned from a cohort of nursing home residents with advanced Huntington disease.

    PubMed

    Dellefield, Mary E; Ferrini, Rebecca

    2011-08-01

    Huntington disease (HD) is a genetic neurodegenerative disorder that progresses over decades and is ultimately terminal. As HD advances, patients are frequently placed in institutional care settings, including nursing homes and hospices where family, nursing staff, and interdisciplinary team members are challenged to help patients live to their highest potential and die with dignity. Edgemoor, a distinct part of the San Diego County Psychiatric Hospital, is a regional referral facility for patients with HD. Over the past 8 years, we have cared for 53 patients with advanced HD and describe our experiences by presenting their demographic characteristics and the lessons we have learned in caring for them. Ultimately, we found that the Robert Wood Johnson Foundation's Promoting Excellence in End-of-Life Care Initiative provided a meaningful framework for setting clinical priorities. This framework is used to summarize the clinical lessons that nursing staff and interdisciplinary team members learned about caring well for institutionalized individuals with advanced HD. PMID:21796039

  14. Why Is Spiritual Care Infrequent at the End of Life? Spiritual Care Perceptions Among Patients, Nurses, and Physicians and the Role of Training

    PubMed Central

    Balboni, Michael J.; Sullivan, Adam; Amobi, Adaugo; Phelps, Andrea C.; Gorman, Daniel P.; Zollfrank, Angelika; Peteet, John R.; Prigerson, Holly G.; VanderWeele, Tyler J.; Balboni, Tracy A.

    2013-01-01

    Purpose To determine factors contributing to the infrequent provision of spiritual care (SC) by nurses and physicians caring for patients at the end of life (EOL). Patients and Methods This is a survey-based, multisite study conducted from March 2006 through January 2009. All eligible patients with advanced cancer receiving palliative radiation therapy and oncology physician and nurses at four Boston academic centers were approached for study participation; 75 patients (response rate = 73%) and 339 nurses and physicians (response rate = 63%) participated. The survey assessed practical and operational dimensions of SC, including eight SC examples. Outcomes assessed five factors hypothesized to contribute to SC infrequency. Results Most patients with advanced cancer had never received any form of spiritual care from their oncology nurses or physicians (87% and 94%, respectively; P for difference = .043). Majorities of patients indicated that SC is an important component of cancer care from nurses and physicians (86% and 87%, respectively; P = .1). Most nurses and physicians thought that SC should at least occasionally be provided (87% and 80%, respectively; P = .16). Majorities of patients, nurses, and physicians endorsed the appropriateness of eight examples of SC (averages, 78%, 93%, and 87%, respectively; P = .01). In adjusted analyses, the strongest predictor of SC provision by nurses and physicians was reception of SC training (odds ratio [OR] = 11.20, 95% CI, 1.24 to 101; and OR = 7.22, 95% CI, 1.91 to 27.30, respectively). Most nurses and physicians had not received SC training (88% and 86%, respectively; P = .83). Conclusion Patients, nurses, and physicians view SC as an important, appropriate, and beneficial component of EOL care. SC infrequency may be primarily due to lack of training, suggesting that SC training is critical to meeting national EOL care guidelines. PMID:23248245

  15. Involvement of a Case Manager in Palliative Care Reduces Hospitalisations at the End of Life in Cancer Patients; A Mortality Follow-Back Study in Primary Care

    PubMed Central

    van der Plas, Annicka G. M.; Vissers, Kris C.; Francke, Anneke L.; Donker, Gé A.; Jansen, Wim J. J.; Deliens, Luc; Onwuteaka-Philipsen, Bregje D.

    2015-01-01

    Background Case managers have been introduced in primary palliative care in the Netherlands; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner (GP) and home-care nurse. Objectives To compare cancer patients with and without additional support from a case manager on: 1) the patients’ general characteristics, 2) characteristics of care and support given by the GP, 3) palliative care outcomes. Methods This article is based on questionnaire data provided by GPs participating in two different studies: the Sentimelc study (280 cancer patients) and the Capalca study (167 cancer patients). The Sentimelc study is a mortality follow-back study amongst a representative sample of GPs that monitors the care provided via GPs to a general population of end-of-life patients. Data from 2011 and 2012 were analysed. The Capalca study is a prospective study investigating the implementation and outcome of the support provided by case managers in primary palliative care. Data were gathered between March 2011 and December 2013. Results The GP is more likely to know the preferred place of death (OR 7.06; CI 3.47-14.36), the place of death is more likely to be at the home (OR 2.16; CI 1.33-3.51) and less likely to be the hospital (OR 0.26; CI 0.13-0.52), and there are fewer hospitalisations in the last 30 days of life (none: OR 1.99; CI 1.12-3.56 and one: OR 0.54; CI 0.30-0.96), when cancer patients receive additional support from a case manager compared with patients receiving the standard GP care. Conclusions Involvement of a case manager has added value in addition to palliative care provided by the GP, even though the role of the case manager is ‘only’ advisory and he or she does not provide hands-on care or prescribe medication. PMID:26208099

  16. Critically examining diversity in end-of-life family caregiving: implications for equitable caregiver support and Canada’s Compassionate Care Benefit

    PubMed Central

    2012-01-01

    Introduction Family (i.e., unpaid) caregiving has long been thought of as a ‘woman’s issue’, which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers’ experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB). Methods This analysis contributes to a utilization-focused evaluation of Canada’s CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued. Results Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers’ experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference. Conclusions We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced in health policy. Based on

  17. Addressing Spirituality Within the Care of Patients at the End of Life: Perspectives of Patients With Advanced Cancer, Oncologists, and Oncology Nurses

    PubMed Central

    Phelps, Andrea C.; Lauderdale, Katharine E.; Alcorn, Sara; Dillinger, Jennifer; Balboni, Michael T.; Van Wert, Michael; VanderWeele, Tyler J.; Balboni, Tracy A.

    2012-01-01

    Purpose Attention to patients' religious and spiritual needs is included in national guidelines for quality end-of-life care, but little data exist to guide spiritual care. Patients and Methods The Religion and Spirituality in Cancer Care Study is a multi-institution, quantitative-qualitative study of 75 patients with advanced cancer and 339 cancer physicians and nurses. Patients underwent semistructured interviews, and care providers completed a Web-based survey exploring their perspectives on the routine provision of spiritual care by physicians and nurses. Theme extraction was performed following triangulated procedures of interdisciplinary analysis. Multivariable ordinal logistic regression models assessed relationships between participants' characteristics and attitudes toward spiritual care. Results The majority of patients (77.9%), physicians (71.6%), and nurses (85.1%) believed that routine spiritual care would have a positive impact on patients. Only 25% of patients had previously received spiritual care. Among patients, prior spiritual care (adjusted odds ratio [AOR], 14.65; 95% CI, 1.51 to 142.23), increasing education (AOR, 1.26; 95% CI, 1.06 to 1.49), and religious coping (AOR, 4.79; 95% CI, 1.40 to 16.42) were associated with favorable perceptions of spiritual care. Physicians held more negative perceptions of spiritual care than patients (P < .001) and nurses (P = .008). Qualitative analysis identified benefits of spiritual care, including supporting patients' emotional well-being and strengthening patient-provider relationships. Objections to spiritual care frequently related to professional role conflicts. Participants described ideal spiritual care to be individualized, voluntary, inclusive of chaplains/clergy, and based on assessing and supporting patient spirituality. Conclusion Most patients with advanced cancer, oncologists, and oncology nurses value spiritual care. Themes described provide an empirical basis for engaging spiritual issues

  18. A Practical Guide to End of Life Care Sadler Clair A Practical Guide to End of Life Care 216pp £16.79 Open University Press 9780335263561 0335263569 [Formula: see text].

    PubMed

    2016-02-17

    This book looks beyond medical care, and considers a range of issues including legal matters and the processes surrounding death. Each chapter is based on a question which is explored in detail through case studies and activities, encouraging the reader to reflect on their own situation. PMID:26884024

  19. 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. PMID:24991918

  20. 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. PMID:26812457

  1. Family Caregivers Who Would Be Unwilling to Provide Care at the End of Life Again: Findings from the Health Survey for England Population Survey

    PubMed Central

    Johnson, Miriam J.; Allgar, Victoria; Macleod, Una; Jones, Annie; Oliver, Steven; Currow, David

    2016-01-01

    Background Family caregivers provide significant care at the end of life. We aimed to describe caregiver characteristics, and of those unwilling to repeat this role under the same circumstances. Methods Observational study of adults in private households (Health Survey for England [HSE]). Caregiving questions included: whether someone close to them died within past 5 years; relationship to the deceased; provision, intensity and duration of care; supportive/palliative care services used; willingness to care again; able to carry on with life. Comparison between those willing to care again or not used univariable analyses and an exploratory multiple logistic regression. A descriptive comparison with Health Omnibus Survey (Australia) data was conducted. Findings HSE response was 64%. 2167/8861 (25%) respondents had someone close to them die in the previous 5 years. Some level of personal care was provided by 645/8861 (7.3%). 57/632 (9%) former caregivers would be unwilling to provide care again irrespective of time since the death, duration of care, education and income. Younger age (≤65; odds ratio [OR] 2.79; 95% CI 136, 5.74) and use of palliative care services (odds ratio: 1.95, 95% CI: 1.09, 3.48) showed greater willingness to provide care again. Apart from use of palliative care services, findings were remarkably similar to the Australian data. Conclusions A significant group of caregivers would be unwilling to provide care again. Older people and those who had not used palliative care services were more likely to be unwilling to care again. Barriers preventing access for disadvantaged groups need to be overcome. PMID:26809029

  2. 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

  3. ‘It doesn't do the care for you': a qualitative study of health care professionals' perceptions of the benefits and harms of integrated care pathways for end of life care

    PubMed Central

    Sleeman, Katherine E; Koffman, Jonathan; Bristowe, Katherine; Rumble, Caroline; Burman, Rachel; Leonard, Sara; Noble, Jo; Dampier, Odette; Bernal, William; Morgan, Myfanwy; Hopkins, Philip; Prentice, Wendy; Higginson, Irene J

    2015-01-01

    Objectives To understand healthcare professionals’ perceptions of the benefits and potential harms of integrated care pathways for end-of-life care, to inform the development of future interventions that aim to improve care of the dying. Design Qualitative interview study with maximum variation sampling and thematic analysis. Participants 25 healthcare professionals, including doctors, nurses and allied health professionals, interviewed in 2009. Setting A 950-bed South London teaching hospital. Results 4 main themes emerged, each including 2 subthemes. Participants were divided between (1) those who described mainly the benefits of integrated care pathways, and (2) those who talked about potential harms. Benefits focused on processes of care, for example, clearer, consistent and comprehensive actions. The recipients of these benefits were staff members themselves, particularly juniors. For others, this perceived clarity was interpreted as of potential harm to patients, where over-reliance on paperwork lead to prescriptive, less thoughtful care, and an absolution from decision-making. Independent of their effects on patient care, integrated care pathways for dying had (3) a symbolic value: they legitimised death as a potential outcome and were used as a signal that the focus of care had changed. However, (4) a weak infrastructure, including scanty education and training in end-of-life care and a poor evidence base, that appeared to undermine the foundations on which the Liverpool Care Pathway was built. Conclusions The potential harms of integrated care pathways for the dying identified in this study were reminiscent of criticisms subsequently published by the Neuberger review. These data highlight: (1) the importance of collecting, reporting and using qualitative data when developing and evaluating complex interventions; (2) that comprehensive education and training in palliative care is critical for the success of any new intervention; (3) the need for future

  4. Redefining the “Planning” in Advance Care Planning: Preparing for End-of-Life Decision Making

    PubMed Central

    Sudore, Rebecca L.; Fried, Terri R.

    2010-01-01

    The traditional objective of advance care planning has been to have patients make treatment decisions in advance in an attempt to provide care consistent with their goals. We argue that the objective for advance care planning ought to be the preparation of patients and surrogates to participate with clinicians in making the best possible in-the-moment medical decisions. We provide practical steps for clinicians to help patients and surrogate decision makers achieve this objective in the outpatient setting. Preparation for in-the-moment decision making shifts the focus from having patients make premature decisions based on incomplete information to preparing patients and their surrogates for the types of decisions and conflicts they may encounter when they do have to engage in in-the-moment decision making. This approach does not preclude the completion of advance directives, but acknowledges that they are but one piece of information to be used at the time of decision making. PMID:20713793

  5. The living-dying interval in nursing home-based end-of-life care: family caregivers' experiences.

    PubMed

    Waldrop, Deborah P; Kusmaul, Nancy

    2011-11-01

    Guided by concepts from the living-dying interval ( Pattison, 1977 ) this study sought to explore family members' experiences with a dying nursing home resident. In-depth interviews were conducted with 31 caregivers of residents who had died. Interviews were audiotaped and transcribed. Themes that illuminated families' experiences on the living-dying interval were: an acute medical crisis (trigger events, accumulation of stressors, level of care crisis); the living-dying phase (advance care planning, hospitalization, end-stage decisions); and the terminal phase (beginning of the end, awareness of dying). The results illustrate critical periods for social work intervention with families of dying nursing home residents. PMID:22060004

  6. [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. PMID:25068685

  7. 76 FR 35221 - Proposed Collection; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-06-16

    ...-Life Science Palliative Care (EOL PC) Needs Assessment: Funding Source Questionnaire will obtain information on funding sources of EOL PC research published studies for which a funding source is not cited or the information is unclear. Target participants are authors of publically-available EOL PC...

  8. Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important

    PubMed Central

    Virdun, Claudia; Luckett, Tim; Davidson, Patricia M; Phillips, Jane

    2015-01-01

    Background: The majority of expected deaths occur in hospitals where optimal end-of-life care is not yet fully realised, as evidenced by recent reviews outlining experience of care. Better understanding what patients and their families consider to be the most important elements of inpatient end-of-life care is crucial to addressing this gap. Aim and design: This systematic review aimed to ascertain the five most important elements of inpatient end-of-life care as identified by patients with palliative care needs and their families. Data sources: Nine electronic databases from 1990 to 2014 were searched along with key internet search engines and handsearching of included article reference lists. Quality of included studies was appraised by two researchers. Results: Of 1859 articles, 8 met the inclusion criteria generating data from 1141 patients and 3117 families. Synthesis of the top five elements identified four common end-of-life care domains considered important to both patients and their families, namely, (1) effective communication and shared decision making, (2) expert care, (3) respectful and compassionate care and (4) trust and confidence in clinicians. The final domains differed with financial affairs being important to families, while an adequate environment for care and minimising burden both being important to patients. Conclusion: This review adds to what has been known for over two decades in relation to patient and family priorities for end-of-life care within the hospital setting. The challenge for health care services is to act on this evidence, reconfigure care systems accordingly and ensure universal access to optimal end-of-life care within hospitals. PMID:25921707

  9. They know!—Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes

    PubMed Central

    Bollig, Georg; Gjengedal, Eva; Rosland, Jan Henrik

    2015-01-01

    Background: Residents living in long-term care facilities are a vulnerable population. For many residents, a nursing home is their place of death. Palliative care and end-of-life decisions are important components of their care provision. Aim: To study the views of cognitively able residents and relatives on advance care planning, end-of-life care, and decision-making in nursing homes. Design: A qualitative study with in-depth interviews with nursing home residents and focus group interviews with relatives of nursing home residents. Analysis is based on interpretive description. Setting/participants: In total, 43 informants from nine nursing homes participated in the study (25 nursing home residents and 18 relatives). All included residents had capacity to provide informed consent and lived in long-term care. Results: The main findings of this study were the differing views about decision-making and advance care planning of residents and relatives. Residents do trust relatives and staff to make important decisions for them. The relatives are in contrast insecure about the residents’ wishes and experience decision-making as a burden. The majority of the residents had not participated in advance care planning. None of the residents stated challenges connected to end-of-life care or mentioned the wish for euthanasia. Conclusion: Although most residents seem to be satisfied with decision-making and end-of life care, there is a need for systematic advance care planning. Advance care planning could help to explore future wishes for care and ease decision-making for the relatives, physicians, and staff and should be offered to all cognitively able nursing homes residents. PMID:26396227

  10. Physicians' preferences and attitudes about end-of-life care in patients with an implantable cardioverter-defibrillator.

    PubMed

    Sherazi, Saadia; Daubert, James P; Block, Robert C; Jeevanantham, Vinodh; Abdel-Gadir, Khalid; DiSalle, Michael R; Haley, James M; Shah, Abrar H

    2008-10-01

    Clinical guidance is deficient regarding deactivation of implantable cardioverter-defibrillators (ICDs) in patients with terminal illnesses. We hypothesized that many physicians are apprehensive about discussing ICD deactivation with their dying patients. Thus, we conducted an anonymous survey of all the physicians in the Department of Medicine at Unity Health System in Rochester, NY. The survey collected information about the knowledge and preferences of these physicians regarding the medical, ethical, and legal issues involved in caring for patients with an ICD and terminal illness. Of the 204 surveys distributed, 87 (43%) were returned. Among the physicians who responded, 64 (74%) reported experience caring for a patient with an ICD and terminal illness. Forty physicians (46%) either thought it was illegal or were not sure if it was legal to deactivate an ICD in these circumstances. However, if reassured about the legality of discontinuing ICD therapy, 79 (91%) of these same respondents said that they would be willing to discuss voluntary ICD deactivation with their dying patients. With increased knowledge about managing the withdrawal of this potentially life-prolonging therapy, physicians are likely to become more skilled at caring for dying patients with an ICD. PMID:18828973

  11. Rituals at End-of-Life.

    PubMed

    Pace, James C; Mobley, Tyree S

    2016-09-01

    Understanding the significance of rituals at the end-of-life enables health care professionals to offer meaningful and compassionate interventions that enhance quality of life and support those dying and those who grieve. Rituals contribute to the strength, capacity, and health of providers who cope with death events. Rituals help the living create continuing bonds with those dying, help with coping skills, and allow healthy growth through opportunities for naming, honoring, and memorializing. The display of respect and a nonjudgmental attitude create a space for support, trust, sharing of emotion, empowerment, and quality of care during end-of-life events. PMID:27497020

  12. Nursing Roles and Strategies in End-of-Life Decision Making in Acute Care: A Systematic Review of the Literature

    PubMed Central

    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. PMID:21994831

  13. Sequential occurrence of dyspnea at the end of life in palliative care, according to the underlying cancer

    PubMed Central

    Guirimand, Frédéric; Sahut d'izarn, Marine; Laporte, Lucy; Francillard, Marie; Richard, Jean-François; Aegerter, Philippe

    2015-01-01

    Dyspnea is a symptom that severely affects the quality of life of terminally ill patients. Its frequency differs considerably between studies. We aimed to characterize the frequency of dyspnea in a palliative care hospital (PCH) and to identify factors predisposing to dyspnea, particularly during the very last days of life, as a function of the underlying disease. Episodes of dyspnea were identified by the computerized extraction of prospectively collected data from the reports of care assistants or from medical observations recorded in the medical files for all stays at our PCH during the last 6 years. There were 6455 hospital stays, 88% ending in the death of the patient; 13,282 episodes of dyspnea were recorded during 2608 hospital stays (40%). Dyspnea was more frequently observed in cases of cancer than in other conditions (RR = 1.30; 95% CI: 1.14–1.48). Pulmonary metastasis increased the risk of dyspnea from 37% to 51% (RR = 1.37; 95% CI: 1.29–1.46). Dyspnea frequency varied with the primary cancer site, from 24% (brain cancer) to 60% (esophageal cancer). The data for cancer patients staying for more than 6 days who subsequently died indicated that 8% of patients experienced dyspnea exclusively during the last 4 days of the life, independently of the site of the primary cancer. Dyspnea during the last few days of life requires systematic assessment. Exclusively terminal dyspnea should be distinguished from more precocious dyspnea, as the pathophysiological mechanisms and treatments of these two forms are probably different. PMID:25644607

  14. Sequential occurrence of dyspnea at the end of life in palliative care, according to the underlying cancer.

    PubMed

    Guirimand, Frédéric; Sahut d'izarn, Marine; Laporte, Lucy; Francillard, Marie; Richard, Jean-François; Aegerter, Philippe

    2015-04-01

    Dyspnea is a symptom that severely affects the quality of life of terminally ill patients. Its frequency differs considerably between studies. We aimed to characterize the frequency of dyspnea in a palliative care hospital (PCH) and to identify factors predisposing to dyspnea, particularly during the very last days of life, as a function of the underlying disease. Episodes of dyspnea were identified by the computerized extraction of prospectively collected data from the reports of care assistants or from medical observations recorded in the medical files for all stays at our PCH during the last 6 years. There were 6455 hospital stays, 88% ending in the death of the patient; 13,282 episodes of dyspnea were recorded during 2608 hospital stays (40%). Dyspnea was more frequently observed in cases of cancer than in other conditions (RR = 1.30; 95% CI: 1.14-1.48). Pulmonary metastasis increased the risk of dyspnea from 37% to 51% (RR = 1.37; 95% CI: 1.29-1.46). Dyspnea frequency varied with the primary cancer site, from 24% (brain cancer) to 60% (esophageal cancer). The data for cancer patients staying for more than 6 days who subsequently died indicated that 8% of patients experienced dyspnea exclusively during the last 4 days of the life, independently of the site of the primary cancer. Dyspnea during the last few days of life requires systematic assessment. Exclusively terminal dyspnea should be distinguished from more precocious dyspnea, as the pathophysiological mechanisms and treatments of these two forms are probably different. PMID:25644607

  15. 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. PMID:25193016

  16. 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

  17. [The Current Status of End-of-Life Care in ALS: Progress and Personal Experience from the Past Ten Years in the USA].

    PubMed

    Mitsumoto, Hiroshi

    2015-08-01

    End-of-life (EOL) care and management in ALS is one of the least studied subjects within ALS management. In early 2000, Robert Wood Johnson and the ALS Association assembled an advisory committee to develop recommendations for the promotion of excellence during EOL care. We have reviewed this 10-year-old publication1) and describe the progress we have made in 16 different areas of EOL recommendations. Although there are some areas with little progress over the past 10 years, a few areas, particularly those regarding psychosocial management, symptomatic treatments, and ethical issues of EOL, have made major advancements during this time. the statements and recommendations for promoting excellence in EOL made 10 years ago appear to still be valid. We also review hastening death, a newly recognized issue of EOL, and discuss the potential reasons why Japanese and American patients chose tracheostomy-invasive ventilator at different rates. We conclude that EOL management is still evolving and in progress. Until we have a cure for ALS, every effort is being made to improve EOL care for patients with ALS. PMID:26241360

  18. 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

  19. A randomised controlled trial on the efficacy of advance care planning on the quality of end-of-life care and communication in patients with COPD: the research protocol

    PubMed Central

    Houben, Carmen H M; Spruit, Martijn A; Wouters, Emiel F M; Janssen, Daisy J A

    2014-01-01

    Introduction Recent research shows that advance care planning (ACP) for patients with chronic obstructive pulmonary disease (COPD) is uncommon and poorly carried out. The aim of the present study was to explore whether and to what extent structured ACP by a trained nurse, in collaboration with the chest physician, can improve outcomes in Dutch patients with COPD and their family. Methods and analysis A multicentre cluster randomised controlled trial in patients with COPD who are recently discharged after an exacerbation has been designed. Patients will be recruited from three Dutch hospitals and will be assigned to an intervention or control group, depending on the randomisation of their chest physician. Patients will be assessed at baseline and after 6 and 12 months. The intervention group will receive a structured ACP session by a trained nurse. The primary outcomes are quality of communication about end-of-life care, symptoms of anxiety and depression, quality of end-of-life care and quality of dying. Secondary outcomes include concordance between patient's preferences for end-of-life care and received end-of-life care, and psychological distress in bereaved family members of deceased patients. Intervention and control groups will be compared using univariate analyses and clustered regression analysis. Ethics and dissemination Ethical approval was received from the Medical Ethical Committee of the Catharina Hospital Eindhoven, the Netherlands (NL42437.060.12). The current project provides recommendations for guidelines on palliative care in COPD and supports implementation of ACP in the regular clinical care. Clinical trial registration number NTR3940. PMID:24384905

  20. End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of care.

    PubMed

    Ullrich, Christina K; Dussel, Veronica; Hilden, Joanne M; Sheaffer, Jan W; Lehmann, Leslie; Wolfe, Joanne

    2010-05-13

    The end-of-life (EOL) experience of children who undergo stem cell transplantation (SCT) may differ from that of other children with cancer. To evaluate perspectives and patterns of EOL care after SCT, we surveyed 141 parents of children who died of cancer (response rate, 64%) and their physicians. Chart review provided additional information. Children for whom SCT was the last cancer therapy (n = 31) were compared with those for whom it was not (n = 110). SCT parents and physicians recognized no realistic chance for cure later than non-SCT peers (both P < .001) and were more likely to have a primary goal of cure at death (parents, P < .001; physicians, P = .02). SCT children were more likely to suffer highly from their last cancer therapy and die in the intensive care unit (both P < .001), with less opportunity for EOL preparation. SCT parents who recognized no realistic chance for cure more than 7 days before death along with the physician were more likely to prepare for EOL, and if their primary goal was to reduce suffering, to achieve this (P < .001). SCT is associated with significant suffering and less opportunity to prepare for EOL. Children and families undergoing SCT may benefit from ongoing discussions regarding prognosis, goals, and opportunities to maximize quality of life. PMID:20228275

  1. A Legal and Ethical Analysis of the Effects of Triggering Conditions on Surrogate Decision-Making in End-of-Life Care in the US.

    PubMed

    Clint Parker, J; Goldberg, Daniel S

    2016-03-01

    The central claim of this paper is that American states' use of so-called "triggering conditions" to regulate surrogate decision-making authority in end-of-life care leaves unresolved a number of important ethical and legal considerations regarding the scope of that authority. The paper frames the issue with a case set in a jurisdiction in which surrogate authority to withdraw life-sustaining treatment is triggered by two specific clinical conditions. The case presents a quandary insofar as the clinical facts do not satisfy the triggering conditions, and yet both the appropriate surrogates and the care team agree that withdrawal of life-sustaining treatment is in the best interest of the patient. The paper surveys applicable law across the 50 states and weighs the arguments for and against the inclusion of such triggering conditions in relevant legal regimes. The paper concludes by assessing the various legal and policy options states have for regulating surrogate decision-making authority in light of the moral considerations (including epistemic difficulties), and notes the possibility for conflict within ethics teams arising from the potential tension between prudence, risk-aversion, and moral obligation. PMID:26084270

  2. 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

    2016-01-01

    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

  3. Administering anticipatory medications in end-of-life care: A qualitative study of nursing practice in the community and in nursing homes

    PubMed Central

    Morbey, Hazel; Brown, Jayne; Payne, Sheila; Seale, Clive; Seymour, Jane

    2015-01-01

    Background: In the United Kingdom, an approach to improving end-of-life care has been the introduction of ‘just in case’ or ‘anticipatory’ medications. Nurses are often responsible for deciding when to use anticipatory medications, but little is known about their experiences. Aim: To examine nurses’ decisions, aims and concerns when using anticipatory medications. Design: An ethnographic study in two UK regions, using observations and interviews with nurses working in community and nursing home teams (n = 8). Findings: Observations (n = 83) and interviews (n = 61) with community nurses. Nurses identified four ‘conditions’ that needed to be established before they implemented anticipatory medications: (1) irreversibility; (2) inability to take oral medication; (3) where the patient was able, they should consent and (4) decision had to be independent of demands or requests from patient’s relatives. By using anticipation medications, nurses sought to enable patients to be ‘comfortable and settled’ by provision of gradual relief of symptoms at the lowest dose possible. They aimed to respond quickly to needs, seeking to avoid hospital admission or medical call-out, while adhering to local prescribing policies. Worries included distinguishing between pain and agitation, balancing risks of under- and over-medication and the possibility of hastening death. Conclusion: Nurses take a leading role in the administration of anticipatory medications. Nurses apply consideration and caution to the administration of anticipatory medications but some experience emotional burden. Education, training and experience played a role in the nurses’ confidence and should continue to be central to efforts to improving the quality of palliative care in the community and nursing homes. PMID:25070861

  4. 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

  5. Making decisions at the end of life when caring for a person with dementia: a literature review to explore the potential use of heuristics in difficult decision-making

    PubMed Central

    Mathew, R; Davies, N; Manthorpe, J; Iliffe, S

    2016-01-01

    Objective Decision-making, when providing care and treatment for a person with dementia at the end of life, can be complex and challenging. There is a lack of guidance available to support practitioners and family carers, and even those experienced in end of life dementia care report a lack of confidence in decision-making. It is thought that the use of heuristics (rules of thumb) may aid decision-making. The aim of this study is to identify whether heuristics are used in end of life dementia care, and if so, to identify the context in which they are being used. Design A narrative literature review was conducted taking a systematic approach to the search strategy, using the Centre for Reviews and Dissemination guidelines. Rapid appraisal methodology was used in order to source specific and relevant literature regarding the use of heuristics in end of life dementia care. Data sources A search using terms related to dementia, palliative care and decision-making was conducted across 4 English language electronic databases (MEDLINE, EMBASE, PsycINFO and CINAHL) in 2015. Results The search identified 12 papers that contained an algorithm, guideline, decision tool or set of principles that we considered compatible with heuristic decision-making. The papers addressed swallowing and feeding difficulties, the treatment of pneumonia, management of pain and agitation, rationalising medication, ending life-sustaining treatment, and ensuring a good death. Conclusions The use of heuristics in palliative or end of life dementia care is not described in the research literature. However, this review identified important decision-making principles, which are largely a reflection of expert opinion. These principles may have the potential to be developed into simple heuristics that could be used in practice. PMID:27436665

  6. 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

  7. [End of life and vulnerability, a public health issue].

    PubMed

    Boucomont, Aude

    2016-02-01

    End of life and precarity, two words which were linked by the French national observatory for end of life care in its work carried out in 2014. The study provided an overview of current support practices in different areas, highlighting certain lessons to be learned and making recommendations to the different partners involved. PMID:26861080

  8. Concepts and Definitions for “Actively Dying,” “End of Life,” “Terminally Ill,” “Terminal Care,” and “Transition of Care”: A Systematic Review

    PubMed Central

    Hui, David; Nooruddin, Zohra; Didwaniya, Neha; Dev, Rony; De La Cruz, Maxine; Kim, Sun Hyun; Kwon, Jung Hye; Hutchins, Ronald; Liem, Christiana; Bruera, Eduardo

    2013-01-01

    Context The terms “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care” are commonly used but rarely and inconsistently defined. Objectives We conducted a systematic review to examine the concepts and definitions for these terms. Methods We searched MEDLINE, PsycINFO, Embase, and CINAHL for published peer-reviewed articles from 1948 to 2012 that conceptualized, defined, or examined these terms. Two researchers independently reviewed each citation for inclusion and then extracted the concepts/definitions when available. We also searched 10 dictionaries, four palliative care textbooks, and 13 organization Web sites, including the U.S. Federal Code. Results One of 16, three of 134, three of 44, two of 93, and four of 17 articles defined or conceptualized actively dying, end of life, terminally ill, terminal care, and transition of care, respectively. Actively dying was defined as “hours or days of survival.” We identified two key defining features for end of life, terminally ill, and terminal care: life-limiting disease with irreversible decline and expected survival in terms of months or less. Transition of care was discussed in relation to changes in 1) place of care (e.g., hospital to home), 2) level of professions providing the care (e.g., acute care to hospice), and 3) goals of care (e.g., curative to palliative). Definitions for these five terms were rarely found in dictionaries, textbooks, and organizational Web sites. However, when available, the definitions were generally consistent with the concepts discussed previously. Conclusion We identified unifying concepts for five commonly used terms in palliative care and developed a preliminary conceptual framework toward building standardized definitions. PMID:23796586

  9. [Volunteer support at home, at the end of life].

    PubMed

    de Baudus, Sabine

    2015-11-01

    Volunteers work alongside nurses providing social support to people at the end of life at home. As partners in the patient management, they can contribute to finding innovative solutions and are important players in the "shared caring". PMID:26567078

  10. [10 years after implementation of the Liverpool Care Pathway for the dying patient; important improvements in end-of-life care].

    PubMed

    Geijteman, Eric C T; Dekkers, Anneke G W M; van Zuylen, Lia

    2013-01-01

    The Liverpool Care Pathway for the dying patient (LCP) is a quality instrument that contributes to the quality of care of dying patients. The pathway provides care goals for structuring the multidisciplinary care of patients who are in the last hours or days of life and their families. The LCP should be used as soon as the multidisciplinary team recognises that the patient's death within hours or days is imminent. Research has shown that using the pathway contributes to better symptom control in the patient and improved coping with grief by relatives, among other things. At this time, the Dutch version of the LCP ('Zorgpad Stervensfase') has been implemented in over 100 healthcare institutions in the Netherlands. A digital version of the LCP is under construction, which makes it possible to integrate it in electronic patient files. This digital version will also stimulate quality assurance and scientific research. PMID:24020622

  11. Valuing QALYs at the end of life.

    PubMed

    Pinto-Prades, Jose-Luis; Sánchez-Martínez, Fernando-Ignacio; Corbacho, Belen; Baker, Rachel

    2014-07-01

    The possibility of weighting QALYs differently for different groups of patients has been a source of debate. Most recently, this debate has been extended to the relative value of QALYs at the end of life (EoL). The objective of this study is to provide evidence of societal preferences in relation to this topic. Three cross-sectional surveys were conducted amongst Spanish general population (n = 813). Survey 1 compared increases in life expectancy for EoL patients with health gains from temporary health problems. Survey 2 compared health gains for temporary health problems with quality of life gains at the EoL (palliative care). Survey 3 compared increases in life expectancy with quality of life gains, both for EoL patients. Preferences were elicited using Person Trade-Off (PTO) and Willingness to pay (WTP) techniques presenting two different durations of health benefit (6 and 18 months). Health benefits, measured in QALYs, were held constant in all comparisons. In survey 1 mean WTP was higher for life extending treatments than for temporary health problems and the majority of respondents prioritised life extension over temporary health problems in response to the PTO questions. In survey 2 mean WTP was higher for palliative care than for temporary health problems and 83% prioritized palliative care (for both durations) in the PTO questions. In survey 3 WTP values were higher for palliative care than for life extending treatments and more than 60% prioritized palliative care in the PTO questions. Our results suggest that QALYs gained from EoL treatments have a higher social value than QALYs gained from treatments for temporary health problems. Further, we found that people attach greater weight to improvements in quality of life than to life extension at the end of life. PMID:24820408

  12. Integrating professional apprentices into an end-of-life course.

    PubMed

    Hold, Judith L; Ward, Elizabeth N; Blake, Barbara J

    2014-02-01

    Nursing education faces several challenges in providing quality and meaningful education. Providing such an education is most important in teaching end-of-life care, as nurses are pivotal in helping patients to achieve a good death. A good death is often based on physical comfort, preparation for death, and completion of social and emotional tasks. Many obstacles hinder a patient's wishes about dying, including how nurses perceive their role in end-of-life care situations and knowing how to intervene on behalf of the patient. Therefore, nursing education needs to create meaningful and relevant learning experiences to enable future nurses to effectively care for the dying patient. To this endeavor, the Palliative and End-of-Life Care course described in this article integrated knowledge through the use of three professional apprenticeships: (a) acquiring and using knowledge and science (cognitive), (b) using clinical reasoning and skilled know-how (practice), and (c) ethical comportment and formation (moral reasoning). PMID:24444009

  13. What works in ‘real life’ to facilitate home deaths and fewer hospital admissions for those at end of life?: results from a realist evaluation of new palliative care services in two English counties

    PubMed Central

    2014-01-01

    Background We evaluated end of life care services in two English counties including: coordination centres, telephone advice line, ‘Discharge in Reach’ nurses, a specialist community personal care team and community nurse educators. Elsewhere, we published findings detailing high family carer satisfaction and fewer hospital admissions, Accident and Emergency attendances and hospital deaths for service users compared to controls. The aim of this paper is to discuss what contributed to those outcomes. Methods Using realist evaluation, data collection included documentation (e.g. referral databases), 15 observations of services and interviews with 43 family carers and 105 professionals. Data were analysed using framework analysis, applying realist evaluation concepts. Findings were discussed at successive team meetings and further data was collected until team consensus was reached. Results Services ‘worked’ primarily for those with cancer with ‘fast track’ funding who were close to death. Factors contributing to success included services staffed with experienced palliative care professionals with dedicated (and sufficient) time for difficult conversations with family carers, patients and/or clinical colleagues about death and the practicalities of caring for the dying. Using their formal and informal knowledge of the local healthcare system, they accessed community resources to support homecare and delivered excellent services. This engendered confidence and reassurance for staff, family carers and patients, possibly contributing to less hospital admissions and A&E attendances and more home deaths. Conclusions With demand for 24-hour end of life care growing and care provision fragmented across health and social care boundaries, services like these that cut across organisational sectors may become more important. They offer an overview to help navigate those desiring a home death through the system. PMID:25075202

  14. When communication fails: resolving end-of-life impasses.

    PubMed

    Davenport, Lisa Z; Schopp, Georgeanne

    2014-06-01

    Various protocols and advance directives can prepare physician assistants for difficult conversations with patients about end-of-life care. This case scenario explores the roles and influences that complicated one patient's care and how the situation was resolved. PMID:24853152

  15. Palliative Care Symptom Assessment for Patients with Cancer in the Emergency Department: Validation of the Screen for Palliative and End-of-Life Care Needs in the Emergency Department Instrument

    PubMed Central

    Richards, Christopher T.; Chang, Chih-Hung; Courtney, D. Mark; Engel, Kirsten G.; Emanuel, Linda; Quest, Tammie

    2011-01-01

    Abstract Objective We sought to develop and validate a novel palliative medicine needs assessment tool for patients with cancer in the emergency department. Methods An expert panel trained in palliative medicine and emergency medicine reviewed and adapted a general palliative medicine symptom assessment tool, the Needs at the End-of-Life Screening Tool. From this adaptation a new 13-question instrument was derived, collectively referred to as the Screen for Palliative and End-of-life care needs in the Emergency Department (SPEED). A database of 86 validated symptom assessment tools available from the palliative medicine literature, totaling 3011 questions, were then reviewed to identify validated test items most similar to the 13 items of SPEED; a total of107 related questions from the database were identified. Minor adaptations of questions were made for standardization to a uniform 10-point Likert scale. The 107 items, along with the 13 SPEED items were randomly ordered to create a single survey of 120 items. The 120-item survey was administered by trained staff to all patients with cancer who met inclusion criteria (age over 21 years, English-speaking, capacity to provide informed consent) who presented to a large urban academic emergency department between 8:00 am and 11:00 pm over a 10-week period. Data were analyzed to determine the degree of correlation between SPEED items and the related 107 selected items from previously validated tools. Results A total of 53 subjects were enrolled, of which 49 (92%) completed the survey in its entirety. Fifty-three percent of subjects were male, age range was 24–88 years, and the most common cancer diagnoses were breast, colon, and lung. Cronbach coefficient α for the SPEED items ranged from 0.716 to 0.991, indicating their high scale reliability. Correlations between the SPEED scales and related assessment tools previously validated in other settings were high and statistically significant. Conclusion The SPEED

  16. Better endings: a review of end-of-life services.

    PubMed

    Lamont, Tara; Richardson, Alison

    The NHS has undertaken research on the organisation and quality of end-of-life services, which provides valuable insights for those planning and delivering care for people approaching the end of life, and their families. The review of the findings, structured around the right care in the right place at the right time, highlights what is already known, and how research that is currently underway will address key gaps and uncertainties for frontline staff and clinical leaders. This article summarises the findings outlined in that review. PMID:27180460

  17. [The end of life of patients with dementia].

    PubMed

    Strubel, Denise; Hoffet-Guillo, Françoise

    2004-09-01

    The end of life among patients affected by dementia may occur at any stage of the disease. It has an influence on care, nursing team and family. Death usually results from associated pathologies, mainly cardio-vascular and infectious diseases. Pain must be carefully searched for because its expression is altered by dementia. The measurement of pain is based on behavior scales such as the Doloplus 2 scale. End-of-life care for demented patients leads to many ethical questions, specific to palliative situations. Medical decisions can be difficult to take because both excessive care and lack of must be avoided. Nursing and relation-care must be perfect, even when the patient no longer communicates. Families also need assistance. Mobile palliative care teams are useful. The most important thing is to keep the value of caring. PMID:15689334

  18. Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK

    PubMed Central

    Noble, B; King, N; Woolmore, A; Hughes, P; Winslow, M; Melvin, J; Brooks, J; Bravington, A; Ingleton, C; Bath, PA

    2015-01-01

    The Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) is a UK, medical consultant-led, multidisciplinary team aiming to provide round-the-clock advice and care, including specialist interventions, in the home, community hospitals and care homes. Of 389 referrals in 2010/11, about 85% were for cancer, from a population of about 155 000. Using a mixed method approach, the evaluation comprised: a retrospective analysis of secondary-care use in the last year of life; financial evaluation of the MMSPCS using an Activity Based Costing approach; qualitative interviews with patients, carers, health and social care staff and MMSPCS staff and volunteers; a postal survey of General Practices; and a postal survey of bereaved caregivers using the MMSPCS. The mean cost is about 3000 GBP (3461 EUR) per patient with mean cost of interventions for cancer patients in the last year of life 1900 GBP (2192 EUR). Post-referral, overall costs to the system are similar for MMSPCS and hospice-led models; however, earlier referral avoided around 20% of total costs in the last year of life. Patients and carers reported positive experiences of support, linked to the flexible way the service worked. Seventy-one per cent of patients died at home. This model may have application elsewhere. PMID:24735122

  19. 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

    2016-05-01

    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. PMID:27149104

  20. 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…

  1. 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

  2. The impact of personal loss on the experience of health professions: graduate students in end-of-life and bereavement care.

    PubMed

    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 palliative care. Personal experience with death of a family member or close friend was reported in 80% of the 35 participating students. Findings suggest that grief and the students' construction of the meaning of their loss can mediate the students' developing sense of self as a professional helper. Active engagement with suffering persons, the opportunity for self-disclosure and reflection, and teacher-facilitator provision of emotional guidance and modeling contributed positively to learning. PMID:24501851

  3. “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

  4. Making a difference in end-of-life decisions.

    PubMed

    Danko, Helen

    2004-01-01

    In summary, this process is painful for family and caregivers, particularly after an extended relationship as the one experienced above. It requires a strong commitment on the part of the health care team who embrace a dignified end-of-life process and the decisions that must be made. The health care team that cared so well for S.R. in life was able to assist and be part of his dignified closure. PMID:15453241

  5. 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…

  6. 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…

  7. 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. PMID:27277710

  8. [Implantable cardioverter-defibrillator at the end of life].

    PubMed

    Pfeiffer, D; Hagendorff, A; Kühne, C; Reinhardt, S; Klein, N

    2015-06-01

    Brady- and tachyarrhythmias at the end of life are common observations. Implantable cardioverter-defibrillators answer with antibrady and antitachycardia pacing, which will not be associated with any complaints of the dying patient. In contrast, defibrillation and cardioversion shocks are extremely painful. Therefore shocks should be inactivated at the end of life. Family doctors, internists, emergency physicians and paramedics are unable to inactivate shocks. Deactivation of shocks at the end of life is not comparable to euthanasia or assisted suicide, but allow the patient to die at the end of an uncurable endstage disease. Deactivation of shocks should be discussed with the patient before initial implantation of the devices. The precise moment of the inactivation at the end of life should be discussed with patients and relatives. There is no common recommendation for the time schedule of this decision; therefore it should be based on the individual situation of the patient. Emergency health care physicians need magnets and sufficient information to inactivate defibrillators. The wishes of the patient have priority in the decision process and should be written in the patient's advance directive, which must be available in the final situation. However the physician must not necessarily follow every wish of the patient. As long as the laws in the European Union are not uniform, German recommendations are needed. PMID:26001358

  9. Role of children in end-of-life treatment planning among Korean American older adults.

    PubMed

    Ko, Eunjeong; Berkman, Cathy S

    2010-01-01

    Three focus groups (n = 23) with Korean American older adults explored the role of culture in end-of-life decision making. No participants had completed an advance directive and few had discussed end-of-life treatment preferences. Focus group themes addressed: (a) whether children are resistant or receptive to discussing their parents' end-of-life treatment preferences; (b) whether the older adults or their children should make decisions about end-of-life treatment; (c) whether decision making should be the responsibility of the eldest son or of all the children; and (d) whether children would implement the parent's preferences for end-of-life treatment. Understanding the role of children in end-of-life decision making among Korean American older adults is important for culturally competent care. PMID:21132598

  10. 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…

  11. 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. PMID:25562214

  12. End-of-life practices at a Lebanese hospital: courage or knowledge?

    PubMed

    Gebara, Jouhayna; Tashjian, Hera

    2006-10-01

    End-of-life care requires knowledgeable and culturally sensitive clinicians to assist patients and families dealing with the difficult journey of death. The authors present important end-of-life considerations for health care providers dealing with culturally diversified patients. A case study approach is used illustrating two case vignettes derived from the practice of an intensive care setting of a tertiary teaching facility in a large urban area in Lebanon. In a multidisciplinary fashion, practices of end of life were explored and a protocol developed to guide health care providers. Special cultural values were identified such as importance of family involvement and religious beliefs. Implications for practice are described. PMID:16946121

  13. [Nutrition and hydration at the end of life].

    PubMed

    Devalois, Bernard; Broucke, Marion

    2015-04-01

    At the end of life the pleasure function of alimentation is to be preferred to its nutritive function. Artificial nutrition and hydration in an enteral or parenteral way are artificial life support techniques. Artificial nutrition and hydration are systematically justified for patients in curative phase that require it but not for patients in a terminal or agonal phase. The fear of death from hunger and thirst is not justified. It is more relevant of a symbolic and phantasmic dimension than of an objective reality. The practice of oral care is much more effective than installing an artificial hydration to improve the comfort of a patient at the very end of life. Withdrawing or withholding an artificial nutrition and hydration can prevent an unreasonable obstinacy prohibited by law. PMID:25823829

  14. Guardianship and End-of-Life Decision Making.

    PubMed

    Cohen, Andrew B; Wright, Megan S; Cooney, Leo; Fried, Terri

    2015-10-01

    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 official has no preexisting 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. Physicians 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. However, physicians 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 to characterize the authority of a guardian over choices about end-of-life treatment. We found that most state guardianship statutes have no language about end-of-life decisions. We identified 5 legal cases during the past decade that addressed a guardian's authority over these decisions, and only 1 case provided a broad framework applicable to clinical practice. Work to improve end-of-life decision making by guardians may benefit from a multidisciplinary effort to develop comprehensive standards to guide clinicians and guardians when treatment decisions need to be made. PMID:26258634

  15. How Can an Emergency Department Assist Patients and Caregivers at the End of Life?

    MedlinePlus

    ... Assist in the recognition and understanding of the natural changes associated with the end of life and ... of life to attempt the reversal of the natural death process and seek care starting in the ...

  16. End of Life: A Family Narrative

    PubMed Central

    Black, Helen K.; Moss, Miriam S.; Rubinstein, Robert L.; Moss, Sidney Z.

    2011-01-01

    This paper is based on ethnographic research that examines family reaction to an elderly husband and father's end of life. From a group of 30 families in our study (family defined as a widow aged 70 and over and two adult biological children between the ages of 40 and 60), we offer an extreme case example of family bereavement. We report our findings through the open-ended responses of a widow and two children who were interviewed ten months after the death of the husband and father. Three general themes emerged: (1) how the family imputes meaning to the end of life, (2) changes in the roles of family members, and (3) the family's ways of coping with the death, particularly through their belief system. A key finding is that the meaning family members find in their loved one's death is tied to the context of his death (how and where he died), their perception of his quality of life as a whole, and their philosophical, religious, and spiritual beliefs about life, death, and the afterlife that are already in place. PMID:21629740

  17. Relational dialectics theory: Disentangling physician-perceived tensions of end-of-life communication.

    PubMed

    Amati, Rebecca; Hannawa, Annegret F

    2014-01-01

    Existing literature evidences the centrality of interpersonal communication during end-of-life care, but several barriers currently compromise its effectiveness. One of them is a common lack of communication skills among physicians in this challenging context. Several strategies have been suggested to enhance end-of-life interactions; however, a solid theoretical framework is needed for the development of effective systematic guidelines and interventions that can facilitate this goal. The present research study addresses this gap, choosing to focus particularly on the physician's perspective. It relies on Baxter and Montgomery's (1996) Relational Dialectics Theory to illuminate the complexity of reality doctors commonly face in interactions with their patients during end-of-life care. Semistructured interviews were conducted with 11 physicians in a southern canton of Switzerland who had experienced at least one end-of-life encounter with a patient. The interviews probed whether and under what conditions Baxter and Montgomery's theoretical contradictions translate to physicians' end-of-life communication with their patients and the patients' family members. The results replicated and extended the original theoretical contradictions, evidencing that Relational Dialectics Theory is very applicable to end-of-life conversations. Thus, this study adds a theoretically framed, empirically grounded contribution to the current literature on the communicative challenges physicians commonly face during end-of-life interactions with their patients and their patients' family members. PMID:24345181

  18. Gross Hematuria: Assessment and Management at the End of Life

    PubMed Central

    Groninger, Hunter; Phillips, Jayne M.

    2013-01-01

    A distressing complication for patients and families, gross hematuria at the end of life challenges hospice and palliative care clinicians to utilize skills in medical and nursing management, communication and clarification of patient goals, and relief of symptom burden. Massive hemorrhage in the genitourinary tract can radically alter the terminal trajectory for patients and necessitate intensive interventions aimed at promoting comfort. Here, a case of gross hematuria in an adult hospice patient serves to broaching decision-making challenges and management strategies. PMID:24826082

  19. Bedside nurse involvement in end-of-life decision making: a brief review of the literature.

    PubMed

    Erickson, Jodi

    2013-01-01

    Bedside nurses in the critical care setting deal with death on a regular basis. Historically, end-of-life decision making has been addressed by physicians with the family and patient, yet nurses may be a better resource for families during the decision-making process. The purpose of this article was to provide a brief review of literature surrounding end-of-life decision making. As patient advocates, nurses should be more actively involved with facilitating the end-of-life decision-making process for critically ill patients and their families. PMID:23388862

  20. 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. PMID:25124983

  1. Elderly Patients Get Unnecessary End-Of-Life Treatments

    MedlinePlus

    ... 159579.html Elderly Patients Get Unnecessary End-of-Life Treatments Family members may pressure doctors to attempt ... of old age often receive unnecessary end-of-life medical treatments in hospitals, a new global study ...

  2. 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

  3. Evaluating an end-of-life curriculum in a medical residency program.

    PubMed

    Yacht, Andrew C; Suglia, Shakira Franco; Orlander, Jay D

    The ability to meet patient needs at the end of life is important. Boston University Residency Program in Medicine initiated a 1-week-long end-of-life curriculum that included a hospice care orientation, core articles, and home hospice visits. Evaluated was the impact of the rotation on participant knowledge and attitude. Knowledge was assessed by pretest and posttest questionnaires and compared with more senior resident controls, naïve to the curriculum. Attitudes toward issues relating to end-of-life care and subjective change in knowledge were assessed comparing subjects' retrospective preintervention and postintervention responses included in the postintervention questionnaire. Forty-five second-year participants completed both questionnaires. Participants demonstrated significant improvements in attitude and self-assessed knowledge of end-of-life care in 23 of 24 Likert-type scale questions. The end-of-life curriculum led to significant improvements in participant knowledge and attitudes about the conceptual and practical aspects of end-of-life care. The structure of the rotation should be reproducible in many locales. PMID:17210997

  4. 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.

  5. SVN 9 End-Of-Life testing

    NASA Astrophysics Data System (ADS)

    Hatten, Gregory E.

    1995-05-01

    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.

  6. 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,…

  7. Developmental and Contextual Correlates of Elders' Anticipated End-of-Life Treatment Decisions

    ERIC Educational Resources Information Center

    Decker, Ilene M.; Reed, Pamela G.

    2005-01-01

    The purpose of this study was to gain insight into developmental and contextual correlates of the aggressiveness in treatment that community-based elders anticipate they will desire at the end of life. Elders completed questionnaires to measure 4 developmental factors (integrated moral reasoning, self-transcendence, past experience with…

  8. Examining End-of-Life Case Management: Systematic Review

    PubMed Central

    Thomas, Roger E.; Wilson, Donna M.; Birch, Stephen

    2014-01-01

    Case management was initiated in the 1970s to reduce care discontinuity. A literature review focused on end-of-life (EOL) case management identified 17 research articles, with content analysis revealing two themes: (a) seeking to determine or establish the value of EOL case management and (b) identifying ways to improve EOL case management. The evidence, although limited, suggests that EOL case management is helpful to dying individuals and their families. Research is needed to more clearly illustrate its usefulness or outcomes and the extent of need for it and actual availability. Among other benefits, EOL case management may help reduce hospital utilization, a major concern with the high cost of hospital-based care and the increased desire for home-based EOL care. PMID:24999433

  9. Model for the First NIH-funded Center of Excellence in End-of-Life Research

    PubMed Central

    Keenan, Gail M.; Kavanaugh, Karen; Wilkie, Diana J.; Bonner, Gloria; Ryan, Catherine; Fischer, Dena J.; Savage, Teresa; Choi, Heeseung; Burgener, Sandy C.; Foreman, Marquis D.; Yan, Han

    2013-01-01

    Centers of excellence are widely acknowledged as a mechanism to promote scientific advances in a particular field of science, but until recently there have been no end-of-life or palliative care research centers funded by the National Institutes of Health (NIH). The purpose of this article is to describe aims, framework, and organizational structure of the first NIH-funded Center of Excellence on end-of-life research, the Center for End-of-Life Transition Research (CEoLTR), and the advances in end-of-life research that the CEoLTR will facilitate. The teams of researchers involved in the CEoLTR have grown impressively since it was funded in 2007. Collectively, the teams are on target to accomplish all of the original goals for this five year award. PMID:23762014

  10. 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

  11. Consent and end of life decisions

    PubMed Central

    Harris, J.

    2003-01-01

    This paper discusses the role of consent in decision making generally and its role in end of life decisions in particular. It outlines a conception of autonomy which explains and justifies the role of consent in decision making and criticises some misapplications of the idea of consent, particular the role of fictitious or "proxy" consents. Where the inevitable outcome of a decision must be that a human individual will die and where that individual is a person who can consent, then that decision is ethical if and only if the individual consents. In very rare and extreme cases such a decision will be ethical in the absence of consent where it would be massively cruel not to end life in order to prevent suffering which is in no other way preventable. Where, however, the human individual is not a person, as is the case with abortion, the death of infants like Mary (one of the conjoined twins in a case discussed in the paper), or in the very rare and extreme cases of those who have ceased to be persons like Tony Bland, such decisions are governed by the ethics of ending the lives of non-persons. PMID:12569187

  12. Staffing for end of life: challenges and opportunities.

    PubMed

    Douglas, Kathy S

    2012-01-01

    What would staffing look like if we committed to end-of-life experiences that were designed to honor the needs of the person dying, their loved ones, and the needs of the nurses and care team involved in the dying experience? When we think about the experience of death in a health care setting, it is essential we look at the needs of both patients and caregivers. Attending to the needs of patients and their families facing death, even if well defined, can be difficult to design into staffing plans and budgets in a way that would not put an organization at further financial risk. If we are going to commit to staffing practices that honor dying, in all it's dimensions and for all who are potentially impacted, we will most likely have to step outside traditional thinking to find answers. PMID:22849016

  13. Advance end-of-life treatment planning. A research review.

    PubMed

    Miles, S H; Koepp, R; Weber, E P

    1996-05-27

    The year 1996 marks the fifth anniversary of the federal Patient Self-Determination Act. The Patient Self-Determination Act required hospitals, nursing homes, and health plans to ask whether patients have advance directives and to incorporate them into the medical record. A "living will" is an advance directive by which a person tells caregivers the circumstances in which life-sustaining treatment is to be provided or forgone if the patient is unable to communicate. A "durable power of attorney for health care" enables one to designate a person to speak on his or her behalf if the author loses decision-making capacity. "Advance planning" is the process of reflection, discussion, and communication of treatment preferences for end-of-life care that precedes and may lead to an advance directive. PMID:8638992

  14. Oncologists' Strategies and Barriers to Effective Communication About the End of Life

    PubMed Central

    Granek, Leeat; Krzyzanowska, Monika K.; Tozer, Richard; Mazzotta, Paolo

    2013-01-01

    Purpose: Communicating about the end of life with patients has been reported as one of the most difficult and stressful part of the work of oncologists. Despite this fact, oncologists receive little training in this area, and many do not communicate effectively with patients. The purpose of this analysis, part of a larger study examining oncologists' experiences of patient loss, was to explore oncologists' communication strategies and communication barriers when discussing end-of-life issues with patients. Methods: Twenty oncologists were interviewed at three hospitals about their communication strategies on end-of-life issues with patients. The data were analyzed using the grounded theory method. Results: The findings revealed the strategies to effective communication about the end of life included: being open and honest; having ongoing, early conversations; communicating about modifying treatment goals; and balancing hope and reality. Barriers to implementing these strategies fell broadly into three domains, including physician factors, patient factors, and institutional factors. Physician factors included difficulty with treatment and palliation, personal discomfort with death and dying, diffusion of responsibility among colleagues, using the “death-defying mode,” lack of experience, and lack of mentorship. Patient factors included, patients and/or families being reluctant to talk about the end of life, language barriers, and younger age. Institutional factors included stigma around palliative care, lack of protocol about end-of-life issues; and lack of training for oncologists on how to talk with patients about end-of-life issues. Conclusion: We conclude by drawing implications from our study and suggest that further research and intervention are necessary to aid oncologists in achieving effective communication about end-of-life issues. PMID:23942929

  15. Integration of end-of-life education into a community health nursing course.

    PubMed

    Pullis, Bridgette Crotwell

    2013-01-01

    Student nurses and novice nurses report that they received little in their nursing education to adequately prepare them for the death of a patient. The American Association of Colleges of Nursing's (AACN) competencies for end-of-life care assert the need for competent nursing care at the time of death. To prepare students to care for dying patients and their families, a hospice clinical experience in a community health nursing course was designed to facilitate the development of competence in caring for adults and children at the end of life. At the end of the semester, the students were able to demonstrate principles of pain and symptom management and to communicate the goals and philosophy of hospice care to dying patients and their families. The students also demonstrated the ability to advocate for individuals at the end of life through the provision of information about hospice care, especially the benefits for timely referral to hospice and palliative care. The incorporation of a clinical experience into a community health nursing course that focuses on end-of-life care is an effective approach to teaching both community health concepts and care of dying patients. Such an approach incorporates essential content without adding to already extensive nursing curricula. PMID:24000920

  16. Help patients and families as they struggle with end-of-life issues.

    PubMed

    2016-05-01

    When patients appear to be reaching the end of life, case managers should find out their wishes, alert the treating physician and the rest of the staff, and ensure that patients' wishes are carried out. In an effort to encourage discussions about end-of-life care, the Centers for Medicare & Medicaid Services (CMS) has begun paying physicians for consultations on advance care planning. CMS' push toward pay for performance and bundled payments creates financial incentives for hospitals to consider alternatives to admitting patients as inpatients. Providers' feelings sometimes make them hesitant to talk about end-of-life issues with patients and family members. Case managers should take a patient-centered approach and find out patients' goals before bringing up hospice care, and educate family members on what to expect when they get home. PMID:27183773

  17. 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.

  18. 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. PMID:25728958

  19. 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…

  20. Experiences of Pediatric Oncology Patients and Their Parents at End of Life: A Systematic Review.

    PubMed

    Montgomery, Kathleen; Sawin, Kathleen J; Hendricks-Ferguson, Verna L

    2016-01-01

    Improvement in pediatric palliative and end-of-life care has been identified as an ongoing research priority. The child and parent experience provides valuable information to guide how health care professionals can improve the transition to end of life and the care provided to children and families during the vulnerable period. The purpose of this systematic review was to describe the experience of pediatric oncology patients and their parents during end of life, and identify gaps to be addressed with interventions. A literature search was completed using multiple databases, including CINAHL, PubMed, and PsycInfo. A total of 43 articles were included in the review. The analysis of the evidence revealed 5 themes: symptom prevalence and symptom management, parent and child perspectives of care, patterns of care, decision making, and parent and child outcomes of care. Guidelines for quality end-of-life care are needed. More research is needed to address methodological gaps that include the pediatric patient and their sibling's experience. PMID:26219300

  1. Influence of the metropolitan environment on end-of-life decisions: A population-based study of end-of-life decision-making in the Brussels metropolitan region and non-metropolitan Flanders.

    PubMed

    Cohen, Joachim; Chambaere, Kenneth; Bilsen, Johan; Houttekier, Dirk; Mortier, Freddy; Deliens, Luc

    2010-09-01

    Research is beginning to show differences between end-of-life care in metropolitan and non-metropolitan areas. Using population-based post-mortem surveys this article compares medical end-of-life decisions in the Brussels metropolitan area and non-metropolitan Flanders (Belgium). In Brussels, administering lethal drugs without an explicit patient request occurred more often, intensification of symptom alleviation and non-treatment decisions less often, and end-of-life treatment was more often aimed at cure or life prolongation, than in non-metropolitan Flanders. This paper argues that these differences in end-of-life decisions are related to characteristics of the metropolitan environment and hence may also apply in other metropolitan regions worldwide. Specific approaches to end-of-life decisions in metropolitan areas need to be considered. PMID:20430683

  2. [Quality end of life in uremic patients: theory and practice].

    PubMed

    Galassi, Andrea; Giovenzana, Maria Enrica; Prolo, Federico; Colombo, Anna Maria; Orsi, Luciano; Fucci, Sergio; Sorbara, Loredana; Viganò, Silvia; Clementi, Chiara; Falcaro, Susi; Auricchio, Sara; Dozio, Beatrice; Scanziani, Renzo

    2016-01-01

    The rate of fragile elderly patients affected by chronic kidney disease stage 5-5D is rapidly increasing. The decision making process regarding the start and the withdrawal of dialysis is often difficult for all those involved: patients, relatives, nephrologists and renal nurses. Therefore nephrologists and renal nurses are called to rapidly improve their theoretical and practical competence about the end-of-life care. The quality of clinical intervention and management requires a sound expertise in the ethical, legal, organizational and therapeutic aspects, not trivial nor even deductible from purely private and individual opinions nor from traditional medical practice. The present paper discusses the ethical and legal implications related to the start rather than to withdrawn from dialysis, preferring a non-dialysis medical treatment and / or palliative care. Operational aspects regarding the regional network of palliative care, the path of shared decision making process and a systematic approach to optimize medical and nursing interventions through the Liverpool Care Pathway program are discussed thereafter. PMID:27374389

  3. 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. PMID:25457272

  4. Emergency Department Visits at the End of Life of Patients With Terminal Cancer: Pattern, Causes, and Avoidability.

    PubMed

    Alsirafy, Samy A; Raheem, Ahmad A; Al-Zahrani, Abdullah S; Mohammed, Amrallah A; Sherisher, Mohamed A; El-Kashif, Amr T; Ghanem, Hafez M

    2016-08-01

    Frequent emergency department visits (EDVs) by patients with terminal cancer indicates aggressive care. The pattern and causes of EDVs in 154 patients with terminal cancer were investigated. The EDVs that started during working hours and ended by home discharge were considered avoidable. During the last 3 months of life, 77% of patients had at least 1 EDV. In total, 309 EDVs were analyzed. The EDVs occurred out of hour in 67%, extended for an average of 3.6 hours, and ended by hospitalization in 52%. The most common chief complaints were pain (46%), dyspnea (13%), and vomiting (12%). The EDVs were considered avoidable in 19% of the visits. The majority of patients with terminal cancer visit the ED before death, mainly because of uncontrolled symptoms. A significant proportion of EDVs at the end of life is potentially avoidable. PMID:25877944

  5. The Role of Chemotherapy at the End of Life

    PubMed Central

    Harrington, Sarah Elizabeth; Smith, Thomas J.

    2011-01-01

    Patients face difficult decisions about chemotherapy near the end of life. Such treatment might prolong survival or reduce symptoms but cause adverse effects, prevent the patient from engaging in meaningful life review and preparing for death, and preclude entry into hospice. Palliative care and oncology clinicians should be logical partners in caring for patients with serious cancers for which symptom control, medically appropriate goal setting, and communication are paramount, but some studies have shown limited cooperation. We illustrate how clinicians involved in palliative care and oncology can more effectively work together with the story of Mr L, a previously healthy 56-year-old man, who wanted to survive his lung cancer at all costs. He lived 14 months with 3 types of chemotherapy, received chemotherapy just 6 days before his death, and resisted entering hospice until his prognosis and options were explicitly communicated. Approaches to communication about prognosis and treatment options and questions that patients may want to ask are discussed. PMID:18544726

  6. 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

  7. Preparing for the End of Life

    MedlinePlus

    ... Thanks in large part to advances in public health, medicine, and health care, most Americans no longer die suddenly from ... National Institute on Aging | U.S. National Library of Medicine | National Institutes of Health | U.S. Department of Health & Human Services Contact us | ...

  8. Dementia at the End of Life

    MedlinePlus

    ... or giving up their jobs because of the demands of caregiving. Most of those family members taking care of dying Alzheimer's disease patients at home expressed relief when death happened—for themselves and for the person who died. It is important to realize such ...

  9. [The End-of-life Clinic: results from the first year].

    PubMed

    Snijdewind, Marianne C; Onwuteaka-Philipsen, Bregje D; Willems, Dick L

    2016-01-01

    In 2012 the Dutch Dying with Dignity Society (NVVE) founded the End-of-life Clinic, which provides euthanasia or help with assisted suicide at the request of people whose own doctor will not carry out euthanasia if the legal requirements of due care can been fulfilled. As part of an independent evaluation, we looked at the applications received by the End-of-life Clinic during its first year and at the outcomes of these applications. We wrote an extensive article on this subject which was published in JAMA Internal Medicine. One of the most important outcomes is that the End-of-life Clinic rejected a large percentage of the requests for its services, mainly as these came from people with psychiatric conditions. This means that the fears that some people have concerning the alleged End-of-life Clinic policy 'you ask, we comply', appear to be unfounded. On the other hand, the End-of-life Clinic is certainly not the solution for all those people whose requests to their own doctor fall on deaf ears. PMID:26840939

  10. [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. PMID:25711786

  11. 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…

  12. 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

  13. End-of-Life Decision-Making in Canada: The Report by the Royal Society of Canada Expert Panel on End-of-Life Decision-Making

    PubMed Central

    Schüklenk, Udo; Van Delden, Johannes J M; Downie, Jocelyn; Mclean, Sheila A M; Upshur, Ross; Weinstock, Daniel

    2011-01-01

    This report on end-of-life decision-making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters. Chapter 1 reviews what is known about end-of-life care and opinions about assisted dying in Canada. Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death. Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order. Chapter 4 reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form. Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document. PMID:22085416

  14. ["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

  15. [Two Cases of Caudal Alcohol Block for Perineal Pain that Occurred in Cancer End-of-Life].

    PubMed

    Takahashi, Masahiro; Takahara, Hiroshi; Wakabayashi, Takanobu

    2016-06-01

    We experienced two cases of end-of-life cancer patients with perineal pain, whose pain was relieved by 5 ml absolute ethanol caudal block. Although the first injection was ineffective, the second injection resulted in significant relief of pain in both cases. Although the indication should be carefully considered, alcohol caudal block is an analgesic method worth considering for the end-of-life cancer patients complaining of perineal pain. PMID:27483665

  16. End-of-Life Preference Discussions between Elderly Japanese American Men and Their Families: The Honolulu-Asia Aging Study

    PubMed Central

    Okamoto, Lauren; Bell, Christina; Fong, Kaon; Masaki, Kamal

    2015-01-01

    Background: Challenging cases in geriatrics often involve lack of communication regarding end-of-life preferences and cultural issues. There have been no previous population-based studies on acculturation and end-of-life preference discussions among older Japanese-Americans. Methods: The Honolulu-Asia Aging Study is a continuation of the Honolulu Heart Program, a longitudinal cohort study in Japanese-American men in Hawai‘i that began in 1965. In the 2009–10 exam, participants identified a proxy informant who answered questions about their knowledge of the men's end-of-life preferences. We studied the relationship between end-of-life preference discussions and completion of a written advance directive and actual preferences for end-of-life care, as well as associations between discussions and demographic and cultural factors. The Cultural Assimilation Scale (CAS) consisted of 8 questions assessing degree of Japanese identity and lifestyle. Results: Among 350 participants aged 89–108 years, proxy informants were wives (29.4%), daughters (29.4%), sons (22.0%), other relatives (8.0%) and others (mostly paid caregivers, 11.1%). On proxy interview, 70.7% reported end-of-life preference discussions and 29.3% did not. Those who had end-of-life preference discussions were more likely to have completed a written advance directive compared to those without discussions (93.6% vs 61.5%, P < .0001). Even among those with discussions, many proxies were unsure about certain preferences, including tube feeding (27.4%), nursing home care (23.8%) and dementia care (20.2%). Factors associated with having end-of-life preference discussions included Christian religion (vs Buddhist/Shinto, OR = 1.85, 95% CI = 1.00−3.41, P < .05) and daughter as proxy informant (vs wife, OR = 2.34, 95% CI = 1.20−4.54, P = .01), but no associations with age, education, marital status or acculturation scores. Conclusion: Among this oldest-old population, there were almost 30% who did not have end-of-life

  17. [Advance instructions for patients at the end of life at home and the nurse's role].

    PubMed

    Jouy, Isabelle; Pagadoy, Nathalie

    2014-01-01

    An elderly person's choice to remain at home until the end of their life must be respected. Their care requires a multidisciplinary approach in consultation with the patient and their family. The fundamental element remains the support of a human being approaching the end of life. This article presents the example of the Arc en Ciel palliative care network which works with patients in their homes. PMID:25597068

  18. 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…

  19. An examination of social cognitive theory with differences among sexually aggressive, physically aggressive and nonaggressive children in state care.

    PubMed

    Burton, D L

    1999-01-01

    Three groups of boys in Washington State care (37 sexually aggressive, 17 physically aggressive, and 15 nonaggressive) are compared on measures of behavior and cognition. Bandura's Social Cognition theory is offered as a possible explanation for sexual aggression by children. Two theory-based hypothesis are tested. First, are sexually aggressive children cognitively deficient when compared to the other groups? Second, do the sexually aggressive children have cognitive distortions about their behavior and about sex? Similarities were found in the aggressive and sexually aggressive groups on several measures. Physically aggressive boys were found to have some sexual behavior problems. Sexually aggressive boys were also found to be physically aggressive. Physically aggressive boys were found to have the least severe and least frequent victimization history. No support was found for the first hypothesis, while some evidence of cognitive distortions regarding both social behavior and sex was found in the sexually aggressive children. Discussion and some implications for research and practice are offered. PMID:10418769

  20. Rethinking Suffering: Allowing for Suffering that is Intrinsic at End of Life.

    PubMed

    Rattner, Maxxine; Berzoff, Joan

    2016-01-01

    The dilemma so central to the work of providers of palliative and end-of-life care is the paradox of their professional and ethical duty to try to relieve suffering and the limitations of so doing. While the capacity to sit with suffering at the end of life is critical to clinical work, the idea that some intrinsic suffering cannot necessarily always be relieved may model for patients and families that suffering can be borne. Clinicians who encounter unrelievable suffering may feel a sense of failure, helplessness, moral distress, and compassion fatigue. While tolerating suffering runs counter to the aims of palliative care, acknowledging it, bearing it, and validating it may actually help patients and families to do the same. "Sitting with suffering" signals a paradigm shift within the discipline of palliative care, as it asks clinicians to rethink their role in being able to relieve some forms of psychosocial suffering intrinsic to dying. PMID:27462954

  1. Challenges Facing Families at the End of Life in Three Settings

    PubMed Central

    Kehl, Karen A.; Kirchhoff, Karin T.; Kramer, Betty J.; Hovland-Scafe, Cyndi

    2010-01-01

    This study examined the challenges faced by family members at the end of life in different care settings and how those challenges compare across settings. A total of 30 participants, who had a family member die in inpatient hospice, a skilled nursing facility or a community support program were interviewed. Semi-structured interviews were recorded and transcribed. Text was coded using qualitative thematic analysis. Themes were determined by consensus. Twelve challenges were identified across care sites. Two themes emerged in all three settings: bearing witness and the experience of loss. The study findings contribute to our knowledge of family perceptions of care in different settings and raises awareness of the need for further research describing the experiences at the end of life in different settings and the importance of creating and testing interventions for both setting specific needs and universal issues. PMID:20563315

  2. Thinking about the end of life: a common issue for patients with Huntington's disease.

    PubMed

    Booij, Suzanne J; Tibben, Aad; Engberts, Dick P; Marinus, Johan; Roos, Raymund A C

    2014-11-01

    The aim of this study was to investigate the presence of thoughts or wishes for the end of life in patients with Huntington's disease (HD) or identified gene carriers (further mentioned together as patients). A custom-made questionnaire, based on previous qualitative research, was sent out to 242 patients with HD and identified gene carriers. Presence of wishes was investigated and correlated to demographic and clinical characteristics. A total of 134 patients (55 %) returned the questionnaire. 101 respondents (75 %) reported to have some kind of thoughts or wishes for the end of life. For 15 respondents (11 %) these thoughts concerned care; 86 respondents (64 %) reported to have also thoughts about euthanasia or physician-assisted suicide (PAS). The presence of any thoughts about the end of life was significantly related to being familiar with HD in the family, but not related to any other demographic or clinical variable. Participants with thoughts specifically about euthanasia or PAS were of higher education and in earlier stages of the disease than participants without such thoughts. Thoughts or wishes for the end of life are present amongst patients with HD. These thoughts include euthanasia or PAS in a majority of the respondents. It is suggested that prudential addressing of these issues may enhance the doctor-patient relationship. PMID:25178513

  3. [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. PMID:26668040

  4. Differential medical and surgical house staff involvement in end-of-life decisions: A retrospective chart review.

    PubMed

    Kelley, Amy S; Gold, Heather T; Roach, Keith W; Fins, Joseph J

    2006-08-01

    To quantify the house officer's role in end-of-life decisions, the authors abstracted charts for documentation of end-of-life discussions for 100 patients withdrawn from life-sustaining treatment. They assessed the proportion of end-of-life care notes written by house officers, controlling for service, length of stay, outpatient physician involvement, race, and diagnostic category. Patients on the medical service were 22 times more likely to have house officer end-of-life notes than patients on the surgical service (P < 0.00001). Sixty-one percent of medical patients and 10% of surgical patients had a do-not-resuscitate note written by a house officer (P < 0.00001). House officers on the medical service wrote a significantly greater proportion of notes regarding withdrawal of care than surgical house officers (41% vs. 10%, P < 0.00001). This study reveals extensive involvement of medical house officers in primary end-of-life discussions with a complex patient population undergoing withdrawal of life-sustaining therapy. Team structure and professional culture may account for some of the observed differences between the medical and surgical services. These findings have significant implications for the education of house officers on end-of-life communication. PMID:16877178

  5. 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. PMID:23180338

  6. 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. PMID:26744359

  7. Informed shared decision-making in planning for the end of life.

    PubMed

    Price, Jane

    In recent years, a number of shortcomings in the NHS have been identified in end-of-life care delivered in hospital for people with long-term conditions other than terminal cancer. This article gives an overview of the findings of a Dignity in Care travel scholarship, which was undertaken to establish whether an American shared informed decision aid, specifically designed to initiate therapeutic conversations for this patient group, might reasonably be adopted in an NHS setting. One tool specifically for this purpose was in use in the USA at the time, and its efficacy formed part of a broader research study being carried out at Dartmouth Hitchcock Medical Center (DHMC) in New England. Concurrently in the UK, The Health Foundation supported a 3-year study that focused exclusively on the development of a range of 'option grids' for clinical interventions and did not include an end-of-life model. PMID:27081732

  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). PMID:26107544

  9. Incorporating End-of-Life Issues into Psychology Courses.

    ERIC Educational Resources Information Center

    Werth, James L., Jr.

    2002-01-01

    Discusses the reasons why teaching about the process of dying is relevant content for psychology courses. Offers suggestions for teaching about end-of-life issues in various courses on: (1) ethical, legal, and professional issues courses; (2) adult and life span development; (3) counseling diverse populations; and (4) assessment and diagnosis.…

  10. 47 CFR 25.283 - End-of-life disposal.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... Technical Operations § 25.283 End-of-life disposal. (a) Geostationary orbit space stations. Unless otherwise... satellite orbit under this part shall be relocated, at the end of its useful life, barring catastrophic failure of satellite components, to an orbit with a perigee with an altitude of no less than: 36,021...

  11. 47 CFR 25.283 - End-of-life disposal.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... Technical Operations § 25.283 End-of-life disposal. (a) Geostationary orbit space stations. Unless otherwise... satellite orbit under this part shall be relocated, at the end of its useful life, barring catastrophic failure of satellite components, to an orbit with a perigee with an altitude of no less than: 36,021...

  12. Nutritional support at the end of life: the relevant ethical issues.

    PubMed

    Jones, Barry J M

    2007-05-01

    This article attempts to summarize the ethics of nutritional support at the end of life. Although ethics are timeless, they have to be applied or adapted to new situations arising from our ability to prolong life by the application of relatively new nutritional treatments. The application of the law, and guidance from professional bodies on withholding or withdrawing treatment remains an emotive challenge for all involved in nutritional care and for society as a whole. PMID:17413288

  13. [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. PMID:17728119

  14. End-of Life Issues in the Context of Alzheimer’s Disease

    PubMed Central

    Allen, Rebecca S.; Kwak, Jung; Lokken, Kristine L.; Haley, William E.

    2009-01-01

    This article presents an overview of end-of-life care for individuals with Alzheimer’s disease (AD) and their family caregivers. We define end-stage AD, and review neuropsychological and behavioral characteristics along with concomitant issues in therapeutic assessment. We then review the literature regarding programs and treatments for end-stage AD, the need for advance care planning and family participation in medical decision-making, familial caregiving stress, and issues associated with palliative care and bereavement outcomes. Methodological issues in the extant research literature are addressed, including issues of treatment implementation, validity, and clinical significance. Translational research and demonstration projects are encouraged. PMID:19997523

  15. 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. PMID:24911593

  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. Culturally Diverse Communities and End-of-Life Care

    MedlinePlus

    ... resuscitation, feeding tubes) and preferences: to know a terminal diagnosis; to die at home, in the hospital, ... study, Latinos differed in wanting to know a terminal diagnosis (Sullivan, 2001). Hospices serve primarily Whites (83%), ...

  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. PMID:23777235

  19. Research participation by older adults at end of life: barriers and solutions.

    PubMed

    Mackin, Melissa Lehan; Herr, Keela; Bergen-Jackson, Kimberly; Fine, Perry; Forcucci, Chris; Sanders, Sara

    2009-07-01

    The purpose of this article is to elaborate on barriers to research participation by older adults at end of life. We focus on the hospice setting and classify barriers to research participation into six domains: societal attitudes toward death, research procedures, health care organizations, agency staff, patients' families and caregivers, and patient characteristics. We characterize particular participation issues, uncertainties in participation for individuals with advanced illness, and infringements on patient self-determination, as well as potential solutions to these research challenges. Our observation of the complex palliative context includes the realization that a singular change will not have large enough impact on participation. We conclude that, along with the responsibility to expand the research base addressing the needs of dying individuals, there is also a need to understand the challenges of implementing research projects with older adults at end of life. PMID:20078006

  20. The need to revise assumptions about the end of life: implications for social work practice.

    PubMed

    Bern-Klug, M; Gessert, C; Forbes, S

    2001-02-01

    During the 20th century the experience of dying changed dramatically. At the beginning of the 1900s, dying and death were integral parts of the life experience of most people at any age. Many deaths occurred at home following a short course of illness largely unaffected by the limited medical care available. At the beginning of the 21st century, in many cases, the process of dying has become invisible. Today, most deaths occur in old age. Social workers have a key role as "context interpreters" in helping people at the end of life and their families understand the natural course of the illness, the process of dying, and the advantages and drawbacks of medical interventions. An expanded role for social workers in helping people comprehend the medical and social contexts within which they face end-of-life decisions is discussed. PMID:11338278

  1. Research Participation by Older Adults at the End-of-Life: Barriers and Solutions

    PubMed Central

    Mackin, Melissa Lehan; Herr, Keela; Bergen-Jackson, Kimberly; Fine, Perry; Forcucci, Chris; Sanders, Sara

    2013-01-01

    The purpose of this paper is to elaborate upon barriers to research participation by older adults at end-of-life. We focus on the hospice setting and classify barriers to research participation into six domains:1) societal attitudes towards death; 2) research procedures; 3) health care organizations; 4) agency staff; 5) patients’ families and caregivers; and 6) patient characteristics. We characterize particular participation issues, uncertainties in participation for individuals with advanced illness, infringements upon patient self-determination, as well as, potential solutions to these research challenges. Our observation of the complex palliative context included the realization that a singular change would not have large enough impact. We concluded that simultaneous with the need to expand the research base addressing the needs of dying persons is a need to understand the challenges of implementing research projects with older persons at end-of-life. PMID:20078006

  2. Ageing prisoners' views on death and dying: contemplating end-of-life in prison.

    PubMed

    Handtke, Violet; Wangmo, Tenzin

    2014-09-01

    Rising numbers of ageing prisoners and goals on implementing equivalent health care in prison raise issues surrounding end-of-life care for prisoners. The paucity of research on this topic in Europe means that the needs of older prisoners contemplating death in prison have not been established. To investigate elderly prisoners' attitudes towards death and dying, 35 qualitative interviews with inmates aged 51 to 71 years were conducted in 12 Swiss prisons. About half of the prisoners reported having thought about dying in prison, with some mentioning it in relation with suicidal thoughts and others to disease and old age. Themes identified during data analysis included general thoughts about death and dying, accounts of other prisoners' deaths, availability of end-of-life services, contact with social relations, and wishes to die outside of prison. Study findings are discussed using Allmark's concept of "death without indignities," bringing forth two ethical issues: fostering autonomy and removing barriers. Attributing the identified themes to these two ethical actions clarifies the current needs of ageing prisoners in Switzerland and could be a first step towards the implementation of end-of-life services in correctional systems. PMID:24965438

  3. Zinc-catalyzed depolymerization of end-of-life polysiloxanes.

    PubMed

    Enthaler, Stephan

    2014-03-01

    Polymers occupy an important role in our current society. Besides their great success, an issue is the accumulation of huge amounts of end-of-life polymers. Currently, the waste management is based primarily on landfills, thermal recycling, and downcycling. Notably, only a small portion of end-of-life materials is recycled by depolymerization, which refers to the creation of synthetic precursors that can be polymerized to new polymers to close the cycle. Widely used polymers in modern times are silicones (polysiloxanes), the intrinsic properties of which make their depolymerization demanding; only a few high-temperature or less environmentally friendly processes have been reported. In this regard, we have established an efficient low-temperature protocol for the depolymerization of silicones with benzoyl fluoride in the presence of cheap zinc salts as precatalysts to yield defined products. Notably, the products can be useful synthetic precursors for the preparation of new polymers, so that an overall recycling process is feasible. PMID:24501107

  4. 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

  5. End-of-life experiences: reaching out for compassion, communication, and connection-meaning of deathbed visions and coincidences.

    PubMed

    Fenwick, Peter; Brayne, Sue

    2011-02-01

    A recent study shows that the greatest fear for many Britons is to die alone. More than half the complaints received by the UK National Health Service (NHS) concern end-of-life care, with an emphasis on spiritual matters. Much has been written on the spiritual needs of the dying, but many doctors and nurses still find this a difficult area to approach. They lack the confidence and/or training to recognize or discuss spiritual aspects of death and dying or to affirm the spiritual needs of the dying person. Our end-of-life experience (ELE) research suggests that deathbed visions (DVs) and deathbed coincidences (DCs) are not uncommon, and that the dying process appears to involve an instinctive need for spiritual connection and meaning, requiring compassionate understanding and respect from those who provide end-of-life care. PMID:20801918

  6. Conflict resolution in end-of-life decisions in the neonatal unit.

    PubMed

    Laing, Ian A

    2013-04-01

    End-of-life decisions are always stressful for families and professionals. As the decades pass, ethics and the law both change, even in one society, and cannot always provide perfect choices for each individual patient. Conflict should rarely arise in the neonatal unit. High-quality communication and compassion should allow professionals and families to build a team approach to the care of their child, even when the infant is imperilled. Each unit should have structures in place to deal with conflict, and every senior professional must be trained in conflict resolution so that the care of the family is outstanding. PMID:23084607

  7. Facing death, gazing inward: end-of-life and the transformation of clinical subjectivity in Thailand.

    PubMed

    Stonington, Scott

    2011-06-01

    In this article, I describe a new form of clinical subjectivity in Thailand, emerging out of public debate over medical care at the end of life. Following the controversial high-tech death of the famous Buddhist monk Buddhadasa, many began to denounce modern death as falling prey to social ills in Thai society, such as consumerism, technology-worship, and the desire to escape the realities of existence. As a result, governmental and non-governmental organizations have begun to focus on the end-of-life as a locus for transforming Thai society. Moving beyond the classic outward focus of the medical gaze, they have begun teaching clinicians and patients to gaze inward instead, to use the suffering inherent in medicine and illness to face the nature of existence and attain inner wisdom. In this article, I describe the emergence of this new gaze and its major conceptual components, including a novel idea of what it means to be 'human,' as well as a series of technologies used to craft this humanity: confession, "facing suffering," and untying "knots" in the heart. I also describe how this new subjectivity has begun to change the long-stable Buddhist concept of death as taking place at a moment in time, giving way for a new concept of "end-of-life," an elongated interval to be experienced, studied, and used for inner wisdom. PMID:21573883

  8. Physician perspectives on legal processes for resolving end-of-life disputes.

    PubMed

    Chidwick, Paula; Sibbald, Robert

    2011-01-01

    In order to understand how to effectively approach end-of-life disputes, this study surveyed physicians' attitudes towards one process for resolving end-of-life disputes, namely, the Consent and Capacity Board of Ontario. In this case, the process involved examining interpretation of best interests between substitute decision-makers and medical teams. Physicians who made "Form G" applications to the Consent and Capacity Board of Ontario that resulted in a decision posted on the open-access database, Canadian Legal Information Institute (CanLii), were identified and surveyed. This purposive sample led to 13 invitations to participate and 12 interviews (92% response rate). Interviews were conducted using a prescribed interview guide. No barriers to the Consent and Capacity Board process were reported. Applications were made when physicians reached an impasse with the family and further treatment was perceived to be "unethical." The most significant challenge reported was the delay when appeals were launched. Appeals extended the process for an indefinite period of time making it so lengthy it negated any perceived benefits of the process. Benefits included that a neutral third party, namely the Consent and Capacity Board, was able to assess best interests. Also, when decisions were timely, further harm to the patient was minimized. Physicians reported this particular approach, namely the Consent and Capacity Board has a mechanism that is worthwhile, patient centred, process oriented, orderly and efficient for resolving end-of-life disputes and, in particular, determining best interests. However, unless the appeal process can be adjusted to respond to the ICU context there is a risk of not serving the best interest of patients. Physicians would recommend framing end-of-life treatment plans in the positive instead of negative, for example, propose palliative care and no escalation of treatment as opposed to withdrawal. PMID:21841397

  9. 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. PMID:24644162

  10. End of Life and Life After Death - Issues to be Addressed.

    PubMed

    Sridhar, Poojar; Renuka, Pramod Kallur Parameshwar; Bonanthaya, Ravikiran

    2012-09-01

    Being an Oncologist, I have seen many patients suffering from cancer. It pains a lot looking at them fighting the battle of life, though knowing that they would lose miserably and surrender meekly as majority of the patients report to the hospital at an advanced stage of disease and only palliative care may be the option. There is an urgent need to create - Cancer Awareness in the villages and also about the end of life care in all terminally ill patients. 20 patients in the terminal phase were questioned regarding end of life care. The common questions they asked are, why has God punished me like this? Why me on earth? Should I die so early? Why should I leave my near and dear ones and go far away, from the point of no return? Do I ever see them again? With deep sorrow and sigh, they suffer till the last breath, having the feeling of insecurity as what would happen to their dear ones. In the terminal phase, the patients wishes must be respected and their needs must be fulfilled. The health care professionals should plan an appropriate care for each patient. Most of them feel that the best place to be in end of life is the home. Research has shown that Hospice care may improve the quality of life of a patient who is dying and of the patient's family. Communication about end of life care and decision making during the final moments of a person's life are very important. The patients suffering are mainly due to the physical, psychological, social and spiritual issues. Death of a terminally ill patient should never be a sudden loss. All healthcare professionals, Social workers and Non-Governmental Organisations must install the life after death of the person, who has struggled for every breath and assure that he/she shall rest in peace and shall smile seeing their near and dear ones living with dignity and pride in the society. Ultimately, the patient must have dignity in dying. PMID:23440306

  11. 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

  12. 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…

  13. Gastrostomy tube placement in patients with advanced dementia or near end of life.

    PubMed

    Schwartz, Denise Baird; Barrocas, Albert; Wesley, John R; Kliger, Gustavo; Pontes-Arruda, Alessandro; Márquez, Humberto Arenas; James, Rosemarie Lembo; Monturo, Cheryl; Lysen, Lucinda K; DiTucci, Angela

    2014-12-01

    Based on current scientific literature, gastrostomy tube (G-tube) placement or other long-term enteral access devices should be withheld in patients with advanced dementia or other near end-of-life conditions. In many instances healthcare providers are not optimally equipped to implement this recommendation at the bedside. Autonomy of the patient or surrogate decision maker should be respected, as should the patient's cultural, religious, social, and emotional value system. Clinical practice needs to address risks, burdens, benefits, and expected short-term and long-term outcomes in order to clarify practice changes. This paper recommends a change in clinical practice and care strategy based on the results of a thorough literature review and provides tools for healthcare clinicians, particularly in the hospital setting, including an algorithm for decision making and a checklist to use prior to the placement of G-tubes or other long-term enteral access devices. Integrating concepts of patient-centered care, shared decision making, health literacy, and the teach-back method of education enhances the desired outcome of ethical dilemma prevention. The goal is advance care planning and a timely consensus among health team members, family members, and significant others regarding end-of-life care for patients who do not have an advance directive and lack the capacity to advocate for themselves. Achieving this goal requires interdisciplinary collaboration and proactive planning within a supportive healthcare institution environment. PMID:25293595

  14. Ethical and practical principles underlying the end of life decisions.

    PubMed

    Sharma, B R

    2004-09-01

    "I will not relinquish old age, if it leaves my better part intact. But, if it begins to shake my mind, if it destroys its faculties one by one, if it leaves me not life but breath, I will depart from the putrid or tottering edifice. If I must suffer without hope or relief, I will depart, not through fear of the pain itself, but because it prevents all for which I would live." Seneca, the great Roman statesman of 1st century AD, spoke these words 2 millennia before the Netherlands became, on November 28, 2000, the first country in the world to legalize euthanasia. The decisions pertaining to end of life, whether legalized or otherwise, are practiced in many parts of the world but not reported on account of legal implications. Lack of awareness regarding the distinction between different procedures on account of legal status granted to them in some countries is the other area of concern. Debate among the medical practitioners, lawmakers, and the public taking into consideration the cultural, social, and religious ethos will lead to increased awareness, more safeguards, and improvement of medical decisions concerning the end of life. PMID:15322464

  15. Assessing the end-of-life impacts of buildings.

    PubMed

    Vieira, Pedro Santos; Horvath, Arpad

    2008-07-01

    This paper builds on previous research on end of life of products by synthesizing some of the theories proposed in the literature and presenting a method for environmental decision-making related to buildings. This is achieved through different solutions, but most significantly through the use of hybrid life-cycle assessment and the definition of allocation boundaries in a way that decreases the uncertainty associated with technologicalforecasting. Results show that there is no significant difference between the results of two major end-of-life assessment approaches (attributional and consequential), and that the choice between the use of one or the other for buildings may not be a critical decision. Assessing the impacts of recycling polices requires accounting for product substitutions, market analysis, and the full supply chain impacts of the recycling chains. Increasing the recycling of concrete from deconstructed buildings from the current 27% rate to 50% could yield a 2-3% (2.7-5.6 million metric tons of CO2 equivalents) reduction in buildings' greenhouse gas emissions, or the equivalent of removing 408,000-847,000 typical cars from U.S. roads. PMID:18677988

  16. Pediatric Oncology: Managing Pain at the End of Life.

    PubMed

    Snaman, Jennifer M; Baker, Justin N; Ehrentraut, Jennifer H; Anghelescu, Doralina L

    2016-06-01

    Pain is a common and highly distressing symptom in pediatric patients with advanced malignancies. Prompt recognition, assessment, and treatment of pain are necessary, especially at the end of life. Opioid medications remain the mainstay of treatment of malignant pain in children at the end of life and the amount of opioids required for adequate pain control in patients is highly variable. Nonpharmacological approaches including behavioral and physical approaches in addition to non-opioid pain medications should be used when possible to augment pain control. Identification and treatment of any underlying pathology is important and use of adjuvant medications based on pathophysiology and source of pain should be considered. In cases where adequate pain control is not achieved through these multiple modalities, an interdisciplinary approach including potential interventional techniques and alternative treatments is required. This multimodal approach to pain management is best provided by interdisciplinary teams, as these teams can best address the complex causes of pain and associated distress that occurs in patients and within families. PMID:26951239

  17. The dying person: an existential being until the end of life.

    PubMed

    Lavoie, Mireille; Blondeau, Danielle; De Koninck, Thomas

    2008-04-01

    This article explores the experience of death from the perspective of existential philosophy, for the purpose of finding ways to humanize end-of-life nursing care. A person in his or her final days is seen by the caregiver as a being seeking the continual creation of his human becoming, from the experience of sickness to death. From the moment the torment of suffering begins, a person needs a presence of humanistic professionalism that embraces the values of the nursing profession. PMID:18336706

  18. Narrative autonomy: three literary models of healthcare in the end of life.

    PubMed

    Casado da Rocha, Antonio

    2014-04-01

    This article proposes a concept of narrative autonomy to supplement existing accounts in healthcare ethics. This is done by means of a comparison between three end-of-life scenarios: Tolstoy's The Death of Ivan Ilyich and two related contemporary stories by Lorrie Moore and Bernhard Schlink, which explore some problems arising when extremely individualistic notions of patient autonomy are put into practice. It is argued that the best model for palliative care is a cooperative one in which patient autonomy is understood as essentially social, and that involves decisional, executive, informational, and narrative dimensions. PMID:24534741

  19. Canadian Medical Association Perspectives on End-of-Life in Canada.

    PubMed

    Blackmer, Jeff; Francescutti, Louis Hugo

    2014-01-01

    The Canadian Medical Association (CMA) is the representative body for the physicians of Canada. Over the past year, the association has been devoting significant time and resources to considering the important issues involved in care at the end of life. It has conducted a series of public town hall meetings across the country to allow Canadians to express their view on these issues, the only organization to have done so. The CMA will be appearing before the Supreme Court in the Carter case in October 2014 as a "friend of the court" and will continue to represent the views of the medical profession in these complex and difficult areas. PMID:26871526

  20. Palliative Care

    MedlinePlus

    ... you with all of these questions and discussions. Making Decisions About End-of-Life Care DNR/DNI/AND ... Experience Positive Growth? Grieving and Palliative Care Overview Making Decisions About End-of-Life Care DNR/DNI/AND ...

  1. When is it okay to cry? An end-of-life simulation experience.

    PubMed

    Bartlett, Jennifer L; Thomas-Wright, Jenny; Pugh, Holly

    2014-11-01

    This article details how a small college of nursing affiliated with a faith-based health care corporation integrated the education of end-of-life care into a megacode simulation. Students participated in a high-fidelity simulated megacode scenario in which the simulator died. Following de-briefing, student groups participated in an additional scenario in which faculty coached them through postmortem care and interaction with a family member and a hospital chaplain. As a result of this multidimensional, interprofessional simulation, students developed heightened skill in applying basic life-saving measures, increased knowledge of and comfort with postmortem care, and increased awareness of the emotions elicited by the experience. PMID:25350901

  2. 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.

  3. 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.

  4. Subject Recruitment and Retention against Quadruple Challenges in an Intervention Trial of End-of-Life Communication

    PubMed Central

    Shields, Anne-Marie; Park, Mihyun; Ward, Sandra E.

    2010-01-01

    Studies of end-of-life care face difficulties associated with enrollment and attrition. Information and exemplars can help end-of-life care researchers anticipate such difficulties and customize recruitment and retention strategies to achieve planned sample sizes. We analyzed data on recruitment and retention efforts used in a clinical trial of an end-of-life communication intervention that involved African American dialysis patients and their chosen surrogate decision makers. Despite the challenges the trial faced (e.g., recruiting a minority group of patients who were seriously ill, had a surrogate decision maker willing to join the study, and were willing to engage in end-of-life discussions), the planned sample size was met, and nearly 90% of the participants completed the study. Various strategies were used to sustain accrual during the study. Although a total of 16 contacts per dyad had been planned from enrollment to 3-months data collection, 27 contacts were actually needed. The strategies and procedures used in this study may be pertinent to other studies that involve African Americans with serious illness and require dyadic participation. PMID:20936087

  5. 30 CFR 203.51 - How do I apply for end-of-life royalty relief?

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... 30 Mineral Resources 2 2011-07-01 2011-07-01 false How do I apply for end-of-life royalty relief? 203.51 Section 203.51 Mineral Resources BUREAU OF OCEAN ENERGY MANAGEMENT, REGULATION, AND ENFORCEMENT... Sulfur General Royalty Relief for End-Of-Life Leases § 203.51 How do I apply for end-of-life...

  6. 30 CFR 203.50 - Who may apply for end-of-life royalty relief?

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... 30 Mineral Resources 2 2011-07-01 2011-07-01 false Who may apply for end-of-life royalty relief? 203.50 Section 203.50 Mineral Resources BUREAU OF OCEAN ENERGY MANAGEMENT, REGULATION, AND ENFORCEMENT... Sulfur General Royalty Relief for End-Of-Life Leases § 203.50 Who may apply for end-of-life...

  7. Damage compounded: disparities, distrust, and disparate impact in end-of-life conflict resolution policies.

    PubMed

    Wojtasiewicz, Mary Ellen

    2006-01-01

    For a little more than a decade, professional organizations and healthcare institutions have attempted to develop guidelines and policies to deal with seemingly intractable conflicts that arise between clinicians and patients (or their proxies) over appropriate use of aggressive life-sustaining therapies in the face of low expectations of medical benefit. This article suggests that, although such efforts at conflict resolution are commendable on many levels, inadequate attention has been given to their potential negative effects upon particular groups of patients/proxies. Based on the well-documented tendency among many African Americans to prefer more aggressive end-of-life medical interventions, it is proposed that the use of institutional policy to break decision making impasse in cases for which aggressive treatment is deemed "medically inappropriate" will fall disproportionately on that group. Finally, it is suggested that the development and application of institutional conflict-resolution policies should be evaluated in the context of historical and current experiences of marginalization and disempowerment, lest such policies exacerbate that experience. PMID:16997811

  8. Is the doctrine of double effect irrelevant in end-of-life decision making?

    PubMed

    Allmark, Peter; Cobb, Mark; Liddle, B Jane; Tod, Angela Mary

    2010-07-01

    In this paper, we consider three arguments for the irrelevance of the doctrine of double effect in end-of-life decision making. The third argument is our own and, to that extent, we seek to defend it. The first argument is that end-of-life decisions do not in fact shorten lives and that therefore there is no need for the doctrine in justification of these decisions. We reject this argument; some end-of-life decisions clearly shorten lives. The second is that the doctrine of double effect is not recognized in UK law (and similar jurisdictions); therefore, clinicians cannot use it as the basis for justification of their decisions. Against this we suggest that while the doctrine might have dubious legal grounds, it could be of relevance in some ways, e.g. in marking the boundary between acceptable and unacceptable practice in relation to the clinician's duty to relieve pain and suffering. The third is that the doctrine is irrelevant because it requires there to be a bad effect that needs justification. This is not the case in end-of-life care for patients diagnosed as dying. Here, bringing about a satisfactory dying process for a patient is a good effect, not a bad one. What matters is that patients die without pain and suffering. This marks a crucial departure from the double-effect doctrine; if the patient's death is not a bad effect then the doctrine is clearly irrelevant. A diagnosis of dying allows clinicians to focus on good dying and not to worry about whether their intervention affects the time of death. For a patient diagnosed as dying, time of death is rarely important. In our conclusion we suggest that acceptance of our argument might be problematic for opponents of physician-assisted death. We suggest one way in which these opponents might argue for a distinction between such practice and palliative care; this relies on the double-effect doctrine's distinction between foresight and intention. PMID:20536766

  9. 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

  10. Ethical Case Study of the Researcher-Participant Relationship in End-of-Life Research.

    PubMed

    Olsen, Douglas P; Lehto, Rebecca H; Chan, Roxane Raffin

    2016-09-01

    Nurse-researchers studying interventions for patients at the end-of-life may become close with participants due to the nature of interactions within the research protocol. In such studies, participants may request further interactions that would constitute clinical care beyond the scope of the protocol. Nurse-researchers may feel a conflict of values between their obligation to the research goals and their inclinations and obligations as nurses to care for their patients. Nurse-researchers in this situation aspire to honor the bonds developed through close contact and ensure participants receive standard of care while maintaining standards of research ethics. Analysis of a case and review of applicable concepts in research ethics, including ethical relationships, therapeutic misconception, equipoise, and population vulnerability, are used to develop recommendations regarding the decision parameters for similar cases. PMID:27006191

  11. Prognosis and management of chronic kidney disease (CKD) at the end of life.

    PubMed

    Davison, Rachel; Sheerin, Neil S

    2014-02-01

    The prevalence of chronic kidney disease (CKD) increases with age. As people are living longer, nephrologists are responsible for a progressively older cohort of patients with substantial comorbidities. Patients with CKD have a significant symptom burden and can benefit from intervention and symptom control from an early stage in the illness. It is also increasingly recognised that renal replacement therapy may not always offer an improvement in symptoms or a survival advantage to older patients with high levels of comorbidity. For these reasons, non-dialytic (conservative) management and end-of-life care is becoming part of routine nephrology practice. Such patients will also frequently be encountered in other specialities, requiring generalists to have some renal-specific skills and knowledge. Although there have been significant advances in this field in recent years, the optimum model of care and some of the care preferences of patients remain challenges that need to be addressed. PMID:24319094

  12. 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. PMID:27333631

  13. 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. PMID:26380926

  14. “This is Our Last Stop”: Negotiating End of Life Transitions in Assisted Living

    PubMed Central

    Ball, Mary M.; Kemp, Candace L.; Hollingsworth, Carole; Perkins, Molly M.

    2014-01-01

    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 towards EOL processes and events, including how deaths were communicated and formally acknowledged and the impact of death and dying on 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. PMID:24984903

  15. How Can We Make the Pain Go Away? Public Policies to Manage Pain at the End of Life

    PubMed Central

    Imhof, Sara; Kaskie, Brian

    2011-01-01

    The continued undertreatment of pain at the end of life is a substantive public health problem that has not been resolved through increased public awareness, the issuance of clinical guidance for providers, or expanded organizational commitments. In this forum, we illuminate the role of public policies in promoting pain management. We review federal and state policies and consider empirical evaluations that compared the quality of state policies and the factors that contributed to their formation. We resolve that any organized interest in improving end-of-life care should begin by focusing on the development and expansion of those state policies that support the provision of evidence-based medicine for reducing the amount of pain an individual experiences at the end of life. Although empirical research is needed to determine which particular aspects of state pain policy are most critical and how these policies can be implemented most effectively, any organized effort that advances state medical board activity or another state policy would appear to be making an important step toward making the pain at the end of life go away. PMID:18728292

  16. The end of life and the family: hospice patients' views on dying as relational.

    PubMed

    Broom, Alex; Kirby, Emma

    2013-05-01

    The end of life is a highly emotive and critical period in the life course and families often play a central role during this time. Despite significant sociological work on dying as a relational experience, there has been little exploration of the significance of contemporary family structures and relations. In this article, drawing on the accounts of twenty hospice in-patients, we explore how the end of life (in this case within an in-patient unit) is mediated by family dynamics and expectations. Participants' accounts reveal a range of interpersonal experiences, including: pressures and strains on families and patients; differentiation in family responses to and involvement in the dying process; and tensions between individual and family preferences/desires. We argue that family dynamics strongly influence individual experiences near death and that the focus on individual preferences and the management of disease in palliative care contexts must be augmented with sophisticated and nuanced understandings of the family context. We suggest that sociological conceptual explanations of shifts in social and family life, such as individualisation and ontological security, may also help us better understand the ways families approach and respond to the dying process. PMID:22742736

  17. 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

  18. Older Adults’ Preferences for Independent or Delegated End-of-Life Medical Decision-Making

    PubMed Central

    Moorman, Sara M.

    2011-01-01

    Objectives This study assesses the proportions of participants who prefer independent or delegated medical decision-making at end-of-life, and examines the relationships of personal beliefs, affiliative beliefs, and end-of-life planning behaviors to decision-making preference. Methods Data are drawn from the Wisconsin Longitudinal Study, a sample of nearly 4,500 healthy white Midwestern high school graduates in their mid-60s. Results Four-fifths of participants wanted to make decisions independently. Valuing independence, being less avoidant of thoughts of death, and valuing quality of life over length of life had strong associations with a preference for independent decision-making. Those concerned about burdening a caregiver wanted to make independent decisions. Persons who both executed a living will and appointed a durable power of attorney for health care preferred independent decision-making. Discussion Older adults cite personal and affiliative beliefs, not lack of autonomy, as reasons for their choice to decide independently or delegate. PMID:20947875

  19. SMART-1 end of life shallow regolith impact simulations

    NASA Astrophysics Data System (ADS)

    Burchell, M. J.; Cole, M. J.; Ramkissoon, N. K.; Wozniakiewicz, P. J.; Price, M. C.; Foing, B.

    2015-08-01

    The SMART-1 end-of-life impact with the lunar surface was simulated with impacts in a two stage light-gas gun onto inclined basalt targets with a shallow surface layer of sand. This simulated the probable impact site, where a loose regolith will have overlaid a well consolidated basaltic layer of rock. The impact angles used were at 5° and 10° from the horizontal. The impact speed was ~2 km s-1 and the projectiles were 2.03 mm diameter aluminum spheres. The sand depth was between approximately 0.8 and 1.8 times the projectile diameter, implying a loose lunar surface regolith of similar dimensions to the SMART-1 spacecraft. A crater in the basement rock itself was only observed in the impact at 10° incidence, and where the depth of loose surface material was less than the projectile diameter, in which case the basement rock also contained a small pit-like crater. In all cases, the projectile ricocheted away from the impact site at a shallow angle. This implies that at the SMART-1 impact site the crater will have a complicated structure, with exposed basement rock and some excavated rock displaced nearby, and the main spacecraft body itself will not be present at the main crater.

  20. Scenario for Hollow Cathode End-Of-Life

    NASA Technical Reports Server (NTRS)

    Sarver-Verhey, Timothy R.

    2000-01-01

    Recent successful hollow cathode life tests have demonstrated that lifetimes can meet the requirements of several space applications. However, there are no methods for assessing cathode lifetime short of demonstrating the requirement. Previous attempts to estimate or predict cathode lifetime were based on relatively simple chemical depletion models derived from the dispenser cathode community. To address this lack of predicative capability, a scenario for hollow cathode lifetime under steady-state operating conditions is proposed. This scenario has been derived primarily from the operating behavior and post-test condition of a hollow cathode that was operated for 28,000 hours. In this scenario, the insert chemistry evolves through three relatively distinct phases over the course of the cathode lifetime. These phases are believed to correspond to demonstrable changes in cathode operation. The implications for cathode lifetime limits resulting from this scenario are examined, including methods to assess cathode lifetime without operating to End-of- Life and methods to extend the cathode lifetime.