Support Care Cancer (2000) 8 : 441–443 DOI 10.1007/s005200000196
Carl Johan Fürst
SUPPORTIVE CARE INTERNATIONAL
Perspectives on palliative care: Sweden
Published online: 19 September 2000 Q Springer-Verlag 2000 The references mentioned are in Swedish; they can be obtained from the author on request C.J. Fürst (Y) Palliative Care Services, Stockholms Sjukhem, Mariebergsgatan 22, 112 35 Stockholm, Sweden E-mail: cj.furst6stockholmssjukhem.a.se Phone: c46-8-6171200 Fax: c46-8-6534325 Department of Oncology, Karolinska Institute, Stockholm, Sweden
Background Palliative care in Sweden was initially, and to a certain extent still is, promoted by dedicated pioneers. In this, the situation here parallels that in most countries. The driving force has come from the needs of dying patients but also from a reaction against the denial of death within the traditional health care system. Today palliative care is undergoing a fast expansion and seems to be well recognised by the majority of health care professionals and politicians. Sweden is a vast country with a low population density and uneven population distribution. The vast majority, 80%, of the population lives in the southern part of the country. Health care has so far been largely associated with hospitals, and at least in the cities, patients prefer consulting a doctor in the emergency room of a hospital to calling the primary care physician. It is only in the last decade that a primary health care model with a closer link between a patient and the physician has been developed in an attempt to change
this pattern and support continuity in care. Most health care in Sweden is paid for through taxation. The private, non-supported, sector is small, but a change is in progress towards purchasing health care from other organisations and not only from the public sector. The voluntary sector is also small in Sweden, and during the decades of the “Swedish model” of the welfare state, individual initiatives of this kind have been rare. In 1992 a national reform (ÄDEL) was carried through, which was aimed at a clear distinction between health care and the care for elderly in different types of living arrangements, including nursing homes, for example. Usually, the county council administrations are responsible for health care in hospitals and primary care, whereas the municipal authorities bear the responsibility for general nonmedical care, and also for health care in nursing homes and other places of residence outside the original home. We now have a situation where home care has largely replaced hospital care, also for patients with palliative care needs. At the same time, the number of acute hospital beds has decreased dramatically. As a consequence, the number of nursing home patients with serious diseases has increased – which was not expected and is at odds with the intent of the reform.
The legal situation and economic conditions A general law on health care was implemented in 1984. An important concept in this law is the patients’ right to be informed about their disease, to be given information on possible treatments and to be involved as full partners in decision making. According to the law, the patients also have a right to decline interventions. It also includes guidelines on such significant aspects as continuity of care, respect for the individual and the protection of human dignity. These examples are of great importance for patients with incurable disease
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and those at the end of life. However, these ambitious goals are of course not generally realised throughout the entire health care system. The general welfare system in Sweden includes an option for individuals to stay away from work and care for a severely ill family member or friend for a limited period of time (currently 8 weeks total). The economic recompense is similar to what would be received if such persons were themselves ill. This is probably an important factor in the support for patients being cared for at home. Sweden has so far had a generously subsidised system for prescription drugs. The cost of medicine has therefore not been an important issue in family economics up to now. With decreasing subsidies some patients and families with low economic resources are now having financial problems during extended periods of home care. Opioids and other narcotic drugs necessary for palliative care are easily available, and the only restrictions lie in the special prescription forms needed for narcotic drugs. The overall consumption of opioids in Sweden is high in an international perspective, which is a possible indirect measure of pain treatment and analgesic prescription.
Official recognition of care at the end of life In 1979, an official governmental commission on health care at the end of life published a report with norms and standards for good palliative care (“terminal care”). Even at that time, the importance of education at all levels of health care was strongly stressed. The recommendation was to integrate treatment of pain and other symptom control measures and care of the dying into the existing health care system. The establishment of hospices or special units for dying patients was not supported. “The management of pain in the terminal stage of life, 1989” issued by the Swedish National Board of Health and Welfare contains guidelines for pain treatment and control of other symptoms, as well as some psychosocial issues. The publication was widely distributed. It has certainly contributed to the process of increasing professional awareness of pain and symptom control. A new, revised version of the pain management publication is under way. The “National Pharmacological Guidelines Handbook” is published every other year and includes clinically oriented and practical chapters on pain treatment and palliative care. There have been two official documents concerning cessation of treatment at the end of life. The first was published by the Swedish Medical Association in 1990. A second one was published by the Swedish National Board of Health and Welfare in 1992. Both guidelines
stress that euthanasia is against the law. However, the benefit of the patient is the leading principle and both publications support withholding or withdrawing treatment in a desolate situation. A governmental commission with experts, laymen and politicians produced a consensus on priorities in health care in 1995. It ranked palliative care as one of its highest priorities, second only to acute life-saving interventions. The media impact has been great, and palliative care professionals have been much encouraged by this consensus statement. However, the practical outcome in terms of high priorities for the dying has yet to be seen. The Federation of County Councils (Landstingsförbundet) has prepared a report on the practice of home care and on requirements for education. The Swedish Council on Technology Assessment in Health Care (SBU) has published (1999) a review of the evidence base on advanced home care, which was aimed at answering the questions as to whether home care is better or cheaper than hospital care. In total, more than 7,000 references were covered. However, few studies were graded as high-level, i.e. randomised and controlled, evidence. The main conclusions were that advanced home care is a good alternative to hospital care if the patient and family are well motivated, if the home care is well organised and if there are hospital beds as back-up. Patients and family were more satisfied with home care than with hospital care. There was no reliable evidence for either a higher or a lower cost of home care than of hospital care. However, the latter conclusion has been challenged. The Medical Research Council (MFR) in collaboration with the Swedish Cancer Society (Cancerfonden) and the Swedish Medical Association (Läkarsällskapet) established an ad hoc group with the purpose of looking at ways of supporting research in palliative care. A report was presented early in 2000 and included examples of ongoing research in palliative care in Sweden. It stated the importance of research in palliative care. It also presented examples of how research could be promoted by research funds. The delegation on medical ethics of the Swedish Medical Association (Läkarsällskapet) has issued invitations to a Nordic workshop on sedation at the end of life. The workshop will be aiming at the formulation of guidelines and a consensus among professionals. The Swedish Parliament has also appointed a committee made up of politicians, laymen and health care experts to work on the second official report on care at the end of life. A preliminary report has been published and has been sent to all universities and schools concerned with health care education and to all counties, municipal authorities, hospitals, and relevant professional and other associations with requests for feedback, and vast numbers of comments have been
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collected. In addition, public seminars have been held in different parts of the country to support general discussion of these issues. The media, professionals and laypersons have all shown great interest in the process of the report. A definitive report will be presented in early 2001. The proposals include such areas as education, organisation and research, and also patients’ rights and the family situation.
A third line of palliative care development constitutes consultation linked to the different types of palliative care services. The departments of oncology in Stockholm have multidisciplinary consultation services that focus specifically on palliative care for cancer patients. Other advisory teams in the country both provide advice to health care personnel and have direct responsibilities towards patients, covering cancer and other diagnoses.
Home care, hospices and consultation services Education and research “A hospital bed in the patient’s own home” was a slogan launched by Prof. Barbro Beck-Friis, a pioneer in advanced home care. She was a driving force behind the development of hospital-based home care teams in the county of Östergötland as long ago as in the 1970s. Many teams providing advanced home care have been established since then. The majority of these teams do provide palliative care. This advanced home care is by definition linked to in-patient units with round-theclock admission services for admit home-care patients. At least one member of each such multiprofessional team is always a physician. This advanced home care should be distinguished from the basic home care provided by primary care physicians and district nurses. Palliative home care is generally free of charge and is supported by the county councils. About 60 such teams exist throughout the country. Palliative care in-patient units and hospices have also been established in Sweden, but to a lesser extent than home care. The first hospices in Sweden were created independently of the national health care system. The first hospices were those in Bräcke, Gothenburg, and Ersta, Stockholm, both of which opened in 1980. Both were established in collaboration with the Church of Sweden Society for Diaconal Workers. The Axlagården hospice in Umeå was founded partly by the Swedish Cancer Society (Cancerfonden) as a unique investment by this research fund. The palliative care service provided by the non-profitmaking organisation Stockholms Sjukhem is another example. Much of the palliative care available is provided on geriatric and nursing home wards that have been adapted to a greater or lesser degree for the purpose. Some units have designated beds for palliative care on wards where the main profile is a different one, e.g. a geriatric ward. A small number of units are comprehensive palliative care services with in-patient wards, advanced home care, day care and consultation services and even teaching and research activities. The smallest “hospice” has only one bed and is situated in the far north.
The basic medical training has hitherto not included any well-defined courses in palliative care. However, pain treatment, symptom control, communication skills etc. are taught, for example in the courses on geriatrics, oncology and surgery. Palliative medicine is not a recognised medical speciality in Sweden. However, national training courses in palliative care and related subjects for physicians in training are held regularly. Nursing schools provide specialist training courses in palliative nursing. The first Swedish professorship in palliative medicine was established at the University of Linköping in 1997. A senior lectureship was instituted at the Karolinska Institute in Stockholm in 2000. Swedish textbooks on palliative care and related areas have been published.
Professional networks The Swedish Association for Palliative Medicine (SFPM) is a union of about 250 Swedish physicians with a special interest in palliative care/medicine. The SFPM was established in 1997. The Association holds a collective membership in the European Association for Palliative Care (EAPC) and meets twice yearly. Nursing associations and networks for other professional groups have recently also been established.
Conclusion Palliative care is well established in Sweden. This field is receiving a lot of attention at present. Professionals and organisations working in the field have to take up the huge challenge and accept the responsibility for grasping this unique opportunity. The universities have a particular responsibility for supporting the quality and development of palliative care through teaching and research, for example by establishing academic positions in palliative care and palliative medicine.
