Proper Palliative Care Research Articles

Questions and answers on the Belgian model of integral end-of-life care: experiment? Prototype? : "Eu-euthanasia": the close historical, and evidently synergistic, relationship between palliative care and euthanasia in Belgium: an interview with a doctor involved in the early development of both and two of his successors.

This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors.

Dying With Dementia

No detailed information has been available until now about the care setting, circumstances and place of death, symptom burden, and quality of care of persons with end-stage dementia in Germany. This cross-sectional study is based on a random sample of 5000 persons who died in the period from 25 May to 24 August 2008 in the German federal state of Rhineland-Palatinate. Their surviving relatives were contacted and asked to participate in a questionnaire survey. Data were obtained in this way for 310 persons with dementia and 931 persons without dementia. 42.4% of the persons with dementia died at home. Most patients and their relatives preferred death at home to death anywhere else (94.8% of patients, 77.5% of relatives). Persons living with at least one relative were more likely to die at home (adjusted odds ratio [aOR] 4.69, 95% confidence interval [CI] 2.71-8.11). According to information supplied by the relatives, the overwhelming majority of patients suffered, two days before death, from moderate to severe weakness (94.9%), fatigue (94.4%), disorientation/confusion (86.9%), and appetite loss (86.4%). Other common symptoms were anxiety (61.0%), tension (59.9%), dyspnea (56.7%), and pain (52.5%). The relatives were critical of the quality of care on standard hospital wards, citing the limited temporal availability of staff and limited emotional support. These data indicate the high symptom burden of persons with dementia in Germany at the end of their lives. They underscore the need for proper palliative care in all of the settings where persons with dementia die. Specialized in- and outpatient palliative care should not be offered only to patients with cancer, but should rather be made available to all who need it.

Palliative care - also in geriatrics?

Red Cross Clinic is the largest geriatric center in Norway (240 beds). Major parts of the center are: long time geriatric ward (215 beds), rehabilitation and acute ward (25 beds), day clinic (45 patients) and a teaching and research unit. A palliative care unit (10 beds) will be opened in spring 2000. In mai 1998 a national project: Palliative care for the elderly was opened at our center. The projects main goal is to develop and support proper palliative care to all severe ill and dying patients in Norway. In a prospective study we examined 179 consecutive deaths between 1998 and 1999. Average age was 84.5. Major symptom problems were pain, dyspnoea, death-rattle and anxiety. In the last 24 hours 83% of the patients received opioids, 67% of the cases morphine (mean daily dosage 31.8 mg). 37% of the patients received scopolamine (mean daily dosage 0.8 mg), 12% benzodiazepines and 3% of the patients haloperidol. 152 (85%) of the deaths were expected, 27 (15%) unexpected. In 137 patients (77%) open, honest, frank communication with patient or their nearest kin regarding the imminent death was possible. In our experience it is a myth that the relatives want doctors to practise "maximal therapy". All old patients in geriatric clinics and nursing homes need palliative care. We have found no international textbooks of geriatrics with chapters on palliative care or textbooks on palliative care with chapters on the elderly. They need doctors and nurses who are properly trained and educated in palliative care. In most countries in Europe this training and education is not provided.

Will assisted suicide kill hospice?

Hospice is often held out as an alternative to the need for assisted suicide. To date, those in the hospice movement have made any discussion of assistance in dying off-limits on the grounds that proper palliative care can address the concerns about pain that the terminally ill face. But, the movement toward assisted suicide raises questions about the future viability of the hospice movement in its current form. Many who see assistance in dying are concerned, not about pain, but about suffering and loss of dignity. Many are not terminally ill but terrified at the prospect of disability and loss of cognitive capacities. Unless hospice addresses these concerns it is not likely to survive in the face of pressures to legalize assisted suicide.

Proper palliative care should reduce requests for euthanasia and physician-assisted suicide

Dr. Foley's presentation is eloquent and particu­ larly timely. As seen by last November's elec­ tion results, including a referendum legalizing physician-assisted suicide in Oreqon,' the pub­ lic is deeply split regarding this issue. We agree whole­ heartedly with her central message, namely that improved physician-patient communication, respect for patient-centered care, better physician judgment to with­ draw or withhold care and familiarity with the principles and practices of palliative care would definitely reduce the need to legalize physician-assisted suicide and euthanasia:' Dr. Foley emphasizes the theme that no patient should wish for euthanasia because of inadequate treatment of pain. It is a primary responsibility of physicians and other caregivers to ensure that patients do not request to die because of unrelieved paln. Excessive emphasis on euthanasia in many cases has distracted patients and health providers from the manageable task of providing optimal management of pain and other symptoms. Dr. Foley reviews the experience in the Netherlands and points out the dangers of a slippery slope inherent in legalization of euthanasia.':' Certain aspects of the expe­ rience in the Netherlands reinforce this concern. One sur­ vey reported that approximately two thirds of nursing home residents in Holland were afraid that their doctors may one day kill them. Involuntary euthanasia has not been rare, and has been applied both to the elderly and to