Caregiving at the end of life

Meeting the demands of chronic illness and disease states is challenging, at best. Too often, the chronicity of the illness hastens death. The physical, psychological, and sociological changes that accompany the death of an individual require attention and forethought if the life transition is to be made with elegance and grace. This article addresses the caregiving demands for the professional and familial/social support surrounding the chronically ill individual at the end of life. Focus is placed on the preparation of advance directives-legal documents that set clear boundaries for honoring the wishes of the patient.     

Decisions at the end of life

This paper presents a system for making decisions at the end of life. It emphasizes the role of patient autonomy and the importance of patient and family participation with the physician in decision-making. Definitions are presented for the terms: terminal illness, withholding and withdrawing life sustaining treatment, physician assisted suicide and euthanasia. Three cases are briefly described to illustrate the application of the decision-making system. A detailed discussion is then presented of the divergent views expressed by different authors about the moral differences or similarities between foregoing life sustaining treatment and physician assistance in dying. It is concluded that the view that these two actions are fundamentally different, as supported by the United States Supreme Court, in 1997, is the correct one. Physician assisted suicide (PAS) remains a controversial issue. Physicians and societies in individual countries must work out their own approaches to PAS. However, foregoing invasive or intensive life support in terminally ill patients consistent with their wishes is considered appropriate.     

Symptoms and suffering at the end of life in children with cancer

BACKGROUND: Cancer is the second leading cause of death in children, after accidents. Little is known, however, about the symptoms and suffering at the end of life in children with cancer. METHODS: In 1997 and 1998, we interviewed the parents of children who had died of cancer between 1990 and 1997 and who were cared for at Children's Hospital, the Dana-Farber Cancer Institute, or both. Additional data were obtained by reviewing medical records. RESULTS: Of 165 eligible parents, we interviewed 103 (62 percent), 98 by telephone and 5 in person. The interviews were conducted a mean (+/-SD) of 3.1+/-1.6 years after the death of the child. Almost 80 percent died of progressive disease, and the rest died of treatment-related complications. Forty-nine percent of the children died in the hospital; nearly half of these deaths occurred in the intensive care unit. According to the parents, 89 percent of the children suffered "a lot" or "a great deal" from at least one symptom in their last month of life, most commonly pain, fatigue, or dyspnea. Of the children who were treated for specific symptoms, treatment was successful in 27 percent of those with pain and 16 percent of those with dyspnea. On the basis of a review of the medical records, parents were significantly more likely than physicians to report that their child had fatigue, poor appetite, constipation, and diarrhea. Suffering from pain was more likely in children whose parents reported that the physician was not actively involved in providing end-of-life care (odds ratio, 2.6; 95 percent confidence interval, 1.0 to 6.7). CONCLUSIONS: Children who die of cancer receive aggressive treatment at the end of life. Many have substantial suffering in the last month of life, and attempts to control their symptoms are often unsuccessful. Greater attention must be paid to palliative care for children who are dying of cancer.     

Ethical considerations for HIV cure-related research at the end of life

Background

The U.S. National Institute of Allergies and Infectious Diseases (NIAID) and the National Institute of Mental Health (NIMH) have a new research priority: inclusion of terminally ill persons living with HIV (PLWHIV) in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego (UCSD) for PLWHIV who have a terminal illness, with a prognosis of less than 6 months.

Discussion

As end-of-life (EOL) HIV cure research is relatively new, the scientific community has a timely opportunity to examine the related ethical challenges. Following an extensive review of the EOL and HIV cure research ethics literature, combined with deliberation from various stakeholders (biomedical researchers, PLWHIV, bioethicists, and socio-behavioral scientists) and our experience with the Last Gift study to date, we outline considerations to ensure that such research with terminally ill PLWHIV remains ethical, focusing on five topics: 1) protecting autonomy through informed consent, 2) avoiding exploitation and fostering altruism, 3) maintaining a favorable benefits/risks balance, 4) safeguarding against vulnerability through patient-participant centeredness, and 5) ensuring the acceptance of next-of-kin/loved ones and community stakeholders.

Conclusion

EOL HIV cure-related research can be performed ethically and effectively by anticipating key issues that may arise. While not unique to the fields of EOL or HIV cure-related research, the considerations highlighted can help us support a new research approach. We must honor the lives of PLWHIV whose involvement in research can provide the knowledge needed to achieve the dream of making HIV infection curable.

     

Clinical decision-making at the end of life: the role of the patient's wish

Information about medical decision-making in the last stage of life and the wishes of terminally ill patients is scarce. At two hospital departments, we observed 16 multidisciplinary meetings and recorded 110 discussions concerning 74 patients. Thirty-three of these discussions concerned either starting or forgoing potentially life-prolonging therapy or applying potentially life-shortening medical interventions. The wishes of the patients were considered in 15 of these discussions. In 6 of these 15 discussions, the patient’s wish was unknown. In five discussions the decision was postponed to enable discussions with the patients. Potentially life-shortening decisions were never made if patients were known to disagree. No decisions about physician-assisted death were made. The study shows that medical end-of-life decisions are commonly shared between the involved caregivers and the patients.     

Important treatment aims at the end of life: a nationwide study among GPs

Background

Little is known about treatment aims during the last 3 months of life.

Aim

To investigate important treatment aims in the last 3 months of patients’ lives in cases of non-sudden death.

Design and setting

Mortality follow-back study in the Netherlands.

Method

Data were collected retrospectively in 2009 within the representative Sentinel Network of GPs in the Netherlands. GPs completed a standardised registration form.

Results

Data for 279 patients were studied. Of these, 55% died of cancer and 45% of another disease. Treatment was aimed at palliation for 73% of the patients in months 2 and 3 before death, and for 95% of the patients in the last week of life. Seven per cent received treatment aimed at cure in the last week of life. In a minority of patients, cure/life prolongation and palliation were simultaneously important treatment aims. In the last week of life and in the 2–4 weeks before death, cure was more frequently reported as an important treatment aim in patients with a non-cancer disease than in patients with cancer. In the 2–4 weeks before death, palliation was an important treatment aim for a larger proportion of patients with cancer than patients with other diseases.

Conclusion

Registration by GPs show that, in the last weeks and days of life, cure was more frequently reported as an important treatment aim in patients with a non-cancer disease than in patients with cancer. For a small number of patients, palliation and cure/life prolongation were simultaneously important treatment aims.     

Starting at the end

From the time when I entered immunology - in January 1965 at the Salk Institute for Biological Studies in La Jolla, California in the laboratories of Edwin (Ed) Lennox and Melvin (Mel) Cohn - my love has always been B lymphocytes and antibodies. I began my studies at the end of the developmental pathway of these B cells, with plasma cells. After more than 40 years in immunology, I have moved "backwards" over mature B cells, immature B cells, precursor B cells and lymphocyte progenitors to pluripotent hematopoietic stem cells. Initially it was an intellectual exercise to trace the unknown progenitor of known B-lineage cells; now it has become an experimental approach - to de- and re-differentiate B-lineage cells to earlier differentiation stages and to other lineages of hematopoietic cells.     

Mentalization in CALM psychotherapy sessions: Helping patients engage with alternative perspectives at the end of life

Objective

To identify how therapists invite patients with advanced cancer to engage with alternative perspectives about their illness trajectory and their end of life.

Care at the end of life: a novel curriculum module implemented by medical students.

End-of-life (EOL) and palliative care education in medical school curricula stand at a crossroads. Consensus has emerged that these topics merit systematic instruction throughout medical school training, yet curricula all too often consist of sporadic lectures focused on bioethics instead of clinical skills. The medical student authors identified a deficit in their curriculum, and designed and implemented an EOL curriculum module for their colleagues. In early 2000 the authors surveyed senior medical students about their experiences with EOL and palliative education, identifying deficits in clinical training and recommendations for interventions. They then designed a case-based educational module to teach EOL communication skills to medical students commencing clinical training. Faculty with national and local experience with EOL and palliative care reviewed the curriculum. Twelve of these faculty were oriented to the curriculum and then taught it in pairs to groups of 12 to 16 medical students in 2000 and 2001. The curriculum develops skills, attitudes, and knowledge relevant for communicating bad news and establishing treatment options in the EOL setting by utilizing trigger videos, group discussion, role plays, and case discussions. Approximately 75% of the 86 eligible students attended the module in 2000 and 2001. Feedback has guided the curriculum's refinement by the medical student authors. In addition, a standardized patient exercise, introduced in 2001, allowed students to reinforce the skills learned during the module.