Barriers to communication about end-of-life care in AIDS patients

Objective

Patients and physicians do not adequately discuss patients’ preferences for medical care at the end of life. Our objective was to perform a qualitative study using focus groups to identify barriers and facilitators to communication about end-of-life medical care for patients with AIDS and their physicians.

Participants

Patients with AIDS and physicians with moderate or extensive HIV experience were recruited from clinics and community-based settings using network sampling. A total of 47 patients participated in six focus groups and 19 physicians participated in three groups.

Measurements and main results

Patients or physicians identified 29 barriers and facilitators to communication about end-of-life care. Many patients and physicians expressed discomfort talking about death and dying, and some felt that discussing end-of-life care could cause harm or even hasten death. Several patients expressed the view that a living will obviated the need for discussion with their physician. Previous experience of discrimination from the health care system was a strong barrier to end-of-life communication for some patients with AIDS. Some patients hesitate to bring up end-of-life issues because they want to protect their physicians from uncomfortable discussions. Many patients identified the quality of communication as an important facilitator to these difficult discussions.

Conclusions

Improving the quality of patient-physician communication about end-of-life care will require that physicians identify and overcome the barriers to this communication. To improve the quality of medical care at the end of life, we must address the quality of communication about end-of-life care.     

Caring for patients at the end of life: reflections after 12 years of practice

Physicians have the privilege and authority to assist patients and their families at the end of life. Regardless of diagnosis, commonalities occur in the dying process, and palliative care benefits patients and families. This perspective chronicles my experience over 12 years caring for 95 patients at the end of life, illustrated in part with six vignettes. I describe interactions with families, discuss logistic issues around dying, examine the do-not-resuscitate issue, and highlight experiences with home visits. I also touch on how I communicate with the family after a death. I hope to express the significance of what I have learned while assisting patients and families at this critical juncture.     

Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death

BACKGROUND: Efforts to improve communication between physicians and dying patients have been unsuccessful, and guidelines for improving patient-physician communication about end-of-life care are based primarily on expert opinion. This study assessed which aspects of communication between patients and physicians are important in end-of-life care. METHODS: Twenty focus groups were held with 137 individuals, including patients with chronic and terminal illnesses, family members, health care professionals from hospice or acute care settings, and physicians with expertise in end-of-life care. Focus group analyses determined domains of physician skill at end-of-life care. Communication with patients was identified as one of the most important domains. Analyses of components important in communicating with dying patients and their families were performed. RESULTS: The following 6 areas were of central importance in communicating with dying patients: talking with patients in an honest and straightforward way, being willing to talk about dying, giving bad news in a sensitive way, listening to patients, encouraging questions from patients, and being sensitive to when patients are ready to talk about death. Within these components, subthemes emerged that provide guidelines for physicians and educators. Dying patients also identified the need to achieve a balance between being honest and straightforward and not discouraging hope. CONCLUSIONS: Several areas emerged for physicians to focus their attention on when communicating with dying patients. These findings provide guidance in how to improve this communication. They also highlight the need to approach communication about end-of-life care as a spectrum that requires attention from the time of a terminal diagnosis through death.     

Community physicians who provide terminal care.

BACKGROUND: Most dying patients are treated by physicians in community practice, yet studies of terminal care rarely include these physicians. OBJECTIVE: To examine the frequency of life-sustaining treatment use and describe what factors influence physicians' treatment decisions in community-based practices. METHODS: Family members and treating physicians for decedents 65 years and older who died of cancer, congestive heart failure, chronic lung disease, cirrhosis, or stroke completed interviews about end-of-life care in community settings. RESULTS: Eighty percent of eligible family and 68.8% of eligible physicians participated (N = 165). Most physicians were trained in primary care and 85.4% were primary care physicians for the decedents. Physicians typically knew the decedent a year or more (68.9%), and 93.3% treated them for at least 1 month before death. In their last month of life, 2.4% of decedents received cardiopulmonary resuscitation, 5.5% received ventilatory support, and 34.1% received hospice care. Family recalled a discussion of treatment options in 78.2% of deaths. Most discussions (72.1%) took place a month or more before death. Place of death, cancer, and having a living will were independent predictors of less aggressive treatment before death. Physicians believed that advanced planning and good relationships were the major determinants of good decision making. CONCLUSIONS: Community physicians use few life-sustaining treatments for dying patients. Treatment decisions are made in the context of long-term primary care relationships, and living wills influence treatment decisions. The choice to remain in community settings with a familiar physician may influence the dying experience.     

Mind the gap: Opportunities for improving end-of-life care for patients with advanced heart failure

BACKGROUND:

Patients with advanced heart failure (HF) experience progressive symptoms, decreased quality of life, and more frequent hospitalizations as they approach the end of life (EOL). Understanding patient perspectives and preferences regarding EOL issues is necessary to identify key opportunities for improving care.

OBJECTIVE:

To identify, from the patient’s perspective, the major opportunities for improving EOL care for patients hospitalized because of advanced HF.

METHODS:

A cross-sectional survey of patient perspectives regarding EOL care was administered via interview of 106 hospitalized patients who had advanced HF in five tertiary care centres across Canada. The study compared which aspects of EOL care patients rated as ‘extremely important’ and their level of satisfaction with these aspects of EOL care to identify key opportunities for improvement of care.

RESULTS:

The greatest opportunities for improvement in EOL care were reducing the emotional and physical burden on family, having an adequate plan of care following discharge, effective symptom relief and opportunities for honest communication. The three most important issues ranked by patients were avoidance of life support if there was no hope for a meaningful recovery, communication of information by the doctor and avoidance of burden for the family.

CONCLUSIONS:

Advanced care planning that seamlessly bridges hospital and home must be standard care for patients who have advanced HF. Components must include coordination of care, caregiver support, comprehensive symptom management, and effective communication regarding HF and EOL issues.     

The quality of dying and death

During the past decade, research has examined definitions and conceptualizations of quality of dying and death in different populations. At the same time, there has been a call to clarify the distinctions between quality of dying and death and other end-of-life constructs. The purposes of this article are to (1) review research that examined definitions and conceptualizations of the quality of dying and death, (2) clarify the quality of dying and death construct and its distinction from quality of life and quality of care at the end of life, and (3) outline challenges that remain for health care professionals, researchers, and policy makers. Review of the literature revealed that the quality of dying and death construct is multidimensional, with 7 broad domains: physical experience, psychological experience, social experience, spiritual or existential experience, the nature of health care, life closure and death preparation, and the circumstances of death. The quality of dying and death is subjectively determined with numerous factors that influence its judgment, including culture, type and stage of disease, and social and professional role in the dying experience. Quality of dying and death is broader in scope than either quality of life at the end of life or quality of care at the end of life, although there is overlap among these constructs.     

Dying well after discontinuing the life-support treatment of dialysis

BACKGROUND: Cessation of life-prolonging treatments precedes death in an increasing number of cases, but little attention has been accorded to the quality of dying. OBJECTIVE: To examine the quality of dying following dialysis termination. PATIENTS AND METHODS: A prospective cohort, observational study involved 6 dialysis clinics in the United States and 2 clinics in Canada, and 131 adult patients receiving maintenance dialysis who died after treatment cessation. Sixty percent (n = 79) underwent patient (n = 23) and/or family (n = 76) interviews and follow-up with caretakers. A quality of dying tool quantified duration, pain and suffering, and psychosocial factors. RESULTS: The sample was 59% female, the age was 70.0+/-1.2 years old, the duration of dialysis was 34.0+/-2.8 months, and death occurred 8.2+/-0.7 days after the last dialysis treatment. (Data are given as mean +/- SE.) Thirty-eight percent of the subjects who completed the protocol were judged to have had very good deaths, 47% had good deaths, and 15% had bad deaths. During the last day of life, 81% of the sample did not suffer, although 42% had some pain and an additional 5% had severe pain. According to the psychosocial domain of the quality of dying measure, patients who died at home or with hospice care had better deaths than those who died in a hospital or nursing home. CONCLUSIONS: Most deaths following withdrawal of dialysis were good or very good. The influence of site of death and physician attitudes about decisions to stop life support deserves more research attention. Quality of dying tools can be used to establish benchmarks for the provision of terminal care.     

Dying in the ICU: perspectives of family members

OBJECTIVE: To describe the perspectives of family members to the care provided to critically ill patients who died in the ICU. DESIGN: Multicenter, prospective, observational study. SETTING: Six university-affiliated ICUs across Canada. METHODS: Patients who received mechanical ventilation for > 48 h and who died in the ICU were eligible for this study. Three to four weeks after the patient's death, we mailed a validated questionnaire to one selected family member who made at least one visit to the patient in the ICU. We obtained self-rated levels of satisfaction with key aspects of end-of-life care, communication, and decision making, and the overall ICU experience. Main results: Questionnaires were mailed to 413 family members; 256 completed surveys were returned (response rate, 62.0%). In the final hours before the death of the patient, family members reported that patients were "totally comfortable" (34.8%), "very comfortable" (23.8%), or "mostly comfortable" (32.0%). Family members felt "very supported" (57.0%) and "supported" (30.7%) by the health-care team. Most (82.0%) believed that the patient's life was neither prolonged nor shortened unnecessarily. Most family members (90.4%) preferred some form of shared decision making. Overall, 52% of families rated their satisfaction with care as "excellent," 31% rated care as "very good," 10% as "good," 4% as "fair," and 2% as "poor." Overall satisfaction with end-of-life care was significantly associated with completeness of information received by the family member, respect and compassion shown to patient and family member, and satisfaction with amount or level of health care received. CONCLUSIONS: The majority of families of patients who died in participating ICUs were satisfied with the end-of-life care provided. Adequate communication, good decision making, and respect and compassion shown to both the dying patient and their family are key determinants to family satisfaction.     

Hospice care for patients with advanced lung disease.

Hospices are organized programs of support services for patients in the advanced stages of a terminal illness and their families. Although hospices serve dying patients regardless of diagnosis, limited available evidence suggests that these programs are relatively underutilized by patients dying of nonmalignant lung diseases. One explanation may be a lower awareness of hospice eligibility criteria and services among pulmonologists than oncologists. The unpredictability of death from advanced lung disease is another likely reason. Certain limitations on federal and private insurance coverage for patients with advanced lung disease probably contribute as well. For those patients who do enroll, hospice offers expert palliation of physical, psychological, social, and spiritual distress, as well as practical support for home care needs, hospitalization for short-term control of symptoms, and inpatient respite care for relief of home caregivers. Hospice workers view dying as an active phase of life filled with the pursuit of goals that patients and family members wish to complete before or shortly after the end of life. This article reviews hospice care in the United States with particular attention to eligibility criteria and services available for patients who are dying of an advanced lung disease. Specific recommendations are offered for referring respiratory disease patients to hospice programs.     

Costs of terminal care for people with AIDS

Despite the numerous studies on the costs of AIDS, little has been reported on the economic costs for terminal care. This study reports on the average monthly costs of care used in the last 6 months of life by a group of people with AIDS between 1984 and 1990. Hospital and outpatient visits, laboratory results, and medications were evaluated for all subjects. Standard costs (1990 dollars) were applied to all services. The 81 subjects received care in a large private medical practice located in northern California. The group was primarily male (98 percent), white (87 percent), and gay or bisexual (89 percent). Mean age at diagnosis of AIDS was 40.8 (SE = 1.1). Patients averaged a total of 2.9 (SE = 0.2) opportunistic infections (OIs) from the diagnosis of AIDS to death. Median survival was 13.2 months. The primary outcome measures were the components of the costs of terminal care: inpatient visits and outpatient costs. Covariates include location of death, year of death, and OIs. Average monthly terminal care resources included 8.3 days of in-hospital care, $8258 in costs for inpatients care, $840 in outpatient costs, and $9098 in total costs. Death at home increased in frequency (from 20 percent for 1984-1987 to 37 percent for 1987-1990). However, costs in the last 6 months of life did not change significantly as costs for patients who died in the hospital decreased and costs for patients who died at home increased over time. Policies that promote dying at home, while likely to affect patient quality of life, may not lower health care costs.     

Patients' perspectives on physician skill in end-of-life care: differences between patients with COPD,cancer, and AIDS

OBJECTIVES: Patients' views of physician skill in providing end-of-life care may vary across different diseases, and understanding these differences will help physicians improve the quality of care they provide for patients at the end of life. The objective of this study was to examine the perspectives of patients with COPD, cancer, or AIDS regarding important aspects of physician skill in providing end-of-life care. DESIGN: Qualitative study using focus groups and content analysis based on grounded theory. SETTING: Outpatients from multiple medical settings in Seattle, WA. PATIENTS: Eleven focus groups of 79 patients with three diseases: COPD (n = 24), AIDS (n = 36), or cancer (n = 19). RESULTS: We identified, from the perspectives of patients, the important physician skills for high-quality end-of-life care. Remarkable similarities were found in the perspectives of patients with COPD, AIDS, and cancer, including the importance of emotional support, communication, and accessibility and continuity. However, each disease group identified a unique theme that was qualitatively more important to that group. For patients with COPD, the domain concerning physicians' ability to provide patient education stood out as qualitatively and quantitatively more important. Patients with COPD desired patient education in five content areas: diagnosis and disease process, treatment, prognosis, what dying might be like, and advance care planning. For patients with AIDS, the unique theme was pain control; for patients with cancer, the unique theme was maintaining hope despite a terminal diagnosis. CONCLUSIONS: Patients with COPD, AIDS, and cancer demonstrated many similarities in their perspectives on important areas of physician skill in providing end-of-life care, but patients with each disease identified a specific area of end-of-life care that was uniquely important to them. Physicians and educators should target patients with COPD for efforts to improve patient education about their disease and about end-of-life care, especially in the areas defined above. Physicians caring for patients with advanced AIDS should discuss pain control at the end of life, and physicians caring for patients with cancer should be aware of many patients' desires to maintain hope. Physician understanding of these differences will provide insights that allow improvement in the quality of care.     

Hospice: a place for healing and dying well

Caregivers of people with end-stage AIDS face difficult challenges in working with the young, disabled, and dying as they try to help these individuals learn to live and die well. A hospice, a place where people come to die, is based on the philosophy that death can be experienced as a meaningful stage of life. The role of the hospice counselor is to assist dying clients in moving toward inner peace and self-possession, the ultimate goal of dying well. Counselors and caregivers of people with AIDS find their clients dealing with denial, anger, and depression. In the residential hospice setting, staff daily face the need to respond to these issues and the dynamic nature of HIV disease in a community made up of residents, families, partners, volunteers, and other staff. The goal of a hospice is to establish an environment that allows growth, communication, and achievement, despite physical and emotional decline. Hospice care enables individuals to experience the full spectrum of life with all of its emotions while facing the reality of death.     

Decisions to hospitalize nursing home residents dying with advanced dementia

OBJECTIVES: To describe the prevalence of, timing of, and factors associated with decisions not to hospitalize nursing home residents with advanced dementia who were dying. DESIGN: Retrospective cohort study. SETTING: Six hundred seventy five-bed nursing facility in Boston. PARTICIPANTS: Two hundred forty residents in a teaching nursing home who died between January 2001 and December 2003 with advanced dementia. MEASUREMENTS: The prevalence and timing of do-not-hospitalize (DNH) orders were determined from the medical record. Data describing demographic characteristics, health conditions, advance care planning, sentinel events, and health services usage during the last 6 months of life were examined. Factors associated with having a DNH order were identified. RESULTS: At the time of death, 83.8% of subjects had a DNH order. The prevalence of DNH orders was 50.0% and 34.4%, 30 and 180 days before death, respectively. Hospital transfers were common during the last 6 months of life (24.6%). Factors independently associated with having a DNH order before death included surrogate decision-maker was not the subject's child (adjusted odds ratio (AOR)=4.39, 95% confidence interval (CI)=1.52-12.66), eating problems (AOR=4.17, 95% CI=1.52-11.47), aged 92 and older (AOR=2.78, 95% CI=1.29-5.96), and length of stay 2 years or longer (AOR=2.34, 95% CI=1.11-4.93). CONCLUSION: For most institutionalized persons with advanced dementia, a decision to forgo hospitalization is not made until death is imminent. Thus, hospital transfers are common near the end of life. The finding that DNH orders are associated with patient and surrogate factors can help clinicians identify cases in which decisions to forgo hospitalizations may be facilitated.     

New Dimensions in Palliative Care Cardiology

The landscape of patient care at the beginning of the 19th century was dramatically different than it is today. With few good treatment options, illness courses were generally brief. Near the end of life, patients were attended to by spiritual advisors, not health care professionals. Death typically occurred at home, surrounded by friends and family. Moving to the present time, decades of medical advances have significantly improved life expectancy. Cardiology has particularly benefited from many of these advances. Cardiac patients are initiated on optimal medication regimens. As disease burdens progress, interventions such as implantable defibrillators and cardiac resynchronization pacing systems become options for many patients. With further clinical deterioration, select patients might be candidates for ventricular assist devices and heart transplants. These advances have unquestionably improved the prognosis with advanced cardiovascular illnesses. However, they have also changed patient and family attitudes about death and dying, to the point where we have effectively “medicalized our mortality.” The importance of introducing palliative care to the cardiac patient population is now well recognized, with the major cardiovascular societies incorporating palliative care principles into their guideline and consensus statement documents. However, despite this recognition, few cardiac patients get access to palliative care and other resources such as hospice. In this article the existing literature on this topic is reviewed and opportunities for developing and fostering a more collaborative relationship between the disciplines of cardiology and palliative care are discussed.     

Dying with advanced dementia in the nursing home

BACKGROUND: Nursing homes are important providers of end-of-life care to persons with advanced dementia. METHODS: We used data from the Minimum Data Set (June 1, 1994, to December 31, 1997) to identify persons 65 years and older who died with advanced dementia (n = 1609) and terminal cancer (n = 883) within 1 year of admission to any New York State nursing home. Variables from the Minimum Data Set assessment completed within 120 days of death were used to describe and compare the end-of-life experiences of these 2 groups. RESULTS: At nursing home admission, only 1.1% of residents with advanced dementia were perceived to have a life expectancy of less than 6 months; however, 71.0% died within that period. Before death, 55.1% of demented residents had a do-not-resuscitate order, and 1.4% had a do-not-hospitalize order. Nonpalliative interventions were common among residents dying with advanced dementia: tube feeding, 25.0%; laboratory tests, 49.2%; restraints, 11.2%; and intravenous therapy, 10.1%. Residents with dementia were less likely than those with cancer to have directives limiting care but were more likely to experience burdensome interventions: do-not-resuscitate order (adjusted odds ratio [OR], 0.12; 95% confidence interval [CI], 0.09-0.16), do-not-hospitalize order (adjusted OR, 0.33; 95% CI, 0.16-0.66), tube feeding (adjusted OR, 2.21; 95% CI, 1.51-3.23), laboratory tests (adjusted OR, 2.53; 95% CI, 2.01-3.18), and restraints (adjusted OR, 1.79; 95% CI, 1.23-2.61). Distressing conditions common in advanced dementia included pressure ulcers (14.7%), constipation (13.7%), pain (11.5%), and shortness of breath (8.2%). CONCLUSIONS: Nursing home residents dying with advanced dementia are not perceived as having a terminal condition, and most do not receive optimal palliative care. Management and educational strategies are needed to improve end-of-life care in advanced dementia.     

Death and the elderly patient

More attention should be paid to the profound needs of dying patients. The family physician can guide the family members and others in forming a team to help dying elderly patients in this life crisis, so that they may have a "good death." The importance of honesty and cooperation by all those involved is emphasized, as is the need to support the patient emotionally and spiritually.