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Bellamy, Annie. "4 Designing dying well: toward a new architectural approach of in-patient palliative care environments." BMJ Supportive & Palliative Care 8, no. 3 (2018): 361.1–361. http://dx.doi.org/10.1136/bmjspcare-2018-mariecurie.4.
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Neither a ‘hospital’ nor a ‘home’; the in-patient hospice has a unique architectural identity remaining largely undocumented. There is a plethora of architectural research regarding more common-place healthcare buildings such as hospitals and care-homes. (RIBA n.d) However the architecture of in-patient hospices is misunderstood in the role it can play in supporting the holistic principles of palliative care as backdrops for ‘not just a good death but a good life to the very end’ (Gawande 2014, pg. 245).Reconciling the social and spatial this research aims to establish an authentic identity for in-patient hospices; developing opportunities and situations for environments that become ‘sympathetic extensions of our sense of ourselves’ (Bloomer KC + Moore CW 1977, pg. 78) enabling those at the end of their life to dwell with dignity.An ethnographic study involving practise led design research; the research engages with experiences of the researcher and users of Welsh in-patient hospices alongside interrogations of existing architectural strategies. This inter-disciplinary methodology will provide a ‘back and forth’ movement to reflect with the community of practise upon design projects and fieldwork.Foundation work concluded that ‘homely’ is a too broad and subjective concept with which to define meaningful architectural responses for the variety of users and uses of in-patient hospices. Building upon this initial visits to Welsh in-patient hospices and design primers of key moments of inhabitation aims to provide conclusions on how architecture can create and balance the individual phenomenological experiences and needs of patients family and staff.References. RIBA. Health buildings and hospitals [Online] (n.d). Available at https://www.ribabookshops.com/books/health-buildings-and-hospitals/010503/ (Accessed: 31 May 2018). Gawande A. Being mortal: Medicine and what matters in the end2014;245. New York: Metropolitan Books Henry Holt and Company.. Kent BC, Charles MW. Body memory and architecture1977;78. New Haven & London: Yale University Press.
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CORLESS, INGE B. "Dying Well: Symptom Control Within Hospice Care." Annual Review of Nursing Research 12, no. 1 (1994): 125–46. http://dx.doi.org/10.1891/0739-6686.12.1.125.
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Montana, Bridget J. "Is hospice care dying in the USA?" International Journal of Palliative Nursing 19, no. 7 (2013): 316–17. http://dx.doi.org/10.12968/ijpn.2013.19.7.316.
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Franco, Vincent W. "The hospice: Humane care for the dying." Journal of Religion & Health 24, no. 1 (1985): 79–89. http://dx.doi.org/10.1007/bf01533262.
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Ashton, Joyce Marsden. "Bereavement Care in Home Care and Hospice." Home Health Care Management & Practice 20, no. 5 (2008): 394–99. http://dx.doi.org/10.1177/1084822307311840.
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The diagnosis of a chronic or terminal illness causes a variety of emotions for the patient and the care giver. Often bereavement and grief are not addressed by health care professionals. This article seeks to assist the health care provider in understanding the grief process and in offering interventions to aid the ill and dying.
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Clark, Peter A. "Palliative Care and Hospice: A Paradigm for End-of-Life Care in Developing Nations." Journal of Advances in Internal Medicine 6, no. 2 (2017): 38–44. http://dx.doi.org/10.3126/jaim.v6i2.18541.
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Traditionally, medical care has had two mutually exclusive goals: either to cure disease and to prolong life or to provide comfort care. Given this dichotomy, the decision to focus on reducing suffering is made usually only after life-prolonging treatment has been ineffectual and death is imminent, usually by days or hours. As a result, one of the best kept secrets in a hospital today in the United States is palliative care and hospice care. We estimate that of the 2.4 million Americans that die each year, about 80% end their lives in hospitals attached to the latest advances in technology; 300,000 die at home under hospice care. The reasons why more people do not receive palliative or hospice care range from the patient’s fear of abandonment and the unknown, the family’s denial of the inevitability of death of their loved one, and physician’s denial of medicine’s limitations. Unless the options of palliative or hospice care are given to patients the fears that people have of dying--fear of dying alone and fear of dying in pain--will continue to make the dying process one that lacks dignity and respect. In this review article we have reviewed the state of palliative and hospice care in the United States through a historical, ethical and legal perspective. We have discussed its scope in the developing world and the potential challenges.Journal of Advances in Internal Medicine 2017;06(02):38-44.
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Boquet, Jaime R., Debra Parker Oliver, Elaine Wittenberg-Lyles, Ardith Z. Doorenbos, and George Demiris. "Taking Care of a Dying Grandparent." American Journal of Hospice and Palliative Medicine® 28, no. 8 (2011): 564–68. http://dx.doi.org/10.1177/1049909111405644.
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This study aims to provide insight into the role of grandchildren as informal hospice caregivers. It presents 4 cases that highlight the challenges and perceptions of grandchildren who care for a grandparent at the end of life. A researcher met regularly with family caregivers to discuss the problems or challenges during hospice caregiving. Although each caregiver presented unique individual experiences, several themes are common among the family caregivers including fatigue, stress, guilt, and loss of the “grandchild” identity. Grandchildren caregivers often take care of 3 generations (grandparents, parents, and children) and in many cases need additional assistance to help them overcome the challenges associated with managing a household, career, family, and caregiving roles.
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Broom, Alex. "On Euthanasia, Resistance, and Redemption." Qualitative Health Research 22, no. 2 (2011): 226–37. http://dx.doi.org/10.1177/1049732311421181.
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Euthanasia/assisted dying, the desire to hasten death, and religious supportive care at the end of life are controversial issues that have been heavily debated within the academic and medical communities. Little research has been done on hospice patients’ views, despite hospices being political spaces, espousing a range of perspectives on assisted dying, religiosity, and “good deaths.” In this article I document the presence, articulation, and significance of these issues as perceived and experienced by 20 hospice inpatients in the last 4 weeks of their lives. Key themes to emerge included polarization in desire for hastened death and assisted dying in the hospice; the hospice as a morally bound space situated within particular notions of “dying well”; and the divisive character of religion as part of formalized hospice care. Theoretically, the participants’ perspectives on euthanasia/assisted dying and religiosity in the hospice provide a means of unpacking and revealing the moral economy of modern dying practices and the institutional governance and production of “timely deaths.”
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Morrow, Barbara R., J. Maier, and Walter Kelley. "Dying with Dignity: Hospice Care on the Unit." Journal of Psychosocial Nursing and Mental Health Services 27, no. 11 (1989): 10–13. http://dx.doi.org/10.3928/0279-3695-19891101-09.
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Rutland-Wallis, Martha Ann. "When Dying is Living: Hospice Pastoral Care and Education." Journal of Pastoral Care 50, no. 1 (1996): 41–48. http://dx.doi.org/10.1177/002234099605000105.
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Explores the relevance of Robert Kegan's concepts to the practice of pastoral care in a hospice context and illustrates the explanatory power of the concepts through the use of case histories. Outlines the implications of Kegan's theory for supervision in Clinical Pastoral Education within a hospice environment.
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Radbruch, Lukas, Helmut Hoffmann-Menzel, Martina Kern, and Roman Rolke. "Hospice pharmaceutical care: the care for the dying: Table 1." European Journal of Hospital Pharmacy 19, no. 1 (2012): 45–48. http://dx.doi.org/10.1136/ejhpharm-2011-000016.
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Bonavita, Anthony, Oksana Yakushko, Melissa L. Morgan Consoli, Steve Jacobsen, and Rev Laura L. Mancuso. "Receiving Spiritual Care: Experiences of Dying and Grieving Individuals." OMEGA - Journal of Death and Dying 76, no. 4 (2017): 373–94. http://dx.doi.org/10.1177/0030222817693142.
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The study examines the perceptions of interfaith spiritual care, received through a volunteer hospice organization, by 10 individuals facing death and dying. Qualitative methodology based on the Interpretive Phenomenological Analysis was used to collect and analyze the data. Four superordinate themes reflected meanings ascribed to spirituality and spiritual care in facing end of life: Vital Role of Spirituality in the End-of-Life Care, Definitions and Parameters of Spirituality and Interfaith Spiritual Care, Distinct Aspects of Interfaith Spiritual Care, and Unmet Spiritual Needs. The results expand an understanding of the role of spirituality and spiritual care as part of the hospice and palliative care through attention to individual perceptions and experiences, as well as to ways to expand attention to spirituality within the hospice care.
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Luth, Elizabeth, and Holly Prigerson. "Home Hospice Versus Other Places of Death and Caregiver Stresses." Innovation in Aging 4, Supplement_1 (2020): 418. http://dx.doi.org/10.1093/geroni/igaa057.1349.
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Abstract As of 2017, more individuals in the U.S. die at home than in any other location. Hospice care was designed to provide support for people who are dying and their families. However, dying persons may have rapidly emerging needs that home hospice does not immediately meet, thereby, exposing family members to be “first responders.” Thus, home death may result in distress and burden for dying individuals’ family members, even when hospice is involved. This study uses multivariable regression analysis to explore the relationship between place of death and stressful end-of-life experiences in a sample of 185 patients with advanced cancer. We also analyze which end-of-life experiences are associated with death location. Compared to home hospice death, we found dying in a hospital was associated with fewer caregiver exposures to, and reports of fearfulness and helplessness in response to, stressful end-of-life events. Compared to home hospice death, hospital death was associated with decreased frequency of choking, falls, confusion/delirium, and feeling the patient has had enough. It was also associated with less fearfulness about choking and falls and less hopelessness about falls, the patient having enough, and thinking the patient was dead. Our results suggest home death with hospice care, often involves undesirable experiences that result in more caregiver fear and helplessness than dying in a hospital without hospice care. Research is needed to understand how to best support family members through stressful end-of-life experiences even when supported by home hospice services.
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Seo, Kawoun. "Moderating Effect of Nurse’s Character on the Relationship between Attitudes toward Nursing Care of the Dying and Performance of Terminal Care in South Korea." Healthcare 9, no. 9 (2021): 1195. http://dx.doi.org/10.3390/healthcare9091195.
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This study aimed to investigate the moderating effect of nurses’ characteristics on the relationship between attitudes toward nursing care and terminal care performance of hospice nurses. The participants included nurses working in hospice care units in general hospitals in South Korea. Data collected from August 1 to 31, 2020 were analyzed using t-test, ANOVA, Pearson′s correlation coefficients, and hierarchical multiple regression. The performance of terminal care was positively correlated with attitudes toward nursing care of the dying (r = 0.45, p < 0.001) and nurses’ characteristics (r = 0.60, p < 0.001). There was also a positive correlation (r = 0.58, p < 0.001) between attitudes toward nursing care for dying patients and nurses′ characteristics. Nurses’ characteristics had a significant moderating effect on the relationship between attitudes toward nursing care of the dying and performance of terminal care. This means that the nurses’ character had a buffering effect on the relationship between attitudes toward nursing care of the dying and performance of terminal care in hospice care units. These findings suggest that continuous and repetitive educational programs on terminal care need to be enhanced, and strategies to strengthen attitudes toward nursing care of the dying and nurses’ character need to be included in these programs.
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Carr, Michelle, and Melanie Pratt Merriman. "Comparison of Death Attitudes among Hospice Workers and Health Care Professionals in other Settings." OMEGA - Journal of Death and Dying 32, no. 4 (1996): 287–301. http://dx.doi.org/10.2190/r4t6-d1kv-m37d-1p47.
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Since most health care professionals are trained in acute care settings where all efforts are employed to prolong life, they may not be comfortable caring for dying patients. Hospice professionals have a lot of experience dealing with dying patients. The purpose of this study was to compare and contrast the death attitudes of hospice and hospital-based health care professionals. The construct theory for the study was that comfort in dealing with dying patients is based on 1) personal beliefs about death and 2) experience dealing with dying patients. Seventy-six hospital and 106 hospice workers participated in the study and completed the thirty-four-item Death Attitude Index (DAI) and the fifteen-item Death Anxiety Scale [1]. The results showed that hospice employees had higher DAI scores (greater comfort caring for the terminally ill), as predicted. Social workers had the highest mean DAI scores and the lowest scores on the DAS (low death anxiety). Nurses aides exhibited high death anxiety and low comfort in dealing with terminal clients. For all disciplines, DAI and DAS scores were highly correlated (coefficient = −0.91). Independent variables that correlated with high DAI scores were educational level and a sacred (versus secular) value system.
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McCarthy, Ellen P., Risa B. Burns, Roger B. Davis, and Russell S. Phillips. "Barriers to Hospice Care Among Older Patients Dying With Lung and Colorectal Cancer." Journal of Clinical Oncology 21, no. 4 (2003): 728–35. http://dx.doi.org/10.1200/jco.2003.06.142.
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Purpose: To identify factors associated with hospice enrollment and length of stay in hospice among patients dying with lung or colorectal cancer. Methods: We used the Linked Medicare-Tumor Registry Database to conduct a retrospective analysis of the last year of life among Medicare beneficiaries diagnosed with lung or colorectal cancer at age ≥ 66 years between January 1, 1973, and December 31, 1996, in the Surveillance, Epidemiology, and End Results Program who died between January 1, 1988, and December 31, 1998. Our outcomes of interest were time from cancer diagnosis to hospice enrollment and length of stay in hospice care. We used Cox proportional hazards regression to adjust for demographic and clinical information. Results: We studied elderly patients dying with lung cancer (n = 62,117) or colorectal cancer (n = 57,260). Overall, 27% of patients (n = 16,750) with lung cancer and 20% of patients (n = 11,332) with colorectal cancer received hospice care before death. Median length of stay for hospice patients with lung and colorectal cancer was 25 and 28 days, respectively. Overall, 20% of patients entered hospice within 1 week of death, whereas 6% entered more than 6 months before death. Factors associated with later hospice enrollment include being male; being of nonwhite, nonblack race; having fee-for-service insurance; and residing in a rural community. Many of these factors also were associated with shorter stays in hospice. Conclusion: Although use of hospice care has increased dramatically over time, specific patient groups, including men, patients residing in rural communities, and patients with fee-for-service insurance continue to experience delays in hospice enrollment.
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Lorenz, Karl A., Kenneth E. Rosenfeld, Steven M. Asch, and Susan L. Ettner. "Charity for the Dying: Who Receives Unreimbursed Hospice Care?" Journal of Palliative Medicine 6, no. 4 (2003): 585–91. http://dx.doi.org/10.1089/109662103768253696.
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Parker-Oliver, Debra. "The Social Construction of the “Dying Role” and the Hospice Drama." OMEGA - Journal of Death and Dying 40, no. 4 (2000): 493–512. http://dx.doi.org/10.2190/yt9d-12y2-54ly-tcmn.
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The social construction of a “dying role” is emerging in response to terminal illness for which the “sick role” is no longer functional. When people are in the process of dying, in the absence of a “dying role,” they take on the rights and responsibilities of the “sick role” to which they have been socialized. This is problematic for the individual who will not get well no matter how hard the effort. Hospice, a professional community with a central purpose of bringing the drama of dying to an appropriate close, marks the transition from a sick role to a dying role. This article looks at how the hospice community directs this transition and redefinition of self for the dying and significant others. Utilizing the symbolic interactionist and phenomenlogical perspective and the sick role theory of Talcott Parsons, this view of the drama is demonstrated through stories of hospice patients.
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Renzenbrink, Irene. "The Shadow Side of Hospice Care." Illness, Crisis & Loss 15, no. 3 (2007): 245–59. http://dx.doi.org/10.1177/105413730701500306.
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The subject of this article is the dark or “shadow” side of working with dying and bereaved people in hospice and palliative care services, and the interplay of complex personal, professional, and organizational issues that can influence both the quality of patient care and the well-being of staff. Examples of how support needs have been identified and managed are drawn from the author's extensive experience as a social worker, educator, and consultant. It is argued that current understandings of staff stress lack insight into the dark side of hospice care and fail to appreciate the depth of emotional anguish that repeated exposure to human suffering can bring.
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CARLSSON, MARIA E., and BRITTA ROLLISON. "A comparison of patients dying at home and patients dying at a hospice: Sociodemographic factors and caregivers' experiences." Palliative and Supportive Care 1, no. 1 (2003): 33–39. http://dx.doi.org/10.1017/s1478951503030098.
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Objective:The aim of this study was to investigate whether there were any differences between patients who died at home and patients who died at a hospice, that is, sociodemographic variables, the family caregivers' experiences of burden, and their opinion of reasons for hospice care.Methods:The study comprises a consecutive sample of family caregivers to adult patients: (I) who were cared for by the advanced palliative home care team (APHCT) and died at home, (II) who were cared for by the APHCT and died at the Hospice, (III) who were cared for and died at the Hospice in Uppsala during a period of one year. A questionnaire was mailed to caregivers and the medical records of all the patients were analyzed.Results:The place of death differed significantly and varied according to gender and cohabitation status. Men died to a greater degree at home compared with women. The family caregivers' experiences of burden were moderate. Caregivers of patients who died at home thought that this care form has a more positive influence on the patients' quality of life than was the case in the other groups. They were also more satisfied with their own achievement. The caregivers' opinion of why patients needed hospice care was nearly the same in groups II + III, acutely developing symptoms being the most common reason.Significance of results:This study showed that women died to a lesser degree at home than men. The explanation for this is unknown and requires further investigation. It is important to establish whether female patients or male caregivers need another type of support than male patients or female caregivers, since the aim of palliative care is that every patient who wishes to die at home should have this wish fulfilled.
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Paris, Julia, and R. Sean Morrison. "Evaluating the Effects of Inpatient Palliative Care Consultations on Subsequent Hospice Use and Place of Death in Patients With Advanced GI Cancers." Journal of Oncology Practice 10, no. 3 (2014): 174–77. http://dx.doi.org/10.1200/jop.2014.001429.
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Davidoff, Amy J., Maureen Canavan, Shi-Yi Wang, Elizabeth Horn Prsic, Maureen Saphire, and Carolyn J. Presley. "End-of-life (EOL) trajectories among older adults dying with lung cancer (LC)." Journal of Clinical Oncology 38, no. 15_suppl (2020): e24008-e24008. http://dx.doi.org/10.1200/jco.2020.38.15_suppl.e24008.
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e24008 Background: Medicare decedents often receive intensive care during the last month (mth) of life. There is little information on longer (6-mth) EOL trajectories of care intensity. Area hospice use rates may reflect supply and/or patient and physician preferences, and may influence patterns for individual decedents. Methods: Using SEER-Medicare linked registry and claims data, we selected decedents diagnosed with LC between 2008-2013 who survived ≥6-mths and died between 2008-2014. We linked Dartmouth Atlas data on hospital referral region (HRR) % cancer decedents with hospice use. Each mth we assessed claims to identify cancer-directed (CD) care (chemotherapy or radiation) and pharmacologic or other palliative care services (PCS) and assigned decedents to either CD only, PCS only, concurrent CD & PCS, full-mth inpatient (IP) or full-mth hospice. We ordered monthly care intensity from high to low (IP > CD only > concurrent CD & PCS > PCS only > hospice). Using the indicators arrayed by calendar mth, we assigned each decedent to 1 of 6 trajectories: stable (6-mth continuous) hospice, stable PCS only, stable CD only or concurrent CD & PCS, decreasing intensity, increasing intensity, and mixed (multiple directional shifts). Multinomial logistic regression estimated associations between area hospice rates, socio-demographics, and comorbidity with EOL trajectory, controlling for 1st line therapy, and diagnosis stage. Results: Our sample (N = 24,342) was predominantly male (53.7%), age ≥75 years (59.4%), and non-Hispanic white (80.5%); 19.1% lived in HRRs where ≤50% of cancer decedents received any hospice care. Trajectories were 7% stable hospice, 26% stable PCS only, 4% stable CD; 29% decreasing intensity, 9% increasing intensity, and 26% mixed. Relative to stable hospice, higher HRR-level hospice rates were associated with decreasing EOL intensity; higher age, female, and married were associated with increased probability of stable hospice enrollment); Black, non-Hispanic decedents had higher risk of increasing intensity (aRRR: 1.39, 95% confidence interval: 1.09-1.76, p < .01) and mixed patterns. Conclusions: Among older decedents with LC, only 62% had 6-mth EOL trajectories indicating low- (stable hospice or PCS only) or decreasing intensity, but few received persistent CD care. Area hospice use patterns, demographic characteristics and health status were associated with EOL trajectory. Additional research is needed to identify subgroups at risk of high or increasing intensity trajectories, and interventions that may shift trajectories towards lower intensity at EOL.
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Kuberowa, Helena, and Maria Sidorowa. "The role of nurses in palliative and hospice care." Medical Science Pulse 7, no. 4 (2013): 10–17. http://dx.doi.org/10.5604/01.3001.0003.3145.
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Introduction: The role of nurses in palliative and hospice care especially with the terminally ill and dying patients in hospice.Aim of the study: To show the importance and irreplaceable role of nurses in meeting the needs of a patient.Material and methods: The survey was performed among nurses working with terminally ill and dying people in hospices in the Czech Republic and Slovakia.Results: Obtained results were analyzed by means of questionnaires, where there are opinions and attitudes of nurses who take care of patients in the terminal stages of various diseases.Conclusions: Although the survey shows significant differences in providing hospice care in Slovakia and the Czech Republic, we can conclude the same result, which is that the role of nurses in the case of care of the terminally ill is extremely important.
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EISENBERGER, ANDREW, and JOMARIE ZELEZNIK. "Care planning for pressure ulcers in hospice: The team effect." Palliative and Supportive Care 2, no. 3 (2004): 283–89. http://dx.doi.org/10.1017/s1478951504040374.
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Objective: The standards of care for patients at risk for or with a pressure ulcer in hospitals and nursing homes focus on prevention and ulcer healing using an interdisciplinary approach. Although not a primary hospice condition, pressure ulcers are not uncommon in dying patients. Their management in hospices, particularly the involvement of family caregivers, has not been studied. The objective of this study is to identify the factors that influence care planning for the prevention and treatment of pressure ulcers in hospice patients and develop a taxonomy to use for further study.Methods: A telephone survey was conducted with 18 hospice directors of clinical services and 10 direct-care nurses. Descriptive qualitative data analysis using grounded theory was utilized.Results: The following three themes were identified: (1) the primary role of the hospice nurse is an educator rather than a wound care provider; (2) hospice providers perceive the barriers and burdens of family caregiver involvement in pressure ulcer care to be bodily location of the pressure ulcer, unpleasant wound characteristics, fear of causing pain, guilt, and having to acknowledge the dying process when a new pressure ulcer develops; and (3) the “team effect” describes the collaboration between family caregivers and the health care providers to establish individualized achievable goals of care ranging from pressure ulcer prevention to acceptance of a pressure ulcer and symptom palliation.Significance of results: Pressure ulcer care planning is a model of collaborative decision making between family caregivers and hospice providers for a condition that occurs as a secondary condition in hospice. A pressure ulcer places significant burdens on family caregivers distinct from common end-of-life symptoms whose treatment is directed at the patient. Because the goals of pressure ulcer care appear to be individualized for a dying patient and their caregivers, the basis of quality-of-care evaluations should be the process of care rather than the outcome of an incident pressure ulcer.
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Raudonis, Barbara M., and Jane Marie Kirschling. "Family Caregivers’ Perspectives on Hospice Nursing Care." Journal of Palliative Care 12, no. 2 (1996): 14–19. http://dx.doi.org/10.1177/082585979601200204.
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In hospice nursing, dying persons and their families are the unit of care and the focus of nursing interventions which are provided within the context of interdisciplinary care. The key component of hospice nursing is the interaction between the nurse, the terminally ill person, and the family. This naturalistic study was designed to describe the family caregiver's relationships between the hospice patient, the nurse, and themselves. The intent was to determine if family caregivers would develop empathic relationships with the hospice nurses. Nine bereaved family caregivers participated in the study. All were bereaved at least six months prior to being interviewed. The major finding of the study was that family caregivers perceived the hospice nurses as part of the family. The hospice nurses were characterized as respectful, kind, caring, clinical experts whose presence and interventions helped meet the needs of the family experiencing death.
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Hayslip, Bert. "The Measurement of Communication Apprehension regarding the Terminally Ill." OMEGA - Journal of Death and Dying 17, no. 3 (1987): 251–61. http://dx.doi.org/10.2190/w4hk-wln6-lpla-lyta.
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In order to establish the reliability and validity of a scale assessing communication apprehension regarding the dying, measures of generalized communication apprehension (CA), communication apprehension regarding the dying (CA-Dying), and death anxiety were administered to fifty-nine individuals, twenty-nine of whom had enrolled in an eight-week hospice volunteer training program, and thirty of whom were on the hospice mailing list. Results suggested that the CA-Dying scale possessed more than adequate reliability (internal consistency, test-retest) and validity (correlations with death fear, susceptibility to volunteer training program effects). It was concluded that the CA-Dying scale may serve as a useful index of difficulties caregivers have in communicating with the terminally ill.
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Catlin, A. "Care of the dying newborn: perinatal hospice, research, and practice." Obstetrics & Gynecology 97, no. 5 (2001): S55. http://dx.doi.org/10.1016/s0029-7844(01)01276-5.
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Naďová, Monika, and Veronika Likavčanová. "Hospice - alternative taking care of terminally diseased and dying people." Kontakt 10, no. 1 (2008): 52–61. http://dx.doi.org/10.32725/kont.2008.007.
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Levy, Kathryn, Pei C. Grant, Christopher W. Kerr, David J. Byrwa, and Rachel M. Depner. "Hospice Patient Care Goals and Medical Students’ Perceptions: Evidence of a Generation Gap?" American Journal of Hospice and Palliative Medicine® 38, no. 2 (2020): 114–22. http://dx.doi.org/10.1177/1049909120934737.
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Background: The ability to perceive care goals of the dying may be an indicator of future quality patient-centered care. Research conducted on end-of-life goals indicates discrepancies between patients and physicians. Objective: The aim of this study is to compare end-of-life care goals of hospice patients and medical student perceptions of patient care goals. Design: Hospice patients and medical students were surveyed on their care goals and perceptions, respectively, using an 11-item survey of goals previously identified in palliative care literature. Medical student empathy was measured using the Interpersonal Reactivity Index. Settings/Participants: Eighty hospice patients and 176 medical students (97 first-year and 79 third-year) in a New York State medical school. Results: Medical students ranked 7 of the 11 care goals differently than hospice patients: not being a burden to family ( p < .001), time with family and friends ( p = .002), being at peace with God ( p < .001), dying at home ( p = .004), feeling that life was meaningful ( p < .001), living as long as possible ( p < .001), and resolving conflicts ( p < .001). Third-year students were less successful than first-year students in perceiving patient care goals of hospice patients. No significant differences in medical student empathy were found based on student year. Conclusions: Medical students, while empathetic, were generally unsuccessful in perceiving end-of-life care goals of hospice patients in the psychosocial and spiritual domains. Differences impeding the ability of medical students to understand these care goals may be generationally based. Increased age awareness and sensitivity may improve future end-of-life care discussions. Overall, there is a need to recognize the greater dimensionality of the dying in order to provide the most complete patient-centered care.
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Glicken, Anita, and Gerald Merenstein. "A Neonatal End-of-Life Palliative Protocol— An Evolving New Standard of Care?" Neonatal Network 21, no. 4 (2002): 35–36. http://dx.doi.org/10.1891/0730-0832.21.4.35.
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IN 1979 THE CHILDREN’ S Hospital, Denver began to address the needs of the unfortunate group of infants who exhibit evidence of poor prognosis and for whom the question is raised whether any more should be done to prolong their lives.1 This program for the NICU was based on concepts first introduced and popularized by the hospice movement.2,3 It was recognized that generally NICU staff are concerned with neonatal survival—a rescue mode of care. Staff are often ill-equipped to provide adequate care to the family of the dying infant. This program proposed a new approach to the very difficult issues involved in the care of these very sick and dying infants. The Neonatal Hospice Program was a comprehensive plan focusing on four main areas: decisionmaking process and shift to palliative care, creation of a home-like, family room setting for the infant and family, involvement of family in the dying process and hospice training for NICU staff. Over the past 20 years, elements of this program have been implemented in many NICUs. However, the adaptation of a comprehensive program for palliative neonatal care has not been universally implemented. NICU staff and families of dying infants continue to seek change in hospital practice. Catlin and Carter have undertaken important research in exploring current trends in the care for the infant from whom life support is withdrawn or withheld.
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TANG, SIEW TZUH, RUTH MCCORKLE, and ELIZABETH H. BRADLEY ph.d. "Determinants of death in an inpatient hospice for terminally ill cancer patients." Palliative and Supportive Care 2, no. 4 (2004): 361–70. http://dx.doi.org/10.1017/s1478951504040489.
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Objective:Despite the strong emphasis on home-based end-of-life care in the United States and the recognition of dying at home as a gold standard of quality of care, hospice home care is not a panacea and death at home may not be feasible for every terminally ill cancer patient. Admission to an inpatient hospice and dying there may become a necessary and appropriate solution to distressing patients or exhausted families. However, the factors associated with death in an inpatient hospice have not been examined in previous studies.Methods:A prospective cohort study was conducted to investigate the determinants of death in an inpatient hospice for terminally ill cancer patients. Approximately two-fifths (40.8%) of the 180 terminally ill cancer patients in this study died in inpatient hospices over the 3-year study period.Results:Results from Cox proportional hazards model with adjustment for covariates revealed several factors that were significantly associated with dying in inpatient hospice, as opposed to home, in a nursing home, or in the hospital. Patients were more likely to die in an inpatient hospice if they received hospice care before death (hazard ratio [HR] = 7.32, 95% confidence interval [CI]: 3.21–16.67), if they had a prestated preference to die in an inpatient hospice (HR = 4.86, 95% CI: 2.24–10.51), if they resided in New Haven County (HR = 1.70, 95% CI: 1.00–2.93), or if they experienced higher levels of functional dependency (HR = 1.05, 95% CI: 1.02–1.08).Significance of results:The high prevalence of inpatient hospice deaths for terminally ill cancer patients in this study was related to the local health care system characteristics, health care needs at the end of life, and personal preference of place of death. Findings from this study may shed light on future directions for developing end-of-life care tailored to the needs of cancer patients who are admitted to hospices and eventually die there.
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Castle, Nicholas G. "Innovations in Dying in the Nursing Home: The Impact of Market Characteristics." OMEGA - Journal of Death and Dying 36, no. 3 (1997): 227–40. http://dx.doi.org/10.2190/lkgl-517d-mbna-ux9d.
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During the 1980s nursing homes emerged as a dominant site of death for the elderly. This may precipitate more innovative approaches to death and dying in the nursing home and may account for the recent emergence of hospice care and pain management programs in nursing homes. However, the provision of hospice care and pain management in nursing homes are trends about which we have virtually no information. As a first step in examining these phenomena we provide a descriptive analysis of nursing homes that provide hospice care or pain management programs and an analysis of the impact of market characteristics as determinants of nursing homes providing them. Our findings suggest that the provision of pain management programs and hospice care are becoming prevalent in nursing home settings and that nursing homes are quite sensitive to their market environment indicating that policy changes could encourage further increases in these service innovations in death and dying.
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Lackan, Nuha A., Jean L. Freeman, and James S. Goodwin. "Hospice Use by Older Women Dying with Breast Cancer between 1991 and 1996." Journal of Palliative Care 19, no. 1 (2003): 49–53. http://dx.doi.org/10.1177/082585970301900109.
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The purpose of this study was to assess the use of hospice by women dying with breast cancer as a function of time period, geographic area, and patient characteristics. We used data from the linked Surveillance, Epidemiology, and End Results (SEER)-Medicare database to study hospice care use in the United States in women aged 65 and older, diagnosed with breast cancer from 1986 to 1996, who died from 1991 to 1996. Of the 25,161 women who met those criteria, 5,198 (20.7%) were enrolled in hospice before they died. The rate of hospice use in this population increased from 11.5% in 1991 to 27.1% in 1996. Use of hospice care was inversely related to age and was higher among those who were married. There were no differences in use by ethnicity. Rates of use varied significantly by geographic area. Future research should further examine why rates of hospice use differ by geographic area and certain patient characteristics.
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Powell, Jason L. "The Social Philosophical Dimensions of Hospice Care." International Letters of Social and Humanistic Sciences 52 (May 2015): 76–80. http://dx.doi.org/10.18052/www.scipress.com/ilshs.52.76.
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Hospice care is a type of care and philosophy of care that focuses on the palliation of a terminally ill or seriously ill patient's pain and symptoms, and attending to their emotional and spiritual needs (Powell 2014). The concept of hospice has been evolving since the 11th century. Then, and for centuries thereafter, hospices were places of hospitality for the sick, wounded, or dying, as well as those for travellers and pilgrims (Dossey 1999). The modern concept of hospice includes palliative care for the incurably ill given in such institutions as hospitals or nursing homes, but also care provided to those who would rather spend their last months and days of life in their own homes (McCue and Thompson 2006).
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Hoffmann, Diane E., and Anita J. Tarzian. "Dying in America — An Examination of Policies that Deter Adequate End-of-life Care in Nursing Homes." Journal of Law, Medicine & Ethics 33, no. 2 (2005): 294–309. http://dx.doi.org/10.1111/j.1748-720x.2005.tb00495.x.
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The quality of end-of-life care in this country is often poor. There is abundant literature indicating that dying individuals do not receive adequate pain medication or palliative care, are tethered to machines and tubes in a way that challenges their dignity and autonomy, and are not helped to deal with the emotional grief and psychological angst that may accompany the dying process. While this is true for individuals in many settings, it seems to be especially true for individuals in nursing homes. This is somewhat puzzling given that (1) considerable resources have been devoted to bringing public attention to this problem, (2) we have the knowledge and expertise to provide such care, and (3) we have a government-financed benefit that covers this type of care - the Medicare hospice benefit (MHB).While utilization of hospice care has increased during the last decade, there is considerable evidence that hospice care remains underutilized particularly in the long term care setting.
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Goddard, Maria K. "The Importance of Assessing the Effectiveness of Care: The Case of Hospices." Journal of Social Policy 22, no. 1 (1993): 1–17. http://dx.doi.org/10.1017/s0047279400019085.
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ABSTRACTThe hospice sector has expanded and diversified rapidly in recent years and has become associated with the provision of highly specialised, good quality care for the dying. However, as resources for health and social care are increasingly stretched, it will become necessary to demonstrate, rather than to assert, that the hospice sector provides superior care. This paper considers critically the methodology that has been used in the evaluation of the effectiveness of hospice care, focusing on the design of evaluations, what is measured, who measures it and how it has been measured in practice.
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Miller, Margaret A. "Presencing: Nurses Commitment to Caring for Dying Persons." International Journal of Human Caring 2, no. 3 (1998): 24–31. http://dx.doi.org/10.20467/1091-5710.2.3.24.
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This article is based in the authors’ interpretive study of hospice and home care nurses which uncovered shared meanings and common practices of how the nurses remained faithful to caring for dying persons who had refused artificially administered nutrition and /or hydration. Despite knowledge of and agreement with ethical and professional positions that supported the client’s decision, caregivers frequently experienced emotional discomfort when dying persons refused food or fluids. Without the option of offering the sustenance of food and fluids as a caring, comforting practice, nurses sought ways of expressing fidelity and not abandoning the dying persons and their families. When the interviews of hospice and home care nurses were analyzed, several themes of attending and being present of dying persons emerged. The nature of presence was evident in the nurses’ stories of involvement with dying persons, families, and other professionals as the margins of the individual’s life and the nurses’ professional practice were revealed. The nurses’ reflections on the giving voice to their experiences during the interviews seemed to lead to a renewed commitment to being present for other dying persons.
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Paris, Julia, Qingling Du, and R. Sean Morrison. "Evaluating the role of palliative care consultations in patients with advanced gastrointestinal cancers." Journal of Clinical Oncology 31, no. 31_suppl (2013): 6. http://dx.doi.org/10.1200/jco.2013.31.31_suppl.6.
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6 Background: Though research shows that patients with terminal illnesses prefer to die at home, over 60% of patients with advanced cancer are hospitalized in the last month of life. Additionally, less than half of these patients receive any form of hospice care at the end of life, despite its demonstrated potential to improve quality of care. Inpatient palliative care (PC) consultations may serve as a bridge from hospitalization to receiving the kind of end-of-life care that patients prefer. Tumors of the gastrointestinal (GI) system include some of the most common and deadliest cancers and these patients can benefit from PC services, especially when the disease has reached an advanced stage. Our objective was to compare the effectiveness of inpatient PC consultations vs. usual care on post-discharge outcomes in patients with advanced GI cancers. Methods: 202 adults with advanced GI cancers admitted to 5 US hospitals were followed prospectively through hospitalization and 6 months post-discharge. 82 patients received a palliative care consult during hospitalization. Propensity scores were used to match treated to control patients, with exposure to a palliative care consult as the intervention. Outcome measures included: referral to hospice, subsequent ER visit, hospital readmission, and place of death. Results: Significantly more patients in the treatment group were referred to hospice upon hospital discharge (38% vs. 8%, p=0.000). 70 patients died in the 6-month follow-up period. Receiving a PC consult increased the odds of dying at home 3-fold (OR=2.9, p=0.046, 95% CI 1.02-8.44) and decreased the odds of dying in a hospital by 85% (OR=0.159, p=0.002, 95% CI 0.05-0.52). At 2 and 6 months post-discharge, significantly more patients in the treatment group were receiving hospice services at death (75% vs. 18%, p=0.001 and 82% vs. 24%, p=0.000 respectively). There were no significant differences between the two groups regarding hospital readmission and ER visits post-discharge. Conclusions: PC consults for patients with advanced GI cancers was associated with increased referral to hospice, decreased likelihood of dying in a hospital and increased likelihood of dying at home.
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Kinzbrunner, Barry M. "Hospice: 15 Years and Beyond in the Care of the Dying." Journal of Palliative Medicine 1, no. 2 (1998): 127–37. http://dx.doi.org/10.1089/jpm.1998.1.127.
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Cheng, Benjamin Hon Wai, Michael Mau Kwong Sham, Kwok Ying Chan, Cho Wing Li, and Ho Yan Au. "Intensive Palliative Care for Patients With Hematological Cancer Dying in Hospice." American Journal of Hospice and Palliative Medicine® 32, no. 2 (2013): 221–25. http://dx.doi.org/10.1177/1049909113512412.
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Fairfield, Kathleen M., Kimberly M. Murray, Heidi R. Wierman, et al. "Disparities in hospice care among older women dying with ovarian cancer." Gynecologic Oncology 125, no. 1 (2012): 14–18. http://dx.doi.org/10.1016/j.ygyno.2011.11.041.
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Teno, Joan M., Pedro L. Gozalo, Ian C. Lee, et al. "Does Hospice Improve Quality of Care for Persons Dying from Dementia?" Journal of the American Geriatrics Society 59, no. 8 (2011): 1531–36. http://dx.doi.org/10.1111/j.1532-5415.2011.03505.x.
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Schrader, Susan L., Margot L. Nelson, and LuAnn M. Eidsness. "Dying to Know: A Community Survey about Dying and End-of-Life Care." OMEGA - Journal of Death and Dying 60, no. 1 (2010): 33–50. http://dx.doi.org/10.2190/om.60.1.b.
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A community survey of Sioux Falls, South Dakota was conducted in 2004 to understand knowledge, attitudes, and preferences about end-of-life (EOL) care and to generate conversations about these topics. Questionnaires were sent to 5,000 randomly selected households, with a return of 1,042 (21%). Most respondents said preparation for EOL is very important, yet far fewer had taken steps to ensure their EOL wishes would be known or met. These disparities are examined, with recommendations for future research and public policy. Bivariate analyses revealed significant differences by age, sex, education, marital status, and religiosity. Community studies are important for baseline understanding, evoking conversation, and setting goals for change. Public education is needed to strengthen understandings of hospice care, and professional education is needed to raise awareness about practitioners' roles in resolving discrepancies between what people want and what they get at end of life.
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Hillier, Richard. "Hospice U.K. – 2000 AD." Journal of Palliative Care 1, no. 1 (1985): 9–15. http://dx.doi.org/10.1177/082585978500100103.
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This paper examines the possible shape of the hospice movement in the year 2000 AD. The number of patients dying from cancer will be similar to today, and cancer will remain the most common disease referred to hospices. After reviewing the key developments during the past fifteen years, the effects of national policy and financial constraint on future developments are examined. Most advances will stem from better organization and more realistically staffed hospices and hospice care teams. This will encourage greater flexibility and imaginative development. Advances will be made in rehabilitation, halfway houses for the elderly frail, and greater involvement with mainstream medical services. The role of home care teams, hospital support teams and day care, coupled with the better use of volunteers will maintain more patients at home and reduce the bed norms to 25 per million. A statement on education and training is made.
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Conant, Loring, and Arlene Lowney. "The Role of Hospice Philosophy of Care in Nonhospice Settings." Journal of Law, Medicine & Ethics 24, no. 4 (1996): 365–68. http://dx.doi.org/10.1111/j.1748-720x.1996.tb01880.x.
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Many advances in public health and medical technology have contributed to the improved wellbeing and overall longevity of Americans. Such benefits, however, have been offset by a change in the nature and prolongation of the dying process. Daniel Callahan offers a challenge to caregivers in his observation of violent death by technological attenuation, and he sets an agenda to identify a more appropriate approach to the needs of the dying.Over the past quarter century, hospice has increasingly been used as a resource for care at the end of life. However, according to 1995 estimates by the National Hospice Organization (NHO), hospice care presently accounts for only about 15 percent of the care of terminally ill patients in the United States. We will review issues of access and use of hospice services and examine the various institutional, professional, societal, and cultural barriers to hospice principles of care, and consider various options to promote optimal care at the end of life.
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ROKACH, AMI, RAAN MATALON, ARTEM SAFAROV, and MICHAELA BERCOVITCH. "The loneliness experience of the dying and of those who care for them." Palliative and Supportive Care 5, no. 2 (2007): 153–59. http://dx.doi.org/10.1017/s1478951507070228.
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Objective: The study compared the qualitative aspects of the loneliness experience of the dying, their caregivers, and the general population.Method: The patients were recruited in an oncological hospice in Israel, and, despite being on their deathbed, agreed to participate in the study. Thirty-seven cancer-stricken patients, 78 caregivers, and 128 participants from the general population volunteered to partake in the study. They answered, anonymously, a 30-item questionnaire and were asked to endorse those items that described their experience of loneliness.Results: Results suggested that the three populations did, indeed, differ in their experience of loneliness. More specifically, dying patients and their caregivers had significantly higher subscale scores on the Growth and Discovery and the Self-alienation subscales than the general population did. It was also found that the number of hospitalization days was significantly negatively correlated to the Emotional Distress and Self-alienation subscales.Significance of results: The present results indicate that loneliness is experienced differently in or out of the hospice and by the dying patient, his or her caregiver, and the general population. This may be the first study to examine the qualitative aspects of the loneliness experienced by the dying and by their caregivers. More research is needed to replicate the present study, using larger samples.
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Thomas, Diane M., and Brenda Moretta Guerrero. "Terminal Restlessness in the Dying: Hospice Attitudes and Practice." OMEGA - Journal of Death and Dying 46, no. 1 (2003): 77–90. http://dx.doi.org/10.2190/n2yb-104b-hke0-4rv8.
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An exploratory study was conducted to ascertain hospice attitudes and practices related to terminal restlessness, a syndrome found in an estimated 1 to 2 percent of dying patients (Kaye, 1997). Three hundred two participating hospices responded to survey questions. Chi-square analyses were conducted to explore frequency differences between the independent variable, utilization of a terminal restlessness tool, and each of the dependent variables: location, census, utilization of a treatment protocol, and number of cases of terminal restlessness reported. Chi-square analysis was also conducted to explore a frequency difference between the independent variable, average daily census, and the dependent variable, number of cases of terminal restlessness reported. With the exception of two predicted relationships, there were no significant differences in the proportion of responses between the independent and dependent variables. Implications of these results for hospice attitudes and practice are discussed. Suggestions are made for standardization of identification, assessment, and treatment of terminal restlessness.
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GRUMANN, MAREILE M., and DAVID SPIEGEL. "Living in the face of death: Interviews with 12 terminally ill women on home hospice care." Palliative and Supportive Care 1, no. 1 (2003): 23–32. http://dx.doi.org/10.1017/s1478951503030116.
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Objective:To determine how home hospice patients deal with their impending death and whether there is a need for greater involvement of mental health professionals in the care of patients dying at home.Method:In a pilot study, 12 female home hospice patients with advanced cancer and a median survival time of 42 days were assessed using structured interviews and brief questionnaires. Topics of inquiry included facing death, fear of death, pain, fatigue, depression, and anxiety. Three key themes were extracted from the information reported by the women: (1) confronting the issue of death, (2) fear of dying and death and its correlates, and (3) spirituality/religious faith and its role in mitigating fear of death.Results:First, all subjects reported thinking about their approaching death. For half of them, this thought was bothersome and these women were frequently troubled by unresolved issues and higher anxiety, pain, and fatigue. The majority of the subjects expressed a desire to actively discuss their impending death. Second, more than half of the patients reported being afraid of death and high death anxiety was associated with fear of dying in pain, high peak or usual pain, unresolved issues, and difficulty in parting with family in death. Third, most subjects experienced their religious faith as an important source of comfort and strength.Significance of results:A substantial subgroup of home hospice patients expressed problems dealing with their approaching death. These problems are amenable to psychological treatment, such as fear of death, unresolved issues, parting with family, and pain. The findings, thus, highlight the need for close collaboration of mental health professionals with home hospice institutions.
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Mulville, Andrew K., Nancy N. Widick, and Neeharika Srivastava Makani. "Timely Referral to Hospice Care for Oncology Patients: A Retrospective Review." American Journal of Hospice and Palliative Medicine® 36, no. 6 (2018): 466–71. http://dx.doi.org/10.1177/1049909118820494.
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Hospice care is medical care provided to terminally ill patients with a life expectancy of 6 months or less. Hospice services include symptom control, pain management, palliative care, and other supportive services such as providing for home equipment or oxygen; however, it does not provide for life-prolonging therapies such as chemotherapy. Although oncologic benchmarks suggest patients should be enrolled in hospice 3 months prior to death, studies show that most hospice referrals are being made too late. These shorter stays in hospice result in increased cost of care especially at the end of life with most patients dying on aggressive treatments in the hospital. Thus, identifying barriers to hospice placement is critical in improving the referral process and enhancing the quality of end-of-life care. This retrospective study collected data on 418 oncologic patients who passed in 2015 and categorized patients based on hospice status at the time of death. Our study found that the demographics between hospice and nonhospice patients were not significantly different. Hospice patients spent a median of 10 days in hospice and 71% (n = 161) of patients were in hospice 30 days or less. Additionally, 56% of patients were in hospice 10 days or less. Increased education for patients and health-care providers along with better utilization of palliative care services and incorporating a nurse navigator to help with transitioning patients to hospice would improve earlier referral to hospice care and enhance patients’ quality of life.
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Perry, Joshua E., and Robert C. Stone. "In the Business of Dying: Questioning the Commercialization of Hospice." Journal of Law, Medicine & Ethics 39, no. 2 (2011): 224–34. http://dx.doi.org/10.1111/j.1748-720x.2011.00591.x.
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In our society, some aspects of life are off-limits to commerce. We prohibit the selling of children and the buying of wives, juries, and kidneys. Tainted blood is an inevitable consequence of paying blood donors; even sophisticated laboratory tests cannot supplant the gift-giving relationship as a safeguard of the purity of blood. Like blood, health care is too precious, intimate, and corruptible to entrust to the market.The hospice movement in the United States is approximately 40 years old. During these past four decades, the concept of holistic, multidisciplinary care for patients (and their families) who are suffering from a terminal illness has evolved from a modest, grassroots constellation of primarily volunteer-run and community-governed endeavors to a multimillion dollar industry where the surviving nonprofits compete with for-profit providers, often publicly traded, managed by M.B.A.-trained executives, and governed by corporate boards. The relatively recent emergence of for-profit hospice reflects an increasing commercialization of health care in the United States, the potentially adverse impact of which has been well documented.