Factors Affecting Family Satisfaction with Inpatient End-of-Life Care

Background

Little data exists addressing satisfaction with end-of-life care among hospitalized patients, as they and their family members are systematically excluded from routine satisfaction surveys. It is imperative that we closely examine patient and institution factors associated with quality end-of-life care and determine high-priority target areas for quality improvement.

Methods

Between September 1, 2010 and January 1, 2012 the Canadian Health care Evaluation Project (CANHELP) Bereavement Questionnaire was mailed to the next-of-kin of recently deceased inpatients to seek factors associated with satisfaction with end-of-life care. The primary outcome was the global rating of satisfaction. Secondary outcomes included rates of actual versus preferred location of death, associations between demographic factors and global satisfaction, and identification of targets for quality improvement.

Results

Response rate was 33% among 275 valid addresses. Overall, 67.4% of respondents were very or completely satisfied with the overall quality of care their relative received. However, 71.4% of respondents who thought their relative did not die in their preferred location favoured an out-of-hospital location of death. A common location of death was the intensive care unit (45.7%); however, this was not the preferred location of death for 47.6% of such patients. Multivariate Poisson regression analysis showed respondents who believed their relative died in their preferred location were 1.7 times more likely to be satisfied with the end-of-life care that was provided (p = 0.001). Items identified as high-priority targets for improvement included: relationships with, and characteristics of health care professionals; illness management; communication; and end-of-life decision-making.

Interpretation

Nearly three-quarters of recently deceased inpatients would have preferred an out-of-hospital death. Intensive care units were a common, but not preferred, location of in-hospital deaths. Family satisfaction with end-of-life care was strongly associated with their relative dying in their preferred location. Improved communication regarding end-of-life care preferences should be a high-priority quality improvement target.     

End of Life Care for Patients Dying of Stroke: A Comparative Registry Study of Stroke and Cancer

Background

Although stroke is a significant public health challenge and the need for palliative care has been emphasized for these patients, there is limited data on end-of-life care for patients dying from stroke.

Objective

To study the end-of-life care during the last week of life for patients who had died of stroke in terms of registered symptom, symptom management, and communication, in comparison with patients who had died of cancer.

Design

This study is a retrospective, comparative registry study.

Methods

A retrospective comparative registry study was performed using data from a Swedish national quality register for end-of-life care based on WHO`s definition of Palliative care. Data from 1626 patients who had died of stroke were compared with data from 1626 patients who had died of cancer. Binary logistic analyses were used to calculate odds ratios, with 95% CI.

Results

Compared to patients who was dying of cancer, the patients who was dying of stroke had a significantly higher prevalence of having death rattles registered, but a significantly lower prevalence of, nausea, confusion, dyspnea, anxiety, and pain. In addition, the stroke group had significantly lower odds ratios for health care staff not to know whether all these six symptoms were present or not. Patients who was dying of stroke had significantly lower odds ratio of having informative communication from a physician about the transition to end-of-life care and of their family members being offered bereavement follow-up.

Conclusions

The results indicate on differences in end-of-life care between patients dying of stroke and those dying from cancer. To improve the end-of-life care in clinical practice and ensure it has consistent quality, irrespective of diagnosis, education and implementation of palliative care principles are necessary.     

Levels of Intervention: How Are They Used in Quebec Hospitals?

In order to promote better practices and communication around end-of-life decision-making, several Canadian hospitals in the province of Quebec have developed a tool called “Levels of Intervention” (LOI). No work to date has been published demonstrating improvement since these forms were implemented. The purpose of the present study was to obtain information about the use of LOI forms across Quebec hospitals and to identify gaps in practice as well as areas for improvement. A retrospective study was undertaken of 299 charts of patients who had died in three Quebec hospitals with a LOI ordered. Results were analysed through a principlism ethical framework. High compliance with the level of intervention ordered at the time of death was recorded, as well as high involvement of patient and/or family, demonstrating the efficiency of LOI in promoting respect for autonomy. Other results show delays in end-of-life care discussions in the course of the hospitalization. Only a small proportion of patients who died had a palliative care consultation, which may reflect equity issues in access to care. This study highlights the importance of the LOI in Quebec and the role it is playing in respect for end-of-life preferences as well as in the involvement of patients and families in the decision-making process. Training specific to end-of-life decision-making conversations would help support the LOI form’s use, as would developing provincial or national guidelines on the use of LOI to standardize organizational policies and practice around end-of-life care.     

Companion-Animal Caregiver Knowledge,Attitudes, and Beliefs Regarding End-of-Life Care

Although awareness of end-of-life care is growing within the veterinary field and there appears to be consumer demand for these services, it is unclear exactly what caregivers know about end-of-life options for their companion animals. Are companion-animal caregivers aware of the range of options for their nonhuman animals? What do they value most highly for their nonhuman animals at the end of life? Answers to these and other related questions about caregiver perceptions are important because what they know about end-of-life care and how they approach decision-making for their companion animals will shape the kind of care an animal receives. This article presents the results of a large survey exploring companion-animal caregivers’ knowledge, attitudes, and beliefs about end-of-life care, including in-home euthanasia, hospice and palliative care, financial commitment to end-of-life care, insurance usage, and level of comfort in providing care (e.g., subcutaneous fluids) in the home.     

Health care ethics and health law in the Dutch discussion on end-of-life decisions: a historical analysis of the dynamics and development of both disciplines

Over the past three or four decades, the concept of medical ethics has changed from a limited set of standards to a broad field of debate and research. We define medical ethics as an arena of moral issues in medicine, rather than a specific discipline. This paper examines how the disciplines of health care ethics and health care law have developed and operated within this arena. Our framework highlights the aspects of jurisdiction (Abbott) and the assignment of responsibilities (Gusfield). This theoretical framework prompted us to study definitions and changing responsibilities in order to describe the development and interaction of health care ethics and health law. We have opted for the context of the Dutch debate about end-of-life decisions as a relevant case study. We argue that the specific Dutch definition of euthanasia as 'intentionally taking the life of another person by a physician, upon that person's request' can be seen as the result of the complex jurisdictional process. This illustrates the more general conclusion that the Dutch debate on end-of-life decisions and the development of the two disciplines must be understood in terms of mutual interaction.     

Lessons from the field--health care experiences and preferences in a Latino community

As part of Midwest Bioethics Center's PATHWAYS to Improve End-of-Life Care project, we conducted an exploratory study in the Latino community of Kansas City to understand health beliefs, practices, and values, particularly as they relate to end-of-life care. We conducted ten focus groups and interviewed more than seventeen individuals who serve the Latino community in a social service, ministry, or health care capacity. We found that people were very concerned with "barriers to health care" (our term), and very willing to reveal their preferences for health care decision making and end-of-life care treatment options. We believe that bioethicists should conduct other, similar projects because they can improve our engagement with the Latino population and help Latinos find a greater voice in health care settings.     

Physician-assisted suicide and euthanasia: Disproportionate prevalence of women among Kevorkian's patients

End-of-life decisions are among the most difficult to make or study. When we examined these decisions made under the auspices and protection of stringent state laws, we found no gender bias among patients who chose to end their lives in the face of documented debilitating and terminal diseases. However, in the case of euthanasia as practiced by Jack Kevorkian, we found significant statistical bias against women. Moreover, other data have questioned whether all of Kevorkian's patients did, in fact, have debilitating and terminal illnesses. In this article, we explore why a gender disparity exists in end-of-life decision making. We conclude that if physician-assisted suicide and euthanasia are to be integrated into any end-of-life medical care policy, stringent legal and medical safeguards will be required. Institution of these safeguards should prevent selection bias in a vulnerable population hastening death for reasons other than medically justifiable conditions or issues of individual autonomy, and should ensure that end-of-life decisions are truly reflective of competent personal choice, free from economic considerations or societal pressure.     

Defining priorities for improving end-of-life care in Canada

Background

High-quality end-of-life care should be the right of every Canadian. The objective of this study was to identify aspects of end-of-life care that are high in priority as targets for improvement using feedback elicited from patients and their families.

Methods

We conducted a multicentre, cross-sectional survey involving patients with advanced, life-limiting illnesses and their family caregivers. We administered the Canadian Health Care Evaluation Project (CANHELP) questionnaire along with a global rating question to measure satisfaction with end-of-life care. We derived the relative importance of individual questions on the CANHELP questionnaire from their association with a global rating of satisfaction, as determined using Pearson correlation coefficients. To determine high-priority issues, we identified questions that had scores indicating high importance and low satisfaction.

Results

We approached 471 patients and 255 family members, of whom 363 patients and 193 family members participated, with response rates of 77% for patients and 76% for families. From the perspective of patients, high-priority areas needing improvement were related to feelings of peace, to assessment and treatment of emotional problems, to physician availability and to satisfaction that the physician took a personal interest in them, communicated clearly and consistently, and listened. From the perspective of family members, similar areas were identified as high in priority, along with the additional areas of timely information about the patient’s condition and discussions with the doctor about final location of care and use of end-of-life technology.

Interpretation

End-of-life care in Canada may be improved for patients and their families by providing better psychological and spiritual support, better planning of care and enhanced relationships with physicians, especially in aspects related to communication and decision-making.Although a “quality death” is an espoused right of Canadians,¹ for many dying patients and their families, it is not achieved. Recent reviews and observational studies describe considerable dissatisfaction with end-of-life care, indicating that there are still opportunities for improvement.^2–5Ideally, initiatives aimed at improving end-of-life care would be informed by the experiences and expectations of patients and their family members. However, such efforts are often hampered by inadequate definitions of quality of care and by suboptimal tools for measurement.^6–8 In a recent, large cross-sectional survey, the Canadian Researchers at the End of Life Network defined what matters most to seriously ill patients as they approach the end of life.⁹ Both patients and their family members reported that it was extremely important that they have trust and confidence in the physicians caring for them or their loved ones.⁹ Avoidance of unwanted life-support measures, effective communication, continuity of care, and feelings of life completion were also rated as highly important.⁹ We used these comprehensive ratings of importance to develop and validate a novel questionnaire to measure satisfaction with end-of-life care.¹⁰ Using this questionnaire, we formally evaluated the care received at the end of life in several Canadian centres.By targeting initiatives for change at gaps in quality, we can address the highest priorities for improving end-of-life care in Canada. Our objective was to identify high-priority areas for improvement in the care of patients with advanced, life-limiting diseases and in the perceived quality of that care by their families. We identified these areas by focusing on care-related issues that had been rated as important by patients and their family members but were rated low on the questionnaire measuring satisfaction with end-of-life care.     

Educating nurse leaders in ethics and end-of-life care

The Midwest Bioethics Center's Nursing Leadership Institute 1999 focused on leadership in ethics and end-of-life care. Twenty-four nurses attended the four-day retreat, during which national speakers, community experts, and Center staff facilitated the continuing education of nurse leaders dedicated to improving end-of-life care in their communities. All participants in the Institute agreed to design and implement a community project for their constituency. Project reports will be made prior to the next nursing leadership institute. This article examines the role of nurses in providing end-of-life care.     

End-of-life care in the nursing home--is a good death compatible with regulatory compliance?

By using relevant clinical practice guidelines for end-of-life care and by incorporating meaningful quality indicators into an effective continuous quality improvement program, nursing facilities can provide quality end-of-life care for their residents while complying with state and federal regulations.     

End-of-life decision-making in Canada: the report by the Royal Society of Canada expert panel on end-of-life decision-making

This report on end-of-life decision-making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters. Chapter 1 reviews what is known about end-of-life care and opinions about assisted dying in Canada. Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death. Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order. Chapter 4 reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form. Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document.     

Two Decades of Research on Euthanasia from the Netherlands. What Have We Learnt and What Questions Remain?

Two decades of research on euthanasia in the Netherlands have resulted into clear insights in the frequency and characteristics of euthanasia and other medical end-of-life decisions in the Netherlands. These empirical studies have contributed to the quality of the public debate, and to the regulating and public control of euthanasia and physician-assisted suicide. No slippery slope seems to have occurred. Physicians seem to adhere to the criteria for due care in the large majority of cases. Further, it has been shown that the majority of physicians think that the euthanasia Act has improved their legal certainty and contributes to the carefulness of life-terminating acts. In 2005, eighty percent of the euthanasia cases were reported to the review committees. Thus, the transparency envisaged by the Act still does not extend to all cases. Unreported cases almost all involve the use of opioids, and are not considered to be euthanasia by physicians. More education and debate is needed to disentangle in these situations which acts should be regarded as euthanasia and which should not. Medical end-of-life decision-making is a crucial part of end-of-life care. It should therefore be given continuous attention in health care policy and medical training. Systematic periodic research is crucial for enhancing our understanding of end-of-life care in modern medicine, in which the pursuit of a good quality of dying is nowadays widely recognized as an important goal, in addition to the traditional goals such as curing diseases and prolonging life.     

Impact of death and dying on the personal lives and practices of palliative and hospice care professionals

Background

Working within the landscape of death and dying, professionals in palliative and hospice care provide insight into the nature of mortality that may be of benefit to individuals facing the end of life. Much less is known about how these professionals incorporate these experiences into their personal lives and clinical practices.

Methods

This ethnographic inquiry used semi-structured interviews and participant observation to elicit an in-depth understanding of the impact of death and dying on the personal lives of national key leaders (n = 6) and frontline clinicians (n = 24) involved in end-of-life care in Canada. Analysis of findings occurred in the field through constant comparative method and member checking, with more formal levels of analysis occurring after the data-collection phase.

Results

Eleven specific themes, organized under three overarching categories (past, present and future), were discovered. Early life experiences with death were a common and prominent feature, serving as a major motivator in participants’ career path of end-of-life care. Clinical exposure to death and dying taught participants to live in the present, cultivate a spiritual life, reflect on their own mortality and reflect deeply on the continuity of life.

Interpretation

Participants reported that their work provided a unique opportunity for them to discover meaning in life through the lessons of their patients, and an opportunity to incorporate these teachings in their own lives. Although Western society has been described as a “death-denying” culture, the participants felt that their frequent exposure to death and dying was largely positive, fostering meaning in the present and curiosity about the continuity of life.Although preserving life is a central goal of medicine, in the end, death is an unavoidable outcome. Professionals in palliative and hospice care, working within the landscape of death and dying, are able to provide insight into death-related experiences and have the opportunity to incorporate these experiences into their personal and professional lives. The ability for death to foster meaning in life has been attested to by wisdom traditions and palliative care professionals alike. The latter usually provide rich accounts of the struggles of dying individuals, and in some instances, accounts of individuals who discovered meaning and purpose within this landscape.Although an expansive body of literature has evolved exploring the spiritual and existential impact of death and dying, these studies focused predominately on the impact on patients and occasionally on family members.^1–5 A small number of studies discussed the residual impact of end-of-life care within a localized group of health care providers; however, there is limited cross-sectional research explicitly investigating the long-term effect of death and dying on the personal and professional lives of individuals who are exposed to death and dying on a frequent basis.^6–15To address these gaps in the literature, this study explored the impact of death and dying on the lives of key leaders and frontline professionals in palliative and hospice care — individuals who arguably provide society and health care practitioners with the most authoritative discourse on end of life and its effect on life in general. This study was part of a larger ethnographic inquiry on the spirituality of palliative and hospice care professionals in Canada.     

Acculturation and end-of-life decision making: comparison of Japanese and Japanese-American focus groups

Variation in decision-making about end-of-life care among ethnic groups creates clinical conflicts. In order to understand changes in preferences for end-of-life care among Japanese who immigrate to the United States, we conducted 18 focus groups with 122 participants: 65 English-speaking Japanese Americans, 29 Japanese-speaking Japanese Americans and 28 Japanese living in Japan. Negative feelings toward living in adverse health states and receiving life-sustaining treatment in such states permeated all three groups. Fear of being meiwaku, a physical, psychological or financial caregiving burden on loved ones, was a prominent concern. They preferred to die pokkuri (popping off) before they become end stage or physically frail. All groups preferred group-oriented decision-making with family. Although advance directives were generally accepted, Japanese participants saw written directives as intrusive whereas Japanese Americans viewed them mainly as tools to reduce conflict created by dying person's wishes and a family's kazoku no jo--responsibility to sustain the dying patient. These findings suggest that in the United States Japanese cultural values concerning end-of-life care and decision-making process are largely preserved.     

What Are Physicians' Reasons for Not Referring People with Life-Limiting Illnesses to Specialist Palliative Care Services? A Nationwide Survey

Background

Many people who might benefit from specialist palliative care services are not using them.

Aim

We examined the use of these services and the reasons for not using them in a population in potential need of palliative care.

Methods

We conducted a population-based survey regarding end-of-life care among physicians certifying a large representative sample (n = 6188) of deaths in Flanders, Belgium.

Results

Palliative care services were not used in 79% of cases of people with organ failure, 64% of dementia and 44% of cancer. The most frequently indicated reasons were that 1) existing care already sufficiently addressed palliative and supportive needs (56%), 2) palliative care was not deemed meaningful (26%) and 3) there was insufficient time to initiate palliative care (24%). The reasons differed according to patient characteristics: in people with dementia the consideration of palliative care as not meaningful was more likely to be a reason for not using it; in older people their care needs already being sufficiently addressed was more likely to be a reason. For those patients who were referred the timing of referral varied from a median of six days before death (organ failure) to 16 days (cancer).

Conclusions

Specialist palliative care is not initiated in almost half of the people for whom it could be beneficial, most frequently because physicians deem regular caregivers to be sufficiently skilled in addressing palliative care needs. This would imply that the safeguarding of palliative care skills in this regular ‘general’ care is an essential health policy priority.     

No Negative Impact of Palliative Sedation on Relatives’ Experience of the Dying Phase and Their Wellbeing after the Patient’s Death: An Observational Study

Background

Palliative sedation is the widely-used intervention of administering sedating agents to induce a state of unconsciousness to take away a dying patient’s perception of otherwise irrelievable symptoms. However, it remains questionable whether this ethically complex intervention is beneficial for patients and whether the associated lack of communication in the last phase of life has a negative impact on relatives’ wellbeing.

Methods

An observational questionnaire study was conducted among relatives of a consecutive sample of patients who died a non-sudden death in the Erasmus MC Cancer Institute or in the hospice ‘Laurens Cadenza’ (both in Rotterdam) between 2010 and 2013.

Results

Relatives filled in questionnaires regarding 151 patients who had been sedated and 90 patients who had not been sedated. The median time since all patients had passed away was 21 (IQR 14–32) months. No significant differences were found in relatives´ assessments of the quality of end-of-life care, patients´ quality of life in the last week before death and their quality of dying, between patients who did and did not receive sedation, or in relatives’ satisfaction with their own life, their general health and their mental wellbeing after the patient’s death.

Conclusions

The use of sedation in these patients appears to have no negative effect on bereaved relatives’ evaluation of the patient’s dying phase, or on their own wellbeing after the patient’s death.     

Qualitative Evaluation of Advanced Care Planning in Early Dementia (ACP-ED)

Background

End-of-life-care is often poor in individuals with dementia. Advanced care planning (ACP) has the potential to improve end-of-life care in dementia. Commonly ACP is completed in the last six months of life but in dementia there may be problems with this as decision-making capacity and ability to communicate necessarily decrease as the disease progresses. Choosing the right time to discuss ACP with people with dementia may be challenging given the duration of the illness may be up to nine years.

Aims

To explore the acceptability of discussing ACP with people with memory problems and mild dementia shortly after diagnosis.

Methods

In-depth interviews were conducted with 12 patients and eight carers who had participated in ACP discussions and six staff members from a memory clinic and a community mental health team who had either conducted or attended the discussions for training purposes.

Results

Patients and carers found ACP a positive intervention that helped them think about the future, enabled people with dementia to make their wishes known, and resulted in their feeling relieved and less worried about the future. The importance of sharing the ACP documentation between health service providers was highlighted.

Conclusions

This qualitative evaluation of ACP in early dementia has encouragingly positive results which support the wider application of the intervention in memory services and community mental health teams. Strategies are suggested to support the implementation of ACP further in clinical practice.     

Ageing Prisoners’ Views on Death and Dying: Contemplating End-of-Life in Prison

Rising numbers of ageing prisoners and goals on implementing equivalent health care in prison raise issues surrounding end-of-life care for prisoners. The paucity of research on this topic in Europe means that the needs of older prisoners contemplating death in prison have not been established. To investigate elderly prisoners’ attitudes towards death and dying, 35 qualitative interviews with inmates aged 51 to 71 years were conducted in 12 Swiss prisons. About half of the prisoners reported having thought about dying in prison, with some mentioning it in relation with suicidal thoughts and others to disease and old age. Themes identified during data analysis included general thoughts about death and dying, accounts of other prisoners’ deaths, availability of end-of-life services, contact with social relations, and wishes to die outside of prison. Study findings are discussed using Allmark’s concept of “death without indignities,” bringing forth two ethical issues: fostering autonomy and removing barriers. Attributing the identified themes to these two ethical actions clarifies the current needs of ageing prisoners in Switzerland and could be a first step towards the implementation of end-of-life services in correctional systems.     

A Teaching Framework for Cross-cultural Health Care—Application in Family Practice

Significant demographic changes in patient populations have contributed to an increasing awareness of the impact of cultural diversity on the provision of health care. For this reason methods are being developed to improve the cultural sensitivity of persons responsible for giving health care to patients whose health beliefs may be at variance with biomedical models.Building on methods of elicitation suggested in the literature, we have developed a set of guidelines within a framework called the LEARN model. Health care providers who have been exposed to this educational framework and have incorporated this model into the normal structure of the therapeutic encounter have been able to improve communication, heighten awareness of cultural issues in medical care and obtain better patient acceptance of treatment plans.The emphasis of this teaching model is not on the dissemination of particular cultural information, though this too is helpful. The primary focus is rather on a suggested process for improved communication, which we see as the fundamental need in cross-cultural patient-physician interactions.