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In Sweden, questioning the model of compromise.

In Sweden, Questioning the Model of Compromise

Sweden is in many ways a homogeneous and politically stable country. It has a centralized government, meaning that more political and legal decisions are made by the central government and the ministries in Stockholm than would be the case in a country like the United States.

Within this system, there is a long tradition of governmental commissions. When faced with a complicated issue, the government often appoints a committee to review the evidence and propose alternative courses of action. Underlying this tradition is a strong belief in rational approaches to problems, in planning and piecemeal social engineering. The Swedish model presupposes willingness to compromise.

In Sweden, the health care system is run by the state and services are in principle free, except for a small fee paid at every visit. There are private clinics, but no hospitals run by religious institutions.

This cultural and political context provides the background to current debates in Sweden over the definition and criteria for death, and regulations regarding organ transplantation.

Brain Death

As early as the 1960s, there were debates in Sweden regarding the criteria for death. Yet it was not until May 1987 that the Swedish Parliament passed a law stipulating that when the brain has totally and irreversibly ceased to function, a person is dead. The law took effect on January 1, 1988.

In traditional Swedish style, this legislation had been proposed by a governmental commission, appointed by the Secretary of Health and Social Affairs in 1982. The commission prosented a 322-page report with appendices to the Secretary in December 1984. [1]

The commission acknowledged that as a result of modern medical technology, accepted criteria for death of cessation of heart activity and circulation could not be applied generally. In intensive care units, respirators and other machines can be used to keep circulation going. The commission argued that if the brain functions are totally and irreversibly lost, then the person is no longer alive.

Other main reasons for terminating respirator support, etc., after the total and irreversible loss of brain functions include the facts that not doing so:

* denies the patient's right to die with dignity:

* inspires relatives with a false hope.

In understanding these issues from a Swedish perspective, it is important to ask who the stakeholders are. Who is affected directly or indirectly by acceptance of this proposal?

Patients have a right to die with dignity. If all functions of the brain are totally and irreversibly lost, medical treatment should be terminated. Exceptions should be allowed only in certain specified cases, of example, to save the life of a baby in the case of a pregnant mother fatally harmed in a traffic accident.

It is also argued that if treatment is continued until circulatory activity ceases, then both the care-giving personnel and the relatives of the patient have to face a difficult wait of up to a week or more, for which there is no medical justification. This becomes especially complicated if transplantation of organs from the deceased is contemplated; it becomes impossible to let the relatives be present and say farewell to the dead in a quiet and dignified way.

A much debated point was the need for any legislation on this issue. A 1973 circular from the National Board of Health and Welfare already permitted termination of respirator treatment upon determination that the functions of the brain of a patient have totally and irrevocably ceased (MF 1973:29, changed 1982).

Those who supported the proposed bill pointed out that there is an obvious ethical difference between turning off the respirator because the patient has died, and--if brain-related criteria are not accepted--killing the patient by turning off the respirator.

Organ Transplants and Autopsies

The committee's task did not include the problems of organ transplanation. But their report pointed out that if its proposals were accepted, this would have consequences for the possibility of transplanting hearts and other vital organs. For those who want to donate an optimally viable organ upon death, the new law represents an improvement. The public debate in the mass media, moreover, focused very much on the question of transplantation, which is now under consideration by the government's Transplantation Commission.

It is, of course, quite possible to accept brain-related criteria of death and at the same time insist on protecting the body of the deceased. In Sweden there are many practical, legal, and ethical problems in this area that need to be considered carefully in the near future: 1) How ought the dead body be treated? 2) Who owns the dead body? 3) What practical arrangements should be made with the deceased? 4) Who is ultimately responsible for this?

Many people feel that in matters concerning the use of advanced technology (especially artificial means for supplying nutrition and hydration), and in the donation of organs, the burden of decision should not be put on the patient's relatives.

Care of the Dying

The care of the dying in Sweden needs reconsideration, with a great responsibility falling on the heads of clinics. They must ensure that there are possibilities for those who want to say farewell to their departed relatives in a dignified way, and to provide them with alternatives so that they can say good-bye both before and after respirator support is terminated. If the family wants to be present at this moment, it is necessary to explain to them what can happen (spinal reflexes, etc.).

The termination or withholding of life-sustaining treatment for non-brain-dead patients is a very controversial issue in Sweden. Currently, only certain minorities approve of termination or withholding such medical treatment from the nonterminally ill.

The controversy can be illustrated by the case of a three-year-old boy who sustained severe brain damage after falling into a lake while playing. He never regained consciousness. During the last two months of his life, he received hydration but not nutrition. The doctors and the parents agreed that, given his poor prognosis, this was appropriate. To continue providing nutrition would be pointless: it would only prolong a process whose inevitable result was the death of the boy. The case was widely discussed in the press and also in some ethics committees, which, by the way, reached different conclusions.

The problem of premature birth has also been discussed recently in this context. Previously, a threshold of 1,500 grams birth weight was considered the minimum necessary for a premature infant to be saved. Technology has lowered this threshold to almost 700 grams. But since some of these children sustain severe brain damage, and given that resources are limited, the question has been raised as to what efforts are economically and ethically justifiable in order to save these premature infants.

The debate in Sweden about brain death ought to be sharply separated from the discussion about euthanasia. Even though the distinction between active and passive euthanasia is unclear and problematic (conceptually and morally, as well as psychologically), most people in Sweden probably recognize that passive euthanasia is practiced from time to time, and are inclined to accept it. A small minority have publicly supported active euthanasia. Their organization is trying to change peoples' attitudes, help with advice, and legalize euthanasia. Others have mixed feelings about this proposal. The resistance has been particularly strong from the organizations of the handicapped. They fear that a right to get help to die may slowly and imperceptibly be converted into a duty to die, in case of an economic crisis.

Prospects for the Future:

Allocation of Scarce Resources

What will happen next? Interest in biomedical ethics is clearly increasing in Sweden. In the foreseeable future, we may expect a debate over priorities; the scarcity of resources may force hospitals to introduce explicit age limits for certain treatments. Heart (coronary) operations are not performed on patients over seventy years of age in Stockholm, and other age limits are already in operation. Wehn Radiumhemmet--a special clinic in Stockholm (Karolinska Sjukhuset) for treatment and care of cancer patients--announced in the middle of March 1988, that treatment for some forms of cancer would only be given to patients below a certain age, this caused great controversy.

This is a difficult and delicate question, and praxis may vary. To what extent is there room for individual considerations? To what extent are age limits combined with, or based on, medical diagnoses? To what extent do alternative and equally effective treatments exist?

Public debate on age-limited treatment varies substantially. Both the prime minister and the minister of health forcefully spoke out against the view that not everyone should be given optimal treatment, while others have argued that age limits are a poor criterion since seventy-year-old people can vary greatly in physical and psychological health. Still others assert that it has been, and always will be, necessary to set priorities, as long as economic and personal resources are limited.

The allocation of scarce resources is also becoming an issue for the September elections in Sweden, as some debate has concerned the extent to which the general public would be willing to accept increased taxes to finance more resources for the health care system.


[1] For an extensive summary of this report in English, see The Swedish Ministry of Health and Social Affairs, The Concept of Death, Summary (Stockholm, 1984).

Goran Hermeren is professor of philosophy at Lund University, Lund, Sweden and chairman of the ethics committee of the Research Council of the Humanities and Social Sciences in Sweden.
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Title Annotation:Special Supplement: International Perspectives on Biomedical Ethics
Author:Hermeren, Goran
Publication:The Hastings Center Report
Date:Aug 1, 1988
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