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.     

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.     

Moral Distress Reexamined: A Feminist Interpretation of Nurses’ Identities, Relationships, and Responsibilites

Moral distress has been written about extensively in nursing and other fields. Often, however, it has not been used with much theoretical depth. This paper focuses on theorizing moral distress using feminist ethics, particularly the work of Margaret Urban Walker and Hilde Lindemann. Incorporating empirical findings, we argue that moral distress is the response to constraints experienced by nurses to their moral identities, responsibilities, and relationships. We recommend that health professionals get assistance in accounting for and communicating their values and responsibilities in situations of moral distress. We also discuss the importance of nurses creating “counterstories” of their work as knowledgeable and trustworthy professionals to repair their damaged moral identities, and, finally, we recommend that efforts toward shifting the goal of health care away from the prolongation of life at all costs to the relief of suffering to diminish the moral distress that is a common response to aggressive care at end-of-life.     

Challenges in End-of-Life Decisions in the Intensive Care Unit: An Ethical Perspective

When making end-of-life decisions in intensive care units (ICUs), different staff groups have different roles in the decision-making process and may not always assess the situation in the same way. The aim of this study was to examine the challenges Danish nurses, intensivists, and primary physicians experience with end-of-life decisions in ICUs and how these challenges affect the decision-making process. Interviews with nurses, intensivists, and primary physicians were conducted, and data is discussed from an ethical perspective. All three groups found that the main challenges were associated with interdisciplinary collaboration and future perspectives for the patient. Most of these challenges were connected with ethical issues. The challenges included different assessments of treatment potential, changes and postponements of withholding and withdrawing therapy orders, how and when to identify patients’ wishes, and suffering caused by the treatment. To improve end-of-life decision-making in the ICU, these challenges need to be addressed by interdisciplinary teams.     

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.     

Bioethics for clinicians: 15. Quality end-of-life care

A physician who receives a call from the emergency department to see a patient with heart failure will have a clear framework within which to approach this problem. The thesis of this article is that physicians do not have an analogous conceptual framework for approaching end-of-life care. The authors present and describe a framework for end-of-life care with 3 main elements: control of pain and other symptoms, the use of life-sustaining treatments and support of those who are dying and their families. This 3-part framework can be used by clinicians at the bedside to focus their effort in improving the quality of end-of-life care.     

Learning from different cultures--a cultural diversity project in end-of-life care

In January 1997, Midwest Bioethics Center (MBC) launched PATHWAYS to Improve End-of-Life Care, a three-year multifaceted community initiative to improve care of the dying in the Kansas City metropolitan area. Pathways focused on professional education and development, institutional reform, and public engagement, using thirteen different strategies to accomplish dozens of projects. Ultimately, more than 2,000 professionals and other community leaders were involved and more than 600 organizations participated. This article describes a cultural diversity project on end-of-life care that developed from this program.     

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.     

CMA leads drive to improve physicians' management skills

The Physician Manager Institute, developed 12 years ago by the CMA and the Canadian College of Health Service Executives, provides training that is designed to improve physicians'' management and leadership skills. Changes within health care are prompting more doctors to seek this training in order to become managers within a reformed health care system.     

Focus: The Aging Brain: Palliative Care and the Humanities: Centralizing the Patient at the End of Life

Palliative care is a quickly growing facet of modern medicine. While scientific advancements have broken new ground for the possibilities of end-of-life care, sensitive treatment of the patient as an individual has lagged behind and has frequently led to an unsatisfactory experience for patients, families, and the medical community at large. This essay argues that centralizing patients during the terminal phases of treatment by using humanistic perspectives has the potential to bring new meaning and improved effectiveness to patients and physicians alike.     

Nurse practitioners in primary care iv. Impact of an interdisciplinary team on attitudes of a rural population.

Attitudes toward the expanded role of nurse practitioners in primary care (family practice nurses) have been determined for persons from a semirural area who chose as their principal souce of care an interdisciplinary family medical centre (FMC) incorporating two nurse practitioners, and those for whom the FMC was not the usual source of care. Data were obtaine using"before-and-after" structured interviews of a random sample of persons living in a southern Ontario township. Slowly evolving, nonsignificant trends of greater acceptance were observed among patiens who had dealth with family practice nurses. The greatest change observed was an increased acceptance of the nnurse by FMC users as the person who would be contacted as a second choice if theirfirst choice, usually a physician, could not be reached in specific worrry-inducing situations. FMC users depended more on nurses to provide information. A conclusion of increased general acceptance of the family practive nurse by FMC users is supported by a 34 per cent higher use of nurses by FMC patients compared to other persons of comparable characteristics living in the same community.     

The Canadian Institute of Aging: knowledge, innovation and action

Led by innovation, leadership, transparency and excellence, the Institute of Aging provides a focal point for Canadian research on aging and pursues the fundamental goal of advancing knowledge in the field of aging to improve the quality of life and health of older Canadians. The Institute has carried out a range of important national and international strategic initiatives in aging, and has become influential in leveraging funding, enhancing research capacity and creating a new impetus in research on aging in Canada. The Institute engages and supports the scientific community, encourages interdisciplinary and integrative health research and fosters not only on the creation of new knowledge, but also on the translation of that knowledge into improved health, a strengthened health care system, and new health products and services for Canadians. The IA focuses on five priority areas of research: healthy and successful aging, biological mechanisms of aging, cognitive impairment in aging, aging and maintenance of autonomy, and finally, health services and policies relating to older people. The efforts of the IA are guided by five strategic orientations: to lead in the development and definition of strategic directions for Canadian research on aging ; to build research capacity in the field of aging ; to foster the dissemination, transfer and translation of research findings in policies, interventions, services and products ; to promote the importance of, and the need for, a research community in aging ; and to develop and support capacity-building and strategic research initiatives in the field of aging.     

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.     

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.     

Community health services.

The Tomlinson report, with its emphasis on primary and community care, offers great scope to community health services, for long the poor relation of the NHS, and particularly poorly resourced in London. The aim is to create services that break down the barriers between primary, secondary, and tertiary health care and concentrate on providing high quality care tailored to individual patients'' needs. Thus a range of flexible options needs to be developed between acute hospital based care and the standard home care arrangements currently provided by district nurses. Examples, include hospital at home schemes, nursing beds, and rehabilitation beds. Together community and primary care services need to consider weekend coverage, to conduct research, and to become a setting for education. The infrastructure for primary and community care must, however, be put in place before acute facilities are shut.     

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.     

Een handreiking voor familieleden over palliatieve zorg bij dementie: evaluatie door zorgverleners en familieleden

Families of nursing home residents with dementia are usually involved in care and treatment decisions. To this end, family needs to be informed on the course of the dementia and possible palliative care. Based on a Canadian booklet, we developed an adapted version for use in the Netherlands. Elderly care physicians (n = 30), nurses (n = 38), and bereaved families (n = 59) evaluated the booklet and possible implementation strategies. All respondents confirmed that in general, there is a need of an information brochure on comfort care and end-of-life issues for families. Most (93%) families believed they would have found the booklet useful when received earlier. Compared to the physicians, nurses more frequently found the booklet useful to most or all families (p = 0.04). Acceptance, as measured on an 8-item scale, was highest among families and lowest among physicians. Overall usefulness was often perceived as high (means 7.9 to 8.3; scale range 0-10; SD 0.9 to 1.4) and did not differ across groups of respondents (p = 0.29). All respondents agreed that professional caregivers should have a role in providing the booklet. Additionally, half (53%; no difference across groups) favoured availability of the booklet through families' own initiative; some already before admission. In conclusion, there is a high need for written information on palliative care. The booklet is highly appreciated. A further improved version may support professional and family caregivers in practice.     

Quantitative assessment of the quality of medical care provided in five family practices before and after attachment of a family practice nurse.

The standards of patient care were maintained in five urban medical practices after the introduction of family practice nurses. Evaluations were achieved before and after their appointment by the indicator condition method. Minimal explicit criteria for the management of patients with 12 indicator conditions and by the use of 14 drugs were approved by an ad hoc peer group of community physicians. These cirteria were applied to the five practices by the use of a single-blind design and the abstraction of unaltered medical records. A standardized score for each practic e permitted comparison of scores for the management of indicator conditions and for the clinical use of drugs before and after attachment of the family practice nurses. For each of the indicator conditions and the drugs assessed in the five practices similar levels of adequacy were observed in the two study periods. These explicit (objective) audit resutls agreed with the implicit (subjective) assessments of the family practice nurses by their physician colleagues.