Dignity,Death, and Dilemmas: A Study of Washington Hospices and Physician-Assisted Death

The legalization of physician-assisted death in states such as Washington and Oregon has presented defining ethical issues for hospice programs because up to 90% of terminally ill patients who use the state-regulated procedure to end their lives are enrolled in hospice care. The authors recently partnered with the Washington State Hospice and Palliative Care Organization to examine the policies developed by individual hospice programs on program and staff participation in the Washington Death with Dignity Act. This article sets a national and local context for the discussion of hospice involvement in physician-assisted death, summarizes the content of hospice policies in Washington State, and presents an analysis of these findings. The study reveals meaningful differences among hospice programs about the integrity and identity of hospice and hospice care, leading to different policies, values, understandings of the medical procedure, and caregiving practices. In particular, the authors found differences 1) in the language used by hospices to refer to the Washington statute that reflect differences among national organizations, 2) the values that hospice programs draw on to support their policies, 3) dilemmas created by requests by patients for hospice staff to be present at a patient's death, and 4) five primary levels of noninvolvement and participation by hospice programs in requests from patients for physician-assisted death. This analysis concludes with a framework of questions for developing a comprehensive hospice policy on involvement in physician-assisted death and to assist national, state, local, and personal reflection.     

Ethical dilemmas in hospice and palliative care

In order to understand some of the ethical dilemmas that face hospice programs in the United States, one must understand the Medicare Hospice Benefit, which is the model by which hospice programs provide palliative care to terminally ill patients in the United States. Unlike palliative care programs outside the United States, patients must have a prognosis of 6 months or less to receive hospice care under the Medicare Hospice Benefit. Care is reimbursed on a per diem basis, and inpatient care is restricted to pain and symptom management that cannot be managed in another setting. Ethical dilemmas that face physicians referring patients to hospice programs include the ability of clinicians to predict accurately a patient prognosis of 6 months or less, and to what extent hospice programs and clinicians are obligated to provide patients with full information about their illness, as the Medicare Hospice Benefit requires that patients sign an informed consent in order to elect the hospice benefit. There are ethical dilemmas that affect day-to-day patient management in palliative care programs including physician concern over the use of morphine because of possible respiratory depression in the advanced cancer patient, the question of providing enteral or parenteral nutritional support to patients who refuse to eat near the end of life, and the question of providing parenteral fluids to patients who are unable to take fluids during the terminal phases of illness. A final ethical dilemma concerns the methodology for quality of life research in palliative care. By following current research dogma, and only considering patient-generated data as valid, the patient population that most needs to be studied is excluded. A new methodology specifically for palliative care research is needed to provide information on the patients who are cognitively or physically impaired and unable to provide input regarding their needs near the end of life.Presented as an invited lecture at the 6th International Symposium: Supportive Care in Cancer, New Orleans, La., USA, 2–5 March 1994     

Hospice program integration: An issue for policymakers

As the number of hospice programs in the United States expands, policymakers face a variety of issues concerning the care of the terminally ill. Do hospice programs offer a truly unique approach in caring for the dying? Are hospice services cost effective? Should hospice programs become integrated into the mainstream of medical care service delivery? Based on data from hospice programs in an industrialized Midwestern state, this paper explores the strategies employed by hospice programs to become integrated, the conflicts that have arisen among providers of hospice care, and the impact of hospice program integration on patient care.

Results show that as hospice programs become more integrated, they have lost some of the idealism on which they were founded, have altered organizational structures, and have changed certain patient services. However, there is no evidence to suggest that integration of hospice programs into the medical mainstream has decreased the quality of patient care or patient satisfaction for hospice services.     

Establishing incidence and administrative protocols for do not resuscitate orders

An order not to resuscitate refers only to CPR and does not imply the omission of any other type of medical care. Institutional DNR policies should include specific statements reflecting resuscitation for those without DNR orders, the patients' wishes, medical conditions, roles of family, protocol describing the process for DNR orders, scope of DNR orders, and frequency of review of DNR orders. The most common reasons for not having written DNR protocols were that directors of nursing did not have guidelines for or did not feel qualified to develop policies, and that they were not sure of the legal implications of such policies. An interagency ethics committee can serve as an advisory committee, but all medical and nursing decisions should be made by the appropriate professional, based on agency policy.     

Developing Do Not Resuscitate policies

It is clear that nurse administrators must take a leadership role in developing a DNR policy. The establishment of written DNR policies are necessary, not only to meet Joint Commission Standards, but also to improve communication, reduce ethical dilemmas, legally clarify patient status, and maintain consistent quality of care. Although a DNR policy cannot address and anticipate all problems, the interdisciplinary process used to develop DNR policies can provide the health care team with a base on which to build the policies, guidelines, and support mechanisms needed to deal with future ethical issues.     

A comparative review of palliative care development in six countries represented by the Middle East Cancer Consortium (MECC)

Palliative care development and services were reviewed in the region represented by the six members of the Middle East Cancer Consortium: Cyprus, Egypt, Israel, Jordan, the Palestinian Authority, and Turkey. The multimethod review synthesized evidence from ethnographic field visits to inpatient units, home care hospice teams and free-standing hospices, including interviews with hospice and palliative care clinicians, administrators, volunteers, policy makers and academic researchers. Public health data and relevant literature were collated together with internet-accessed information on services and health care systems. A total of 69 services were located; two country members have a history of relatively sustained development of hospice and palliative care, but provision across the Middle East Cancer Consortium region is highly variable at a local level. Considerable barriers to service development were identified in a region already struggling with many military and political conflicts. Key problems are a lack of secure funds and government support, inadequate professional training programs, opioid phobia in professionals and the public, and a lack of awareness and understanding of palliative care needs at public, government, and professional levels. Key areas for further attention were increasing national and international professional training and public education programs, improving opioid legislation and health care policies, negotiating for secure government or health insurance funding provision, raising awareness about the need for pediatric services and for patients with other illnesses, as well as for those with cancer, and working to integrate palliative care into mainstream health service provision and education.     

Potential medicare reimbursements for services to patients with chronic fatal illnesses

Medicare's payment and coverage patterns most readily serve beneficiaries' needs for episodic interventions such as surgery and diagnostic tests. Except in hospice, supportive services for long-term, worsening illnesses have not been central to financial policies. Thus, providers who aim for comprehensive, high-quality programs for patients facing serious and eventually fatal illness must work within complex reimbursement structures that do not fit patients' needs well. In acute settings, long-term care settings, home health, physicians' visits and hospice, the rules for Medicare reimbursements differ and are rapidly changing. Consequently, many providers do not know how to bill for appropriate care for a person who is very sick and expected to die. Many health-care provider organizations want to enhance services to seriously ill patients and their families by initiating organized palliative care programs. Often, organization leaders are unfamiliar with regulatory and reimbursement issues for palliative care, especially as patients cross programs. This article provides an overview of the reimbursement approaches for Medicare payments. This information gives a foundation for estimating a business plan, for discussions with fiscal intermediaries and with other area provider organizations, and for making financially viable strategic improvements in care for seriously ill patients.     

Discussion of the do-not-resuscitate order: a pilot study of perceptions of patients with refractory cancer

Do not resuscitate (DNR) discussions are difficult for physicians and patients alike, resulting in DNR orders being written shortly before death. To understand the patients' point of view, interviews about the perception of DNR discussions were conducted as a pilot study. Fourteen patients with refractory cancer were asked to rank the favorability of DNR discussion scenarios on a Likert scale with 1 meaning most unfavorable and 7 meaning most favorable. The most favorable scenarios were assurance that pain will be controlled (6.9); assurance of nonabandonment (6.9); information about hospice care (6.6); and DNR discussion conducted by attending physician (6.6). The least favorably rated scenarios were delivery of recommendation by physician with whom patient had had no prior contact (1.8); presence of unknown medical personnel with physician (2.0); refusal of physician to answer questions (2.1); and agreement between physician and patient to discuss only positive aspects of patient's case (2.1). This study supports the importance to the patient of a supportive relationship with the attending physician who is both attuned to the need for comprehensive palliative care and is honest about the prognosis.     

DNR or CPR--the choice is ours.

OBJECTIVE: To assess changes in the terminal care of critically ill patients before and after the institution of do-not-resuscitate (DNR) order policies, and policies on the care of the hopelessly ill. DESIGN: Retrospective chart review that comprises the following groups: 82 consecutive deaths from 1981 to 1982, representing our older practice pattern of frequent utilization of terminal resuscitative efforts (group A); 37 consecutive deaths between June and December 1987, the 6-month period immediately preceding the adoption of the DNR policy (group B); and 61 consecutive deaths in calendar year 1988 after the DNR policy went into effect (group C). SETTING: Surgical ICU of a large tertiary care center. PATIENTS: Consecutive patients who died during the study periods before and after the implementation of a DNR policy. INTERVENTIONS: The implementation of hospital-wide policies on DNR orders and care of the hopelessly ill patient. MEASUREMENTS AND MAIN RESULTS: There were no significant differences between the three groups for age, Acute Physiology and Chronic Health Evaluation II scores, Mortality Risk Ratio scores, or lengths of ICU stay. There was a significant (p less than .0001) decrease in the frequency of terminal resuscitative efforts, as evidenced by a decrease from 52% in group A to 3% in group C. The preterminal identification and acceptance of imminent death increased over the study period with an increase (p less than .0001) in the application of DNR orders from 46% in group A to 98% in group C. The ability to withdraw support increased (p less than .0001) from 23% in group A to 73% in group C. CONCLUSIONS: We believe that our data exemplify how our ICU has been able to identify hopelessly ill patients, and how it has implemented specific levels of care that take into account not only medical prognostication, but also the wishes of the patients and their families, while maintaining an atmosphere of comfort and dignity. We demonstrated an important change in the philosophy of care for hopelessly ill patients, which was associated with the institution of DNR policies.     

Prison hospice and pastoral care services in California

Hospice at the California Medical Facility (CMF) Vacaville dates back to the mid-1980s, when the acquired immune deficiency syndrome (AIDS) epidemic began to be felt throughout California's Department of Corrections. Vacaville has served for decades as the principal location for delivering health services to California's incarcerated men. Informal hospice-like services were inspired by Elisabeth Kubler-Ross and through inmate and community calls for more humane care for dying inmates. By 1990, efforts to formally establish a hospice were under way. In 1996, a 17-bed, state-licensed hospice began caring for dying inmates. An interdisciplinary team plans and delivers the care, meeting weekly to admit and review patients. The Pastoral Care Services (PCS) inmate volunteer program, with more than 50 trained participants, provides care and comfort to dying patients in hospice and to ill patients on the general medicine service. PCS volunteers perform many duties, including sitting vigil with actively dying inmates. Inmates enrolling in hospice have to forgo further curative therapy, consent to the program in writing, and have a 6-month or less survival prognosis; patients are not required to have a do-not-resuscitate (DNR) order, but are encouraged to consider one. Training for physicians, staff and PCS volunteers is provided by the University of California, Davis faculty of the West Coast Center for Palliative Education. Bereavement services are provided for PCS volunteers, other inmate "family" and staff. Family and friends of the deceased in the free community are followed by phone, mail, and primarily through referral to resources in their local area.     

Timing of referral to hospice and quality of care: length of stay and bereaved family members' perceptions of the timing of hospice referral

Previous research has noted that many persons are referred to hospice in the last days of life. The National Hospice and Palliative Care Organization collaborated with Brown Medical School to create the Family Evaluation of Hospice Care (FEHC) data repository. In 2005, 106,514 surveys from 631 hospices were submitted with complete data on the hospice length of stay and bereaved family member perceptions of the timing of hospice care. Of these surveys, 11.4% of family members believed that they were referred "too late" to hospice. This varied from 0 to 28.1% among the participating hospice programs with 30 or more surveys. Among those with hospice lengths of stay of less than a month, only 16.2% reported they were referred "too late." Although the bereaved family member perceptions of the quality of end-of-life care did not vary by length of stay for each of the FEHC domains, the perception of being referred "too late" was associated with more unmet needs, higher reported concerns, and lower satisfaction. Our results suggest that family members' perception of the timing of hospice referral-not the length of stay-is associated with the quality of hospice care. This perception varies substantially among the participating hospice programs. Future research is needed to understand this variation and how hospice programs are delivering high quality of care despite short length of stay.     

Survey of palliative care programs in United States teaching hospitals

In order to estimate the prevalence of palliative care programs in academic hospitals in the United States, we surveyed a random sample of 100 hospitals in the Council of Teaching Hospitals and Health Systems directory. Sixty percent of hospitals provided information. At least 26% of hospitals had either a palliative care consultation service or inpatient unit and 7% had both. Eighteen percent of hospitals had a palliative care consultation service alone, 19% had an inpatient palliative care unit, 22% reported a hospice affiliation, and 17% had a hospice inpatient contract. Additionally, at least 20% of the remaining hospitals were planning a palliative care program. The consultation services had an average daily census of 6; the inpatient units had an average of 12 beds. Palliative care consultation programs were largely affiliated with departments of medicine or hematology/oncology, and were typically staffed by a physician and a nurse. Only half had a dedicated social worker, one third had a chaplain, one third had a pharmacist, and a few included a bereavement coordinator or volunteer director, suggesting that the hospice model of interdisciplinary care is not being adopted regularly in palliative care programs. In comparison, almost half of hospitals noted established pain services. In conclusion, palliative care programs, although found in a minority of surveyed hospitals, are becoming an established feature of academic medical centers in the United States. More detailed information is needed about the type and quality of care they provide.     

Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses

Context

Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs.

Do-not-resuscitate order: a view throughout the world

Resuscitation has the ability to reverse premature death. It can also prolong terminal illness, increase discomfort, and consume resources. The do-not-resuscitate (DNR) order and advance directives are still a debated issue in critical care. This review will focus on several aspects, regarding withholding and/or withdrawing therapies and advance directives in different continents. It is widely known that there is a great diversity of cultural and religious beliefs in society, and therefore, some critical ethical and legal issues have still to be solved. To achieve a consensus, we believe in the priority of continuing education and training programs for health care professionals. It is our opinion that a serious reflection on ethical values and principles would be useful to understand the definition of medical professionalism to make it possible to undertake the best way to avoid futile and aggressive care. There is evidence of the lack of DNR order policy worldwide. Therefore, it appears clear that there is a need for standardization. To improve the attitude about the DNR order, it is necessary to achieve several goals such as: increased communication, consensus on law, increased trust among patients and health care systems, and improved standards and quality of care to respect the patient's will and the family's role.     

Palliative care and hospice programs

Palliative care and hospice programs are points on the continuum of comprehensive patient care. Unfortunately, provision of care for terminally ill patients is suboptimal. There are many new approaches to improving the skills of all physicians to fulfill the needs of patients, including better education for house staff, "train-the-trainers" programs for physicians in practice, research into methods of symptom control, and better access to established hospice programs. This review covers the history, current status, and practical suggestions for improving palliative care and hospice programs in primary care settings.     

Emergency Medical Services Provider Experiences of Hospice Care

Background: Growing numbers of emergency medical services (EMS) providers respond to patients who receive hospice care. The objective of this investigation was to assess the knowledge, attitudes, and experiences of EMS providers in the care of patients enrolled in hospice care. Methods: We conducted a survey study of EMS providers regarding hospice care. We collected quantitative and qualitative data on EMS provider's knowledge, attitudes, and experiences in responding to the care needs of patients in hospice care. We used Chi-squared tests to compare EMS provider's responses by credential (Emergency Medical Technician [EMT] vs. Paramedic) and years of experience (0–5 vs. 5+). We conducted a thematic analysis to examine open-ended responses to qualitative questions. Results: Of the 182 EMS providers who completed the survey (100% response rate), 84.1% had cared for a hospice patient one or more times. Respondents included 86 (47.3%) EMTs with Intermediate and Advanced training and 96 (52.7%) Paramedics. Respondent's years of experience ranged from 0–10+ years, with 99 (54.3%) providers having 0–5 years of experience and 83 (45.7%) providers having 5+ years of experience. There were no significant differences between EMTs and Paramedics in their knowledge of the care of these patients, nor were there significant differences (p < 0.05) between those with 0–5 and 5+ years of experience. Furthermore, 53 (29.1%) EMS providers reported receiving formal education on the care of hospice patients. A total of 36% respondents felt that patients in hospice care required a DNR order. In EMS providers' open-ended responses on challenges in responding to the care needs of hospice patients, common themes were family-related challenges, and the need for more education. Conclusion: While the majority of EMS providers have responded to patients enrolled in hospice care, few providers received formal training on how to care for this population. EMS providers have expressed a need for a formal curriculum on the care of the patient receiving hospice.     

When CPR is not an option

What is to be learned from this situation? First, although Mr. Lockwood's consent for the DNR order is not needed, there is an obligation to communicate openly and clearly with the family and ensure that Mrs. Lockwood's advance directive is respected. This might mean a DNR order needs to be written. Also, there is an obligation to discuss goals of care with the family. The second lesson is that you should reflect on your employer's CPR policies and practice, and ask the following questions: Do the policy and/or practices support saying "no" in a situation such as Mrs. Lockwood's? Also, how does the policy support staff when there is a request for futile CPR, either from a competent patient or from a patient's family? What are the expectations about communication with the family when there is an advance directive and/or when CPR is found to be futile? Knowing what you ought to do for patients is not sufficient. Often you cannot act on these decisions because of the environment. If the policies are not in accord with the CNA Statement on Resuscitative Interventions, you should collaborate with colleagues to revise the CPR policy and practices. By doing so, you will be meeting your obligation to help foster and support a practice environment that promotes ethical, competent and compassionate nursing care.     

The Maryland Division of Correction hospice program

The Maryland Division of Correction houses 24,000 inmates in 27 geographically disparate facilities. The inmate population increasingly includes a frail, elderly component, as well as many inmates with chronic or progressive diseases. The Division houses about 900 human immunodeficiency virus (HIV)-positive detainees, almost one quarter with an acquired immune deficiency syndrome (AIDS) diagnosis. A Ryan White Special Project of National Significance (SPNS) grant and the interest of a community hospice helped transform prison hospice from idea to reality. One site is operational and a second site is due to open in the future. Both facilities serve only male inmates, who comprise more than 95% of Maryland's incarcerated. "Medical parole" is still the preferred course for terminally ill inmates; a number have been sent to various local community inpatient hospices or released to the care of their families. There will always be some who cannot be medically paroled, for whom hospice is appropriate. Maryland's prison hospice program requires a prognosis of 6 months or less to live, a do-not-resuscitate (DNR) order and patient consent. At times, the latter two of these have been problematic. Maintaining the best balance between security requirements and hospice services to dying inmates takes continual communication, coordination and cooperation. Significant complications in some areas remain: visitation to dying inmates by family and fellow prisoners; meeting special dietary requirements; what role, if any, will be played by inmate volunteers. Hospice in Maryland's Division of Correction is a work in progress.