Hospice care in the United States

Hospice affirms the concept of palliative care as an intensive program that enhances comfort and promotes quality of life for individuals and their families. When cure is no longer possible, hospice recognizes that a peaceful and comfortable death is an essential goal of health care. Hospice believes that death is an integral part of the life cycle and that intensive palliative care focuses on pain relief, comfort, and enhanced quality of life for the terminally ill. Hospice also recognizes the potential for growth that exists within the dying experience for individuals and their families and seeks to protect and nurture this potential.     

History of the National Hospice Organization

The National Hospice Organization grew out of efforts by the founders of the earliest hospice programs in the United States to protect their emotional investments in hospice care, to advocate for hospice interests in Congress and other public policy forums, to define standards for the fledgling movement, and to provide education on the nuts and bolts of running hospice programs for others who were interested in starting hospices in communities from coast to coast. Unlike the model of St. Christopher’s Hospice in England, which began as a free-standing in-patient facility and later added home care services, most U.S. hospices started as home care-based programs, often largely manned by volunteers. Among the crucial issues that have dominated the work of NHO during its first 21 years were passage and maintenance of the Medicare hospice benefit, ideological battles over the hospice philosophy, and efforts to extend hospice care to other populations, such as people with AIDS. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>]     

Patients' Autonomy at the End of Life: A Critical Review

Context

The predominating definition of autonomy as a capacity to make an independent rational choice may not be suitable for patients in palliative care. Therefrom arises the actual need for more contextualized perspectives on autonomy to promote the quality of life and satisfaction with care of terminally ill patients.

Ketamine for Palliative Sedation in the Emergency Department

Background

Palliative sedation to treat severely distressing symptoms in those with a poor prognosis is well-accepted.

Objective

We discuss palliative sedation in the Emergency Department and the use of ketamine.

Case Report

We present the case of a patient with angioedema of the tongue and severe respiratory distress. The patient's nursing home was unable to control her symptoms and she was transferred to the Emergency Department. The patient received fentanyl 50 μg i.v. and ketamine 50 mg i.v. every 5 min until adequate palliative sedation was achieved.

Conclusion

Ketamine can be considered for Emergency Department palliative sedation in selected patients. Identifying and caring for unmet palliative care needs is an important skill for Emergency Medicine.     

Palliative care in the emergency department: An oxymoron or just good medicine?

In 2006, the American Board of Emergency Medicine co‐sponsored hospice and palliative medicine as a recognized medical subspecialty. There is recognition of the need for these skills to be available in EDs in the USA. This article discusses the rationale for integrating a palliative approach in the ED. We need to engage our palliative care colleagues to increase clinical support to meet the needs of these vulnerable patients and to foster collaborative educational opportunities.     

The experience of family caregivers caring for a terminal patient at home: A research review

IntroductionOne of the key aspects of the care of terminal patients is care delivered in their own home. Increasingly, the process of dying is moving from hospitals to homes. Although this process is directly related to the support of the social health environment, the involvement of family caregivers is essential. Given the impact that caring for a terminally ill family member has on people’s lives, it is necessary to comprehend their personal experience in a holistic way.ObjectiveTo reveal the experience of family caregivers who are caring for a terminal patient in their home.DesignA qualitative systematic review of articles published from 2000 to 2015 was conducted between March and September of 2015. The following databases were consulted: CINAHL, PubMed, PsycINFO, Cochrane Library, SciELO and Dialnet. After applying the selection criteria, 12 relevant studies were identified. Subsequently, two of the reviewers jointly performed a qualitative content analysis of them.ResultsThe analysis permitted the caregivers’ experiences to be grouped into five themes: 1) Learning the diagnosis: uncertainty about the future and the prospects of death; 2) Feeling the physical and emotional burden of care; 3) Experiencing a limited life; 4) Redefining the relationship with the person being cared for; and 5) Valuing the importance of the support of the environment.ConclusionsThis review shows that caring for a family member with advanced illness in the home has a great impact on the personal realm of the caregiver and in the relationship he or she maintains with the ill family member. Being involved in the process of dying translates into a prodigious physical and psychological effort, together with a substantial limitation on the normal development of their own life. Additionally, the caregiver must face and establish a new relationship with the family member, in accordance with the new ethos, without the help of a formal structure providing the necessary support. These results may help to focus attention on family caregiver needs and to develop the knowledge necessary to meet the current demands of end-of-life health care in the home.     

Teleological care and the last years of life

The final years of life present challenges for care. In middle‐/high‐income countries, the percentage of people of advanced age in the population is growing, and the dying process continues to become more complex and protracted. We propose that a new understanding of care, ‘teleological care’, be considered as an important response to the contemporary challenges of the final years of life. Teleological care is a philosophy of care built around the root idea of a telos (i.e. end) in three senses: (1) the end of life as a temporal limit; (2) the ends of life as the individual's purpose and meaning; (3) the end of life as the meaning of life as a whole. In its practice, teleological care adheres to principles of (1) fidelity of practitioner to patient; (2) generalism of practitioners; and (3) coordination of care within existing services. With this philosophy and practice, care is administered by generalist health care professionals arranging for flow between care that attempts to reverse, stop or slow the disease process when appropriate, with care to address symptoms, and with care that responds to the difficulties of dying. Teleological care involves already existing programmes in roughly their present forms, serving as an overarching layer of organization added to the existing systems. Teleological care refocuses the concept of care to the patient's perspective with emotional, spiritual and practical support for facing the end of life, and a space for narrative and reflection within a wider circle of care.     

Using Neuroleptics to Treat Delirium in Dying Cancer Patients at a Cancer Center in Saudi Arabia

Neuroleptics are commonly used for treating delirium as a common problem in terminally ill cancer patients. However, prescribing patterns are believed to substantially vary among health professionals. The aim of this study is to determine the pattern of prescribing neuroleptics for treating delirium in cancer patients dying in a palliative care unit in Saudi Arabia. We reviewed the medical records of adults with advanced cancer who died in the palliative care unit over 23 months. In addition to patients’ demographics, data collection included the pattern of prescribing neuroleptics for the treatment of delirium during the last week of life. For the 271 patients included (57.6% females), the median age was 54 years. Although 62% of patients were on around-the-clock (ATC) neuroleptics to treat delirium, about two thirds of these were requiring rescue doses (PRN [pro re nata]) as well. The ATC neuroleptics included haloperidol alone (89.3%), levomepromazine alone (2.4%), or both (8.3%). All neuroleptics were administered via the parenteral route. On average, the maximum daily doses of the ATC neuroleptics were 4 mg for haloperidol and 15.5 mg for levomepromazine. Patients with primary or metastatic brain cancers were less likely to be on neuroleptics (P < .0001). The authors conclude that in their palliative care unit, haloperidol is by far the most commonly used neuroleptic, followed by levomepromazine, to treat the common problem of delirium in patients dying with advanced cancer. The generally low doses of neuroleptics required may be attributed to several factors in this population, including cultural motives.     

End of Life Care and Decision Making: How Far We Have Come,How Far We Have to Go

While enormous progress has been made in improving the quality of care and the decision-making process for patients at the end of life, as a society we still have far to go to ensure that dying patients and their families have a comfortable and dignified death. In particular, reexamination and reconfiguration of our current decision framework is essential as our elderly population with chronic disease and slowly fatal conditions expands. With less certain disease paths and more complex and ambiguous choices, the growth of this geriatric population challenges us to develop a broader conceptualization of end of life care planning, so that end of life considerations are integrated into a larger anticipatory framework addressing options and needs as patients gradually decline. Within this framework hospice becomes a natural, integrated option along a continuum of care planning, rather than an abrupt alternative at a late stage of illness. End of life care planning must positively anticipate a robust array of needs and concerns well beyond the dramatic decisions to withhold or withdraw life-prolonging technologies usually found in advance directives. To embrace this broader framework it is critical that primary care physicians as well as disease specialists receive training in fundamental aspects of both geriatric and palliative care. Professionals from both of these disciplines must share expertise with each other, and should collaborate in advocacy efforts to effectuate changes in the clinical, policy and legislative arenas. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>]     

Addressing a Patient's Hope for a Miracle

Ill patients may make decisions to continue aggressive life-prolonging care based on hope for a miraculous recovery, and clinicians can find goals of care discussions with these patients extremely challenging. Thus, palliative care providers may be asked to help in these discussions. The concept of “miracle” can express a multitude of hopes, fears, and religious commitments. Effective, sensitive engagement requires the palliative care provider to attend to these variegated hopes, fears, and commitments. This case presents a typology of ways patients express hope for a miracle along with analysis of the motivations and beliefs underlying such hopes and suggestions for tailored responses by palliative care providers.