Euthanasia in Palliative Care Journals

Article Outline

• Abstract
• Introduction
• Methods
• Results
  • Euthanasia in Palliative Care Journals
  • Concepts of Euthanasia in the Journals
    • (Dis)agreement of the Subject
    • Means By Which Death May Be Produced
    • The Intention to Produce Death
  • Attitudes Towards Euthanasia in the Journals of Palliative Care
  • There Is No Place for Euthanasia in Palliative Care
    • Respect for Life
    • Dying Is a Part of Life
    • Euthanasia Diverts Attention Away from Good Palliative Care
    • Non-Necessity Argument
    • Slippery Slope Argument
    • Culture of Death
  • There Is a Place for Euthanasia in Palliative Care
    • Autonomy of the Patient
    • Compassion
    • The Fallibility of Palliative Care
• Discussion
• Acknowledgements
• References
• Copyright

Abstract 

With the growth of palliative care services, interest in moral issues also seems to be growing. The controversial issue of euthanasia significantly provokes moral reflection on the care for dying patients. This article presents an analysis of the moral issue of euthanasia as it is discussed by the palliative care community in the professional journals of palliative care. Initially, the analysis will focus on describing the characteristics of the publications about euthanasia and the attitudes expressed in the articles towards this practice. Second, attention will be paid to the description of the uses of the term euthanasia in the various articles and also how frequently such uses occur. Third, the various arguments in support for or against a place for euthanasia in palliative care will be discussed.

Keywords:  Ethics, morals, palliative care, euthanasia, journals of palliative care, qualitative and quantitative analysis

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Introduction 

Palliative care has become the focus of interest in many countries. Since the 1980s, palliative care interventions have been more and more integrated into the formal health care system, in a process of professionalization and specialization. Starting with the hospice movement in the late 1960s, palliative care intended to develop new ways of caring for terminally ill patients, emphasizing moral values and virtues such as compassion, quality of life, and hope. Palliative care has been associated with specific moral issues at the same time that end-of-life issues have been on the agenda of moral debate in bioethics.¹, ²

In order to identify the moral problems and issues in the practical context of palliative care, several research strategies can be used—for example, participatory fieldwork, interviews and questionnaires. In a previous study, we examined the professional journals in the area of palliative care.³ Our objective was to identify which moral issues have been articulated by the palliative care community itself within the scientific literature. One of the findings of this study was that substantial attention in the professional palliative care literature was paid to spiritual and pastoral care, as well as to issues of meaning of life and quality of life. The largest number of articles by far, however, was focused on the topic of euthanasia (16.3%).

The aim of this contribution is to present a qualitative analysis of the euthanasia debate within the palliative care community, which is reflected in the professional journals in the area of palliative care. Initially, the analysis will focus on describing the characteristics of the publications about euthanasia and the attitude expressed in the articles towards this practice. Second, attention will be paid to the description of the uses of the term euthanasia in the various articles and also how frequently such uses occur. Third, the various arguments in support of or against a place for euthanasia in palliative care will be identified and described.

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Methods 

The objective of a previous study³ was to identify which moral issues have been articulated in the journals of palliative care. Four methodological steps could be distinguished.

First, identification of the relevant journals (using databases Medline, Cinahl, and Picarta as well as the mission statement of each journal); we focused on English language publications only. With these criteria, 12 professional journals in palliative care, since the first journal in 1984, could be distinguished. There were: American Journal of Hospice & Palliative Care (AJHPC); Journal of Palliative Care (JPC); The Hospice Journal (HJ); Journal of Pain and Symptom Management (JPSM); Palliative Medicine (PM); European Journal of Cancer Care (EJCC); Progress in Palliative Care (PPC); European Journal of Palliative Care (EJPC); International Journal of Palliative Nursing (IJPN); European Journal of Pain (EJP); Topics in Palliative Care (TPC); Journal of Palliative Medicine (JPM).

The second step was to select the “ethics articles” published in these journals. Three criteria were used to classify an article as an “ethics article”:

The total number of published articles was almost 4000, of which approximately 500 (12%) were “ethics articles.”

The third step was to identify the professional background of the authors. Because in many cases the profession of the author(s) was not provided in the publication, we focused on the professional background, namely, the professional setting in which the author is working (as provided in the address of the authors).

Finally, the primary moral topic of each “ethics article” was identified. These topics were identified on the basis of the title or key words, as well as the main theme running through the publication. The label was selected from the list of moral concepts provided in the Bioethics Thesaurus of the Kennedy Institute of Ethics. With these criteria, a classification of 23 different moral issues discussed in the articles was made. The largest number of articles by far was focused on the topic of euthanasia.

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Results 

Euthanasia in Palliative Care Journals 

In the period 1984–1999, a total number of 75 publications was focused explicitly on the moral topic of euthanasia (including the related issue of physician-assisted suicide). Table 1 presents the quantitative data concerning publications in the 12 palliative care journals. Table 2 shows a qualitative assessment of the attitude towards euthanasia in each article (favorable/ neutral/unfavorable) for each journal. Table 3 shows the same assessment, but ranked according to year of publication.

Table 1. Number of Euthanasia Publications Per Journal Per Year

Table 2. Attitude Towards Euthanasia Per Journal Article

Table 3. Attitude Towards Euthanasia Per Year

Table 1 shows that while the first journal of palliative care appeared in 1984, it took some years before the first article about euthanasia was published. In 1987, the American Journal of Hospice & Palliative Care was the first to publish 2 articles about this topic. One of the similarities among the 12 journals is that they all needed an average of more than 3 years after their first issue before euthanasia was considered a theme worth publishing. From 1987 onwards, interest in euthanasia, as indicated in publications, has been continuous; every year the theme of euthanasia has been part of the “ethics articles” in some of the journals and, as Table 1 shows, through the years the proportional attention for euthanasia has been growing.

This growth in publications about euthanasia can be explained largely by an increasing number of journals in the last decade. Consequently, the number of different journals publishing about euthanasia is growing.

Furthermore, supplements or special thematic issues can explain the increasing number of euthanasia articles in the journals. For example, Journal of Palliative Care published a special issue twice (in 1988 and in 1994), on Controversies in Palliative Care and on Ethics in Palliative Care, part I and II respectively, explaining the high rate of euthanasia articles in 1988 and 1994, as well as the total score of such articles in Journal of Palliative Care. A growth in publications about euthanasia might possibly be explained also by the following: publishing about euthanasia can be an opportunity for the journals of palliative care to articulate palliative or hospice care as an alternative to euthanasia, instead of paying positive attention to euthanasia. We will examine this hypothesis in a later section. Finally, the active debate about legalizing euthanasia and physician-assisted suicide in the United States, Canada, Australia, and The Netherlands contribute to the growth in publications on euthanasia as well.⁴, ⁵, ⁶, ⁷, ⁸, ⁹

Table 1 also shows that 2 of 12 palliative care journals have not (yet) published about euthanasia (and have seldom or never published about ethics in general). Second, a shift in journals publishing about euthanasia can be observed: those having published most on euthanasia in the period 1994–1997 (AJHPC, JPC, HJ, and EJPC) have hardly any publications about euthanasia in 1998 and 1999, while this type of publications are taken over by new journals. An explanation for this shift might be found in Table 3.

Table 2 presents the assessment of the contents of the publications. Of the 75 publications about euthanasia, 12 articles demonstrate a favorable attitude towards euthanasia, and 28 an unfavorable attitude. The majority of the articles, 35, has a neutral position. According to our criteria, the articles with a neutral position towards euthanasia describe the palliative care and euthanasia debate in a certain country or express a neutral/blank stance towards (legalizing) euthanasia. We are aware of the fact that there is, in these articles with a neutral stance, a possibility of pretending neutrality in the hope to gain greater credibility. However, we cannot take into account this political position. The majority of the euthanasia articles in the Journal of Pain and Symptom Management is descriptive or neutral towards euthanasia, for example; this journal is one of the few journals which frequently pays attention to case descriptions. Table 2 furthermore shows that the attitude towards euthanasia is not equal in the journals. The Journal of Palliative Care is, in comparison with other journals, the medium with most articles for as well as against euthanasia. This is most probably related to the fact that this journal has published most articles about euthanasia. The Hospice Journal has not published about euthanasia frequently. The only 3 articles about this theme were very outspoken against the legalization of euthanasia. This is not surprising, as The Hospice Journal is a journal which focuses specifically on the physical, psychosocial, and pastoral care of the dying.

Table 3 shows the attitude expressed in the articles towards (legalizing) euthanasia per year. Over the years, the palliative care journals show an increase in publishing against euthanasia. A striking point is that more than half of the articles with a plea against euthanasia appeared in the period 1994–1997. It is beyond dispute that the social context in which the articles were written should be taken into account while looking for an explanation for this observation. However, it would be going too far to pay explicit attention to the different social contexts in the scope of this article.⁴, ⁵, ⁶, ⁷, ⁸, ⁹, ¹⁰

In the years 1998 and 1999, not one article in the journals of palliative care expressed a positive or negative attitude regarding euthanasia. In other words, no attention was paid during this period to the question of whether euthanasia should or should not be legalized. On the contrary, in the course of the 1990s, a growth in descriptive articles or articles with a neutral view towards euthanasia can be observed; the materials are provided to the readership to decide whether or not to take a positive or negative stand towards euthanasia (for example in JPSM and EJPC).

Table 1 reveals a shift in journals publishing about euthanasia. It is surprising that the journals responsible for all publications in the period 1994–1997 (AJHPC, JPC, HJ, and EJPC) that argued against euthanasia have hardly published on this topic in recent years. These journals may have paid attention to this theme in order to articulate palliative or hospice care as an alternative to euthanasia; in other words, the topic of euthanasia might primarily have been addressed as a contrast to the identity of palliative care. Since 1997, the journals of palliative care contain a higher quantity of ethics publications about pastoral care, spirituality, and meaning-of-life issues than publications about euthanasia. This might be explained by the fact that palliative care is no longer defined in contrast with euthanasia but is articulated in the journals as a unique independent philosophy of care, aimed to fulfill the pastoral, psychological, and spiritual needs of the dying.

Concepts of Euthanasia in the Journals 

The notion of euthanasia in the articles examined is not a uniform one. Terminological differences exist with regard to the following items: the consent or agreement of the subject involved in causing his/her death, the means to produce death, and the intention of the treating physician.

In the publications, a distinction is made between deliberately producing the death of a person with his or her agreement (voluntary euthanasia) versus without his or her agreement (imposed euthanasia). The majority (90%) of the articles—advocates as well as opponents of euthanasia—define euthanasia from the viewpoint of individual autonomy. As a consequence, the articles in which a supportive attitude towards euthanasia is expressed defend the view that euthanasia can occur only if there is a clear wish of the person involved. Euthanasia therefore can only be voluntary. The same articles point out that producing the death of a person without his or her agreement cannot be termed euthanasia: “Because the person's own request is essential in the definition, euthanasia on the request of other persons, such as family or relatives, or on the initiative of a doctor, is excluded. This would come down to murder. Also excluded is euthanasia on incompetent persons, who have not written down their request for euthanasia.”⁹

A small number (fewer than 5%) of articles, however, stipulate at the same time that ending human life without the patient's consent can be regarded as a form of euthanasia, viz. imposed euthanasia. Two forms of imposed euthanasia are distinguished in the palliative care journals: “involuntary euthanasia is where the agreement of the subject could be obtained but is not. Nonvoluntary euthanasia is where the agreement of the subject cannot be obtained because he is unconscious or otherwise unable to express his agreement verbally or rationally.”¹¹, ¹²

Another point of discussion regarding the notion of euthanasia is the question concerning the means of death. Two forms of euthanasia are recognized in this respect: On the one hand is the situation in which the life of a person is brought to an immediate end by active intervention (e.g., lethal injection) of another person (active euthanasia); on the other is the deliberate producing of the death of a person by withholding or withdrawing the ordinary means of nutrition or treatment (passive euthanasia).¹¹ This terminological distinction between active and passive euthanasia is quite frequently used in the articles on euthanasia (24% of the articles). Some articles stress that “euthanasia, active or passive, has no place in any discussion of appropriate care for the terminally ill. […] Withholding and withdrawal of different treatments that typify palliative/hospice care has little, if anything, to do with euthanasia.”¹³

In a number of articles, passive euthanasia is not regarded as euthanasia because of the recognition of a fundamental moral difference between killing and letting someone die. It is argued that it is morally unjustified for a doctor to terminate a patient's life (to make someone die), but sometimes a doctor is justified to let someone die, for example in the case of prolonging life disproportionately. Thus, because the doctor no longer has a duty to preserve life—because human dignity also implies dying with dignity—the withholding or withdrawing of treatment cannot be classified in the same moral category as the actual ending of a life. Therefore, it cannot be regarded as (a form of) euthanasia: “Euthanasia must be distinguished from allowing the patient to die and from alleviating his pain or other symptoms. ‘Allowing a patient to die when treatment has proved incapable of reversing the course of an illness is a justifiable clinical practice that has nothing in common with euthanasia.”¹⁴, ¹⁵ This practice is in several articles called ‘mercy dying’ as opposed to (active) euthanasia which is ‘mercy killing.’

In the examined publications, attention is also paid to the question what intention is ‘needed’ for a treatment to call a practice a case of (active) euthanasia. As mentioned above, applying a treatment with the intention of terminating the life of a patient in a direct way, to produce a person's death deliberately by giving a lethal injection, is usually called (active) euthanasia.

However, the question posed in several articles is whether applying a treatment without the intention of causing death—but with death as a consequence—can be regarded as euthanasia or not. In general, treatments (medical interventions or administration of drugs) applied with the intention of alleviating the pain of a patient are not regarded as euthanasia, even where the treatment may hasten the patient's death.

In a few articles, uncertainty is expressed about making a distinction between the moral implications of a direct and an indirect intervention (between terminating a person's life or alleviating his/her suffering), as long as the consequences are the same: shortening the life of a person. However, regarding the moral implications of a treatment—to be able to call a practice a case of euthanasia—the conclusion generally has been that the intention is what counts, not the consequence.

Attitudes Towards Euthanasia in the Journals of Palliative Care 

In the publications about euthanasia, many dimensions of the issue are discussed, such as the nature of suffering and pain, the concept of hope, policies regarding good care for the dying, the concept of a good death, attitudes towards the dying, the impact of euthanasia on the relationships between healthcare professionals and patients, the attitude and role of nurses in the context of end-of-life-issues, and criteria to define ‘terminality.’ The majority of the articles, however, deals with the question of whether there is a place for euthanasia in palliative care.

The main message of most of the examined publications is that euthanasia is not an ethically legitimate act in the context of palliative care and, therefore, euthanasia should not be legalized.

There Is No Place for Euthanasia in Palliative Care 

Several arguments have been developed in the examined publications in favor of the position that euthanasia is not and must not become a part of palliative care.

The norm that it is morally wrong and ethically undesirable to actively cause the death of a person is universally acknowledged. No one has the right to kill another human being. On the basis of the moral principles of sanctity of life and respect for life, the active bringing about of a person's death is not considered as a part of good care for the dying; on the contrary, it is considered murder because there is the intention to kill.

In many of the articles, the conviction of the intrinsic—and thus worth preserving—value of human life is expressed and (legalizing) euthanasia would be an offence against this meaning of life; it would mean a loss in responsibility towards oneself and others.¹⁶

One of the main ideas of the philosophy of palliative care expressed in the articles about euthanasia is that dying is a part of life and, therefore, can have meaning. A person who chooses euthanasia ignores potential reconciliation with the last phase of life and has not accepted death, according to this philosophy. This view is particularly strong in the hospice movement: “Hospice offers a vision of living and dying which does not accord with the view that one should rationally choose an agent-caused death. Hospice holds that life is a good. It is not the only good or primary good, but it is a good. To eliminate pain and suffering are also goods for the patient because they make life better. To those who hold that one should choose the time of one's death, hospice holds out the vision of living well until death overtakes one. The philosophic stance which envisions the individual as always needing to be in control, as never being vulnerable, never a burden, and never in need of care, is, in the hospice vision, incomplete. Vulnerability, interdependence, and the need for care are, for hospice, partially constitutive of being human.”¹⁷

The concern expressed in the articles that euthanasia will divert attention away from the development of palliative care is another argument for the statement that euthanasia cannot be a component of good care for the dying. This view emphasizes that once euthanasia is legalized, other options—such as providing adequate physical, psychosocial, and pastoral care, and pain and symptom management—will be left unexplored and untouched. In other words, if euthanasia becomes part of a common practice in the care for terminally ill persons, a serious risk is involved that doctors abrogate their responsibility and resort to euthanasia.¹⁸, ¹⁹ However, in several articles, it is claimed that euthanasia must not become an easy way out or a solution to suffering, and besides, providing effective total care for the dying is often enough to make the patient willing to postpone or even reject this option.

At the heart of this argument against euthanasia lies the conviction that adequate palliative care can prevent people from requesting euthanasia. One of the main goals of palliative care is the alleviation and the control of pain. Many people working in palliative care are of the opinion that they are providing inadequate care when they have patients with unrelieved pain. Furthermore, they have the feeling that palliative care has failed when a patient expresses the wish to end his or her life. As long as effective palliative care is provided (and as long as there is still an increase in knowledge and expertise in this field of care), the discussion about legalizing euthanasia is useless and superfluous, according to this argument.¹¹ However, according to some authors, a patient's request for euthanasia has nothing to do with poor pain or symptom control; it is not because the patient is in unbearable pain but he or she rationally choose euthanasia because “the patient simply prefers death to the life they are left with.”²⁰, ²¹

The slippery slope argument states that legalizing euthanasia or permitting euthanasia to be a component of good care for terminally ill patients will definitely lead to abuse, such as involuntary euthanasia (especially of the elderly, the handicapped, and chronically ill patients) or murder. Because of the danger of abuse there is no place for euthanasia in palliative care.²², ²³

According to the culture of death argument, euthanasia should not become available just like other medical treatments, on the basis of dehumanization of culture. Acceptance of euthanasia will bring the risk that certain vulnerable populations will be killed. This cultural argument, which is closely linked with the slippery slope argument, wants to prevent a social development in which no one is protected against direct intentional killing and against euthanasia.²², ²³, ²⁴

There Is a Place for Euthanasia in Palliative Care 

Although the majority of the articles about euthanasia argue that there is no place for it in palliative care, authors who are convinced of the idea that there is a place for euthanasia in palliative care declare unanimously that euthanasia can only be an option “provided that stringent conditions be met, and provided that good care of the dying has been given.”²⁵ Indeed, there are some articles (12 of 75) that proclaim that euthanasia can be the consequence of good care for the dying on account of the following arguments.

Respect for the autonomy of the patient has taken a major place in many debates in the field of medical ethics. In the discussion about whether to legalize euthanasia or not, the principle of autonomy has become one of the most important arguments in favor of euthanasia. According to this argument, a terminally ill patient has the right to request euthanasia. He or she has the freedom to decide what will happen to his or her life and death. Consequently, if a patient's request for euthanasia is an autonomous one, the doctor should provide euthanasia according to this argument. According to authors who are in favor of euthanasia, referring to the principle of autonomy on the one hand and at the same time maintaining that euthanasia should not be legalized is a contradiction.⁹, ²⁰, ²⁶

The argument of compassion proceeds from the moral conviction that it is not humane to preserve life at all cost: “… when a patient is faced with a situation of intolerable misery and distress arising from an incurable disease, it is kinder and more compassionate to end life rather than allow them to live and continue suffering. Euthanasia is thus proposed out of compassion for the person whose life has become unbearable.”¹¹, ²⁷ In some articles, however, there is a question about whether situations of unbearable suffering occur at all in palliative care.²⁸ After all, according to the non-necessity argument mentioned above, adequate pain and symptom management makes (unbearable) suffering non-existent and prevents people from requesting euthanasia. However, most proponents of euthanasia are of the opinion that palliative care cannot always prevent the suffering of patients and they consider the powerlessness of palliative care in certain extreme conditions as an argument that euthanasia can be an ultimate consequence of good care for the dying.

Whereas most palliative care workers are convinced of the power of palliative care to relieve pain and other symptoms in an adequate way, others are of the opinion that palliative care cannot always prevent the suffering of a patient. It often does relieve suffering but not always in such a way that it becomes bearable for the patient. Because of this fallibility, some authors conclude that there can be a place for euthanasia in palliative care.²⁵ Palliative care cannot guarantee every patient a peaceful and painless death; that is why palliative treatments do not always provide the best way to die. When all other options to relieve the pain have been considered and exhausted, euthanasia is an appropriate way to die. (The discussion on the fallibility of palliative care and sedation, in other words the discussion on coming to terms with those situations in which palliative care fails to control suffering, is addressed in an article entitled, “Moral Debates in Palliative Care Journals,” by Hermsen and ten Have. This article is in preparation and can be considered as a continuation of this article on euthanasia.)

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Discussion 

In this contribution, we have analyzed the moral issue of euthanasia as discussed among the palliative care community in the professional journals of palliative care. First, we have identified quantitative data concerning the articles about euthanasia (Table 1) as well as their attitudes towards this practice Table 2, Table 3. Second, we have examined the nature and frequency of various descriptions of euthanasia in the palliative care journals. The uses of the notion of euthanasia seem consistent with the traditional distinctions that have been drawn regarding active and passive, voluntary and involuntary euthanasia, and the issue of intention. Finally, we have described the various arguments in support of or against a place for euthanasia in palliative care. The majority of the examined articles do not consider euthanasia as an ethically legitimate act in the context of palliative care.

Further analyis will be necessary to clarify the status of euthanasia in the evolution of palliative care. Is there a role for euthanasia when defining the emerging field of palliative care and, if so, how can this role be formulated? This analysis can contribute to the debate and allow discussions about euthanasia to help demarcate and define the relatively new discipline of palliative care.

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Acknowledgements 

We are grateful to the Ministry of Health, Welfare and Sport for funding the COPZ (Centre for Development of Palliative Care) Project, which sponsored this study.

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