Factors That Affect Quality of Dying and Death in Terminal Cancer Patients on Inpatient Palliative Care Units: Perspectives of Bereaved Family Caregivers

ContextThere is an increasing use of palliative care units (PCUs) for the treatment of terminally ill cancer patients. Thus, it is important to evaluate the care and quality of life of terminally ill cancer patients treated in PCUs so that improvements can be made. Limited research has investigated the quality of dying and death in PCUs.ObjectivesThe aim of this study was to identify factors associated with the quality of dying and death for terminally ill cancer patients in PCUs.MethodsData were collected from 570 bereaved family caregivers of terminally ill cancer patients. All patients were registered and died in one of the 40 inpatient PCUs designated by the Korean Ministry of Health and Welfare. We assessed the perceived timing of referral to a PCU; the quality of end-of-life cancer care with the Care Evaluation Scale; and the quality of dying and death with the Good Death Inventory.ResultsThe perception of appropriate timing of referral, use of a community-based PCU, and higher quality of cancer care as assessed by the Care Evaluation Scale were associated with good dying and death in all domains of the Good Death Inventory.ConclusionThe good quality of end-of-life care in a PCU improves the quality of dying in terminally ill cancer patients. The data have the potential to guide the development of interventions aimed at achieving a good quality of dying for patients with terminal cancer.     

The experience of an academic as care giver: Implications for education

Abstract

This article describes the experience of a nurse educator who participated in a 1-month course in the care of terminally ill and dying patients at St. Christopher's Hospice in London.

The writer, highlighting some features of this internationally known and respected model, discusses her personal reactions and the implications her experience could have for education. Emphasis is placed on the need for educators to become more aware of the demands—physical, emotional, and spiritual—which are made on those caring for terminally ill and dying patients, and of the unique personal needs that each care-giver may bring to this experience.

It is noted that not all persons who desire to care for terminally ill and dying patients necessarily have the capacity to do so, those who do require the assistance of a caring community.     

Dying at home: Experience of the Verdun local community service centre

ObjectiveTo demonstrate that it is possible for a team of palliative care nurses in an urban centre to care for more than 50% of their terminally ill patients at home until they die, and that medical care delivered in the home is a determining factor in death at home versus death in a hospital.DesignAnalysis of place of death of terminally ill patients who died in 2012 and 2013 (N = 212) and who had been cared for by palliative care nurses, by type of medical care.SettingThe centre local de services communautaires (CLSC) in Verdun, Que, an urban neighbourhood in southwest Montreal.ParticipantsA total of 212 terminally ill patients.ResultsOf the 212 patients cared for at home by palliative care nurses, 56.6% died at home; 62.6% received medical home care from CLSC physicians, compared with 5.0% who did not receive medical home care from any physician.ConclusionCombined with a straightforward restructuring of the nursing care delivered by CLSCs, development of medical services delivered in the home would enable the more than 50% of terminally ill patients in Quebec who are cared for by CLSCs to die at home—something that most of them wish for.Many articles have been published about the factors that influence the possibility of dying at home for terminally ill patients. When brought together, these factors create a “complete” team of palliative home care professionals, with nursing and medical expertise in palliative home care, 24-hour access to nursing and medical care, access to social workers and occupational therapists able to work with palliative care patients in the home, and home supports, as needed.^1,2 The centre local de services communautaires (CLSC) in Verdun, Que, created such a team.Quebec has a vast network of CLSCs that offer general nursing care; the services of social workers, occupational therapists, and physiotherapists; and various forms of practical support in the home. Very few CLSCs offer dedicated palliative nursing care and even fewer offer medical care in the home to terminally ill patients, in spite of the fact that most of these patients want to remain at home and that access to a palliative home care team reduces hospitalizations and in-hospital deaths of terminally ill patients while providing comparable quality of care.³     

When to treat dehydration in a terminally ill patient?

 The need to treat dehydration in terminally ill patients has become a very controversial topic. Numerous reports in the literature illustrate opposing viewpoints from both clinical and ethical perspectives. Arguments for the maintenance of hydration in terminally ill patients have tended to come from "the traditional medical model". Many health care professionals looking after terminally ill patients have reacted to the generalized use of intravenous fluids in dying patients and the perceived negative effects of this management. Our palliative care group has argued that the viewpoint that dehydration in dying patients is not a cause of symptom distress overlooks commonly reported problems, such as agitated delirium, that can be prevented or reversed by the management of dehydration. This review presents a summary of the traditional arguments, a different perspective on the controversy, biochemical parameters reported in terminally ill cancer patients, recent dehydration research, and the use of hypodermoclysis and rectal hydration. We conclude that the data reported to date are insufficient to allow a final conclusion on the benefit or harm of dehydration in terminally ill patients. Nevertheless, it is worth considering that while some dying patients may not suffer any ill effects from dehydration, there may be others who do manifest symptoms, such as confusion or opioid toxicity, that might be alleviated or prevented by parenteral hydration.     

Relationships Between Advanced Cancer Patients' Worry About Dying and Illness Understanding,Treatment Preferences,and Advance Care Planning

ContextPatients with advanced cancer often worry about dying. Less is known about the role of worry in decision making regarding future care.ObjectivesTo explore relationships between patients' worry about dying and their illness understanding, treatment preferences, and advance care planning (ACP).MethodsThis cross-sectional study used baseline data from a primary palliative care intervention trial. All participants had metastatic solid tumors. Using patients' response to I worry about dying from the Functional Assessment of Chronic Illness—Palliative Care survey instrument, univariate and multivariate analyses assessed associations with illness understanding, treatment preferences, and ACP.ResultsOf 672 patients, 47% reported worrying about dying not at all, whereas 9.7% worried quite a bit or very much. In regression analysis, compared with patients who reported not worrying about dying, those who reported high levels of worry were more likely to describe themselves as terminally ill (adjusted odds ratio [AOR] = 1.98; 95% CI = 1.10–3.54; P = 0.021) and prefer life-extending therapy over symptom-focused care (AOR = 2.61; 95% CI = 1.30–5.22; P = 0.007). They were less likely to have completed an advance directive (AOR = 0.49; 95% CI = 0.25–0.94; P = 0.032). The same relationships were seen using patients' response to I feel scared about my future from the Herth Hope Index.ConclusionPatients with advanced cancer who worry about dying are more likely to identify as terminally ill and desire life-extending treatment and are less likely to engage in ACP. Understanding how patients cope with worry and make medical decisions is important in providing quality care to these patients.     

Baxter v. Montana,Libertarianism, and End-of-Life: The Ripe Time for a Paradigm Shift

ABSTRACT

Baxter v. Montana (2009 WL 5155363 [Mont. 2009]) is a recent decision from the Montana Supreme Court that provides new legal insight into the societal issue of aid in dying. This case involves interests of persons with terminal illness, medical practitioners, law enforcement, legislative and judicial bodies, as well as the citizens of Montana. A summary judgment ruling at the Montana district court level was based almost entirely on a constitutional fundamental rights analysis. In contrast, the Montana Supreme Court affirming decision was based almost entirely on a statutory rights analysis. Both rulings from the Montana courts support the position that licensed prescribers in Montana who provide aid in dying assistance to terminally ill patients have some immunity from criminal prosecution. Each side in the case argued what they believed to be the intents and purposes of the people of Montana. Baxter v. Montana illustrates different methods to determine the will of the people concerning aid in dying and public policy. This case very subtly suggests a paradigm shift may be occurring in aid in dying policy.     

Cessation of the artificial delivery of food and fluids: defining terminal illness and care

The authors argue that those permanently unconscious are by definition terminally ill and suffering from a fatal pathology, because medical treatment in their cases will not lead to a restoration of health and will prolong the dying process. They include, as medical treatment, the artificial provision of sustenance and hydration and argue that this intervention is optional when it is useless for returning the person to cognitive/ affective activity or when it is burdensome. Finally, they analyze the notion of care and argue that even when the artificial delivery of sustenance is considered to be care (wrongly, in their view), it can still be legitimately refused or withdrawn when it becomes unduly burdensome.     

Death education: A survey of american dental schools

Abstract

With a rapidly aging population and with the acquired immunodeficiency syndrome (AIDS) increasing the population of terminally ill patients for dentists, preparation in dealing with dying, death, and bereavement could enhance the dentist's role as a health care provider. A survey of American dental schools was performed to assess the current status of thanatology offerings in the curriculum. Results received from 97% of the schools revealed that only 7 offer anything in death and dying, and 50 have no formal death education. Eighteen dental schools, however, have plans to include thanatology in their curriculum within the next 10 years.     

Suicide and terminal illness

Abstract

Suicide among persons with terminal illness has assumed increased importance, because new serologic tests have allowed for earlier diagnosis and better palliative care has rendered many terminal illnesses chronic, with the result that the dying phase is more protracted. In addition, there has been increased public interest in physician-assisted suicide and voluntary euthanasia. After an overview of the epidemiology of suicide among the terminally ill, the clinical assessment and management of suicidal terminally ill patients are discussed, with an emphasis on how assessment and management of these patients differ, from the strategies used to evaluate and treat other suicidal individuals. The methodological issues inherent in studying this area are also pointed out.     

Concepts and Definitions for “Actively Dying,” “End of Life,” “Terminally Ill,” “Terminal Care,” and “Transition of Care”: A Systematic Review

ContextThe terms “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care” are commonly used but rarely and inconsistently defined.ObjectivesWe conducted a systematic review to examine the concepts and definitions for these terms.MethodsWe searched MEDLINE, PsycINFO, Embase, and CINAHL for published peer-reviewed articles from 1948 to 2012 that conceptualized, defined, or examined these terms. Two researchers independently reviewed each citation for inclusion and then extracted the concepts/definitions when available. We also searched 10 dictionaries, four palliative care textbooks, and 13 organization Web sites, including the U.S. Federal Code.ResultsOne of 16, three of 134, three of 44, two of 93, and four of 17 articles defined or conceptualized actively dying, end of life, terminally ill, terminal care, and transition of care, respectively. Actively dying was defined as “hours or days of survival.” We identified two key defining features for end of life, terminally ill, and terminal care: life-limiting disease with irreversible decline and expected survival in terms of months or less. Transition of care was discussed in relation to changes in 1) place of care (e.g., hospital to home), 2) level of professions providing the care (e.g., acute care to hospice), and 3) goals of care (e.g., curative to palliative). Definitions for these five terms were rarely found in dictionaries, textbooks, and organizational Web sites. However, when available, the definitions were generally consistent with the concepts discussed previously.ConclusionWe identified unifying concepts for five commonly used terms in palliative care and developed a preliminary conceptual framework toward building standardized definitions.     

Agency behind bars: Advance care planning with aging and dying offenders

ABSTRACT

Aging and terminally ill individuals in U.S. prisons are increasing, making critical the need for appropriate end-of-life (EOL) care and advance care planning (ACP). Applying Bandura’s agentic perspective, the authors examined 20 aging/dying offenders’ EOL preferences and ACP. Findings include 6 themes: decisions in the shadow of the past, what works best for me, feeling blessed, what is really going on, can anyone be trusted, and turning agency over to someone else. This study provides critical information that will assist professionals who work with dying offenders, as it presents a vivid illustration of their dying process.     

Hope Theory: A Framework for Understanding Suicidal Action

Abstract

A stratified random sample of 226 U.S. nursing schools was surveyed to determine the extent and nature of current death education training for nursing students. Of the 205 responding schools, 5 percent reported offering a required death and dying course, while an additional 39.5 percent indicated that a death and dying course was available for their students on an elective basis. The authors challenge the current pedagogical approach toward death education in U.S. nursing schools. They propose the need for the development of a model that would formally link a death education course, or courses, with the clinical phase of training. It is hypothesized that such an approach would enhance the nursing students' recognition and management of their feelings regarding death and dying and therefore result in more effective means of relating to terminally ill patients.     

BOOK REVIEWS

ABSTRACT

The author argues that Terri Schiavo was a “person with a disability” who faced disability discrimination, a view that is consistent with national disability rights groups. The author notes that Schiavo was not “terminally ill” and that feeding tubes should not be considered “medical equipment.” The belief that people with severe disabilities want to die is questioned, since many people who acquire severe disabilities change their minds about suicide, and implications for advance directives are explored. Finally, the author notes that although Terri Schiavo was a disabled woman, women's groups did not take up her cause.     

Interprofessional education in palliative care: A pilot project using popular literature

Summary

A need to introduce the concepts of death and dying to the medical and health sciences undergraduate curriculum was identified at the University of Ottawa, Ontario, Canada. As care of the terminally ill is complex and requires the collaborative involvement of a diverse group of health care professionals, an interprofessional educational approach was utilized to address this need. A seminar course was developed using popular literature as the basis for learning, and offered to first and second year medical students, fourth year nursing students and graduate students in spiritual care. The discussion of roles and the provision of care within the context of works of selected literature provided a focus that enabled the students to transcend their disciplinary barriers, and to better understand the perspectives and contributions that other team members bring to patient care. Evaluation findings suggest that meaningful interprofessional education can be introduced effectively to students either prior to or while they are maturing in their professional roles.     

Providing palliative care for cancer patients: the views and exposure of community general practitioners and district nurses in Japan

ContextThe role of general practitioners (GPs) and district nurses (DNs) is increasingly important to achieve dying at home.ObjectivesThe primary aim of this region-based representative study was to clarify 1) clinical exposure of GPs and DNs to cancer patients dying at home, 2) availability of symptom control procedures, 3) willingness to participate in out-of-hours cooperation and palliative care consultation services, and 4) reasons for hospital admission of terminally ill cancer patients.MethodsQuestionnaires were sent to 1106 GP clinics and 70 district nursing services in four areas across Japan.ResultsTwo hundred thirty-five GPs and 56 district nursing services responded. In total, 53% of GPs reported that they saw no cancer patients dying at home per year, and 40% had one to 10 such patients. In contrast, 31% of district nursing services cared for more than 10 cancer patients dying at home per year, and 59% had one to 10 such patients. Oral opioids, subcutaneous opioids, and subcutaneous haloperidol were available in more than 90% of district nursing services, whereas 35% of GPs reported that oral opioids were unavailable and 50% reported that subcutaneous opioids or haloperidol were unavailable. Sixty-seven percent of GPs and 93% of district nursing services were willing to use palliative care consultation services. Frequent reasons for admission were family burden of caregiving, unexpected change in physical condition, uncontrolled physical symptoms, and delirium.ConclusionJapanese GPs have little experience in caring for cancer patients dying at home, whereas DNs have more experience. To achieve quality palliative care programs for cancer patients at the regional level, educating GPs about opioids and psychiatric medications, easily available palliative care consultation services, systems to support home care technology, and coordinated systems to alleviate family burden is of importance.     

Educational needs of the terminally ill student

It is the norm for medical professionals to encourage school reentry for the terminally ill student. Their commitment to and belief in the benefits of school involvement are to be commended. It is essential, however, that the hospital staff be directly involved with facilitating school reentry. Research into the needs of chronically and terminally ill students has historically been done by the medical community. Educators lack basic knowledge and the expertise to ensure that the school experience will be successful. It is hoped that the educational community will become more aware and actively seek to guarantee that every child is provided with an appropriate education in future years. For the time being, however, the medical professional must assume the role of coordinator, bringing together the terminally ill child, parents, peers, and educators, and fostering open, ongoing communication between all. The success of these efforts will bring about healthy attitudes toward death and dying; a rich, rewarding experience for all children involved; and ultimately an opportunity for a dying child to live life to its fullest.     

The experience of an academic as care giver: Implications for education

This article describes the experience of a nurse educator who participated in a 1-month course in the care of terminally ill and dying patients at St. Christopher's Hospice in London.

The writer, highlighting some features of this internationally known and respected model, discusses her personal reactions and the implications her experience could have for education. Emphasis is placed on the need for educators to become more aware of the demands—physical, emotional, and spiritual—which are made on those caring for terminally ill and dying patients, and of the unique personal needs that each care-giver may bring to this experience.

It is noted that not all persons who desire to care for terminally ill and dying patients necessarily have the capacity to do so, those who do require the assistance of a caring community.