Physician-older patient communication at the end of life

Communication with dying patients and their families requires special skills to assist them in this extremely stressful period. This article begins with a case that illustrates many of the challenges of communicating with the dying. It then reviews the literature about communication with older patients at the end of life, focusing on physician-patient discussions, decision-making, advance directives, and cultural factors. The article concludes with a practical discussion of problems that physicians may encounter when working with older patients at the end of life and their families and recommendations to improve communication.     

Quality Improvement in End-of-Life Critical Care

Patients, clinicians and policy makers are increasingly interested in measuring and improving the quality of health care at the end of life. The intensive care unit (ICU) is characterized by high mortality and frequent use of life-sustaining treatments, making critical care a natural target for these efforts. Indeed, multiple local and regional quality improvement efforts now specifically target the dying experience for ICU patients, patients at risk for ICU admission, and their families. These activities either target ICU caregivers through educational programs and quality incentives, or target patients and their families directly through palliative care and efforts to improve decisions around the end of life. Although these initiatives hold great promise, they also face inherent challenges-it is difficult to measure the quality of end-of-life care, we lack practical targets for affecting quality, and uncertain political climates can often preclude serious discussions about end-of-life care. Moreover, these programs may lead to unintended consequences, potentially negatively impacting the very care they seek to improve. Future innovations surrounding how we measure the quality of end-of-life care and paradigm shifts in the way we think about ICU quality may help us to fully realize the goal of improving the dying process for ICU patients.     

End-of-life and other ethical issues related to pacemaker and defibrillator use in the elderly

In the past decade, the rate of implantation of pacemakers and cardioverter-defibrillators in the elderly with cardiac impairment has soared. As patients near the end of life, interventions become more complicated and expensive, and less effective. In this context, "informed consent" requires consideration of issues different from those faced in more routine settings. Informed consent requires full disclosure, patient competence, and free exercise of will-but in practice, few patients or their families are in a position to make fully informed decisions about highly complex treatments at the end of life. Physicians continue to bear the responsibility of advising patients about sophisticated interventions or, alternatively, palliative care. Physician training, with its narrow focus on the treatment of disease with drugs and technology, has not prepared physicians to advise patients on issues arising from the availability of multiple interventions at the end of life. Professional societies can fill a gap by developing programs and materials to help physicians treat their dying patients in a high-technology era.     

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.     

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.     

Measuring quality in end-of-life care

Scrutiny of the quality of medical care near the end of life is increasing. Experts have begun to define and conceptualize quality of care for dying patients and are developing measurement tools to assess quality of care in this population. Definitions and conceptual models of quality of care at the end of life are reviewed. Approaches for measuring the processes and outcomes of end-of-life care are discussed. Approaches for initiating quality assessment of end-of-life care among geriatric patients are suggested.     

Treating depression in terminally ill patients can optimize their physical comfort at the end of life and provide them the opportunity to confront and prepare for death

The dying process is characterized by feelings of sadness and fear. It is normal for patients at the end of life to worry and grieve the loss of their health. However, when these feelings become excessive and interfere with all aspects of the patient's life, they are abnormal responses to the stress of terminal illness. Screening for depression in terminally ill patients can optimize their physical comfort at the end of life and provide them the opportunity to confront and prepare for death.     

Recognising and managing dying patients in the acute hospital setting: can we do better?

Healthcare professionals have limited formal end‐of‐life care training despite the large proportion of hospital deaths. A retrospective review of 201 acute hospital deaths revealed 166 (82.6%) had documentation to suggest the patient was dying but this was performed late with a median time between documentation and death of 0.84 days. Furthermore, 132 (66%) patients received an intervention in the final 48 h of life. This highlights the need to improve the recognition and management of dying patients in acute hospitals.     

Whole-patient assessment, goal planning, and inflection points: their role in achieving quality end-of-life care

This article provides a framework for performing whole-patient assessment and goal planning. These clinical tasks involve a multidisciplinary, multidimensional, patient-centered approach to care and a deep appreciation for the complex interplay between the physical, psychological, social, and spiritual aspects of the human experience of dying. This article stresses the iterative nature of whole-patient assessment and goal planning, both of which should be conducted at certain important junctures in a patient's progression to manage effectively the evolving challenges faced by terminally ill persons and their families. This article also provides suggestions on successfully managing the communication challenges in caring for patients near the end of life and their family.     

A comparative cost analysis of terminal cancer care in home hospice patients and controls

A comparison is made between the expenditure during the last 90 days of life on 98 terminal cancer patients cared for by a home based hospice service and that on matched patients dying without the home hospice service. The control patients were matched for site of primary cancer, age and sex. The individual records of both groups of patients were analyzed and costed. It was found that the costs of providing 24 hour comprehensive medical and nursing care at home to those dying of cancer and support for their families was no more expensive than traditional institutional care.     

Managing Implantable Cardioverter-Defibrillators at End-of-Life: Practical Challenges and Care Considerations

Implantable cardioverter-defibrillators (ICDs) monitor for and terminate malignant arrhythmias. Given their potential as a life-saving therapy, an increasing number of people receive an ICD every year, and a growing number are currently living with ICDs. However, cardiopulmonary arrest serves as the final common pathway of natural death, and the appropriate management of an ICD near the end-of-life is crucial to ensure that a patient's death is not marked by further suffering due to ICD shocks. The tenets of palliative care at the end-of-life include addressing any medical intervention that may preclude dying with dignity; thus, management of ICDs during this phase is necessary. Internists are at the forefront of discussions about end-of-life care, and are likely to find discussions about ICD care at the end-of-life particularly challenging. The present review addresses issues pertaining to ICDs near the end of a patient's life and their potential impact on dying patients and their families. A multidisciplinary, patient-centered approach can ensure that patients receive the maximum benefit from ICDs, without any unintended pain or suffering.     

Talking it out: helping our patients live better while dying

Although dying is an inevitable part of the life cycle, there has been extensive political debate over end-of-life care. Participating in end-of-life care conversations can be emotionally challenging for everyone involved. Messages about serious or terminal illnesses can be very hard for patients and their families to hear, and physicians frequently struggle with the burden of delivering these messages. Still, evidence shows that conversations about end-of-life care options between physicians and patients can improve the quality of life of dying patients and help to relieve the emotional burden on surviving loved ones. Legislation to support these discussions by consistently reimbursing physicians for their time spent performing this service has been blocked on multiple occasions. More research on how to improve end-of-life care will enable health care providers to optimize treatment of their patients. Overcoming political divides to support end-of-life care conversations is needed to promote care that is consistent with patients' values and needs and is a key step in encouraging better quality of life for dying patients.     

Pain, dyspnea, and the quality of dying in long-term care

OBJECTIVES: To evaluate the relationship between pain, dyspnea, and family perceptions of the quality of dying in long-term care.
DESIGN: After-death interviews.
SETTING: Stratified random sample of 111 nursing homes and residential care and assisted living facilities in four states.
PARTICIPANTS: Paired interviews from facility staff and family caregivers for 325 deceased residents.
MEASUREMENTS: The outcome variable was the Quality of Dying in Long-Term Care (QOD-LTC), a psychometrically sound, retrospective scale representing psychosocial aspects of the quality of dying, obtained from interviews with family caregivers. Facility staff reported the presence, frequency, and severity of pain and dyspnea.
RESULTS: During the last month of life, nearly half of residents experienced pain or dyspnea. QOD-LTC scores did not differ for residents with and without pain (4.15 vs 4.02, P =.16). Overall, residents with dyspnea had better QOD-LTC scores than those without dyspnea (4.20 vs 3.99, P =.006). The association between dyspnea and a better QOD-LTC score was strongest in cognitively impaired residents and for those dying in residential care and assisted living facilities.
CONCLUSION: For residents dying in long-term care, pain and dyspnea were not associated with a poorer quality of dying as perceived by families of deceased residents. Instead, dyspnea may alert staff to the need for care. Initiatives to improve the quality of dying in long-term care should focus not only on physical symptoms, but also on the alleviation of nonphysical sources of suffering at the end of life.     

Advance Directives: theoretical concept and practical significance in the USA

The article examines on the basic of empirical data the discrepancy between the theoretical demand and the practical role of advance directives. Often advance directives have no influence on medical decision-making in clinical care of critically ill patients. The vague language of the widely used standard living wills and the lack of physician-patient communication in the process of delivering an advance directives are contributing factors. However, many physicians even disregard patients' preferences in concrete and meaningful living wills at the end of life. Besides the lack of information many even seriously ill patients do not deliver an advance because they misjudge their medical prognosis and life expectancy. Often the communication between patients and doctors are blocked because they expect from the each other the first step to talk about end of life decisions and advance directives. In this context physicians claim lack of time, training in communication skills and their discomfort in talking about death and dying with their patients.     

Factors contributing to dying at home in elderly patients who received home care service]

This study examine whether around-the-clock medical support is a contributing factor to dying at home, and also tried to identify other such factors. Visiting nursing records of 81 elderly patients who died at home or in hospital after receiving home care at two facilities, one with and one without 24-hour medical support respectively were examined retrospectively. The subjects were divided into two groups: those who died at home and those who died in a hospital or nursing home. The two groups were compared in terms of clinical and sociodemographic characteristics and preferences for dying at home, expressed by patients, families and medical staff. Those who died at home showed a significantly higher rate of total dependence (84.6% vs. 48.1%) at month before death. Dying at home was significantly more preferred by all patients, families and medical staff. The major reason for hospitalization was rapid deterioration of the patients' condition. The facility with around-the-clock medical service had a higher rate of dying at home (42% vs. 27%, p = 0.18). Also, patients, families, and medical staff associated with their facility showed a higher preference for dying at home. We concluded from the above that the contributing factors for dying at home are: 1) total dependence level of ADL at one month before the death, and 2) preference for dying at home expressed by the patient, family and medical staff. This study suggests 24-hour medical support should be a requirement for in-home terminal care. Supporting advice from the staff to the family seems to be another contributing factor.     

Family satisfaction in the ICU: differences between families of survivors and nonsurvivors

BACKGROUND: We previously noted that the families of patients dying in the ICU reported higher satisfaction with their ICU experience than the families of survivors. However, the reasons for this finding were unclear. In the current study, we sought to confirm these findings and identify specific aspects of care that were rated more highly by the family members of patients dying in the ICU compared to family members of ICU survivors. METHODS: A total of 539 family members with a patient in the ICU were surveyed. Family satisfaction was measured using the 24-item family satisfaction in the ICU questionnaire. Ordinal logistic regression identified which components of family satisfaction were associated with the patient's outcome (ie, whether the patient lived or died). RESULTS: A total of 51% of respondents had a loved one die in the ICU. Overall, the families of patients dying in the ICU were more satisfied with their ICU experience than were families of ICU survivors, and the largest differences were noted for care aspects directly affecting family members. Significant differences were found for inclusion in decision making, communication, emotional support, respect and compassion shown to family, and consideration of family needs (p<0.01). CONCLUSIONS: The families of patients dying in the ICU were more satisfied with their ICU experience than were the families of ICU survivors. The reasons for this difference were higher ratings on family-centered aspects of care. These findings suggest that efforts to improve the support of ICU family members should focus not only on the families of dying patients but also on the families of patients who survive their ICU stay.     

Strategies for culturally effective end-of-life care

As a result of profound worldwide demographic change, physicians will increasingly care for patients from cultural backgrounds other than their own. Differences in beliefs, values, and traditional health care practices are of particular relevance at the end of life. Health care providers and patients and families may not have shared understandings of the meaning of illness or death and may not agree on the best strategies to plan for the end of life or to alleviate pain and suffering. Good end-of-life care may be complicated by disagreements between physicians and patients, difficult interactions, or decisions the physician does not understand. Challenges may result from cultural differences between the patient's background and traditional medical practice. Values so ingrained in physicians as to be unquestioned may be alien to patients from different backgrounds. Physicians need to be sensitive to cultural differences and to develop the skills necessary to work with patients from diverse backgrounds. Community and cultural ties provide a source of great comfort as patients and families prepare for death. This paper describes two cases that raise issues about cross-cultural end-of-life practice and suggests strategies for negotiating common problems. Physicians should assess the cultural background of each patient and inquire about values that may affect care at the end of life. They should become aware of the specific beliefs and practices of the populations they serve, always remembering to inquire whether an individual patient adheres to these cultural beliefs. Attention to cultural difference enables the physician to provide comprehensive and compassionate palliative care at the end of life.