[Euthanasia in an advanced state of dementia: a verdict and its reception in the medical world]. / Euthanasie bij gevorderde dementie.

The most controversial issue in the Dutch euthanasia practice concerns the performance of euthanasia in a case of a patient in an advanced state of dementia on the basis of a request that is laid down in an advance directive. This is particularly controversial when such a patient, although lacking decisional capacity on the matter, shows signs of a wish to live. In two important verdicts of April 21 2020 the Dutch Supreme Court has ruled that a request that has been made competently cannot be revoked incompetently. In this comment I consider two recent documents from Dutch professional organisations that are contrary to these decisions, in particular a guideline stating that on a proper understanding of decisional capacity the expression of a wish to live of a demented person, however inarticulate, should always be considered to be made competently.

Counting Cases of Termination of Life without Request: New Dances with Data.

This paper explores the common argument proposed by opponents of the legalization of euthanasia that permitting ending a patient's life at their request will lead to the eventual legalization of terminating life without request. The author's examination of data does not support the conclusion that a causal connection exists between legalizing ending of life on request and an increase in the number of cases without request.

When are you dead enough to be a donor? Can any feasible protocol for the determination of death on circulatory criteria respect the dead donor rule?

The basic question concerning the compatibility of donation after circulatory death (DCD) protocols with the dead donor rule is whether such protocols can guarantee that the loss of relevant biological functions is truly irreversible. Which functions are the relevant ones? I argue that the answer to this question can be derived neither from a proper understanding of the meaning of the term "death" nor from a proper understanding of the nature of death as a biological phenomenon. The concept of death can be made fully determinate only by stipulation. I propose to focus on the irreversible loss of the capacity for consciousness and the capacity for spontaneous breathing. Having accepted that proposal, the meaning of "irreversibility" need not be twisted in order to claim that DCD protocols can guarantee that the loss of these functions is irreversible. And this guarantee does not mean that reversing that loss is either conceptually impossible or known to be impossible with absolute certainty.

Respect for autonomy in systems of postmortem organ procurement: A comment.

In 2015 Robert Veatch published the second edition of his Transplantation ethics, this time together with Lainie Ross. The chapters on postmortem organ procurement distinguish between 'giving' and 'taking' systems, and argue that 'taking' systems may promise a greater yield of organs for transplantation, but inevitably violate a requirement of respect for the deceased's autonomy. That argument has been very influential, and is also representative of a way of thinking that is widespread in the literature and in public debate. In this paper I contend that it is conceptually flawed in a number of important respects. These concern the understanding of both the concept of 'consent' and the requirement of respect for autonomy, the role of the relatives in any procurement system, and the factors that actually determine the extent to which a system respects autonomy, under any interpretation of that requirement.

Relieving one's relatives from the burdens of care.

It has been proposed that an old and ill person may have a 'duty to die', i.e. to refuse life-saving treatment or to end her own life, when she is dependent on the care of intimates and the burdens of care are becoming too heavy for them. In this paper I argue for three contentions: (1) You cannot have a strict duty to die, correlating to a claim-right of your relatives, because if they reach the point at which the burdens of care are larger than you can reasonably expect them to take, the natural conclusion is that their duty ends. (2) They may be prepared, however, to go on caring for you beyond that point. In that case your responsibility for their wellbeing may require you to refuse this care, even if this results in a situation for you in which death will be preferable to continued life. (3) If this is the correct understanding of your responsibilities, the objection that in the context of family life the burdens of care attached to one family member's valued existence can never be 'too heavy', fails. It postulates unlimited concern on one side and a total lack of concern on the other.

Two kinds of physician-assisted death.

I argue that the concept 'physician-assisted suicide' covers two procedures that should be distinguished: giving someone access to humane means to end his own life, and taking co-responsibility for the safe and effective execution of that plan. In the first section I explain the distinction, in the following sections I show why it is important. To begin with I argue that we should expect the laws that permit these two kinds of 'assistance' to be different in their justificatory structure. Laws that permit giving access only presuppose that the right to self-determination implies a right to suicide, but laws that permit doctors to take co-responsibility may have to appeal to a principle of mercy or beneficence. Actually this difference in justificatory structure can to some extent be found in existing regulatory systems, though far from consistently. Finally I argue that if one recognizes a right to suicide, as Oregon and other American states implicitly do, and as the European Court of Human Rights has recently done explicitly, one is committed to permit the first kind of 'assistance' under some conditions.

Two Kinds of Suicide.

In suicidology, the common view is that 'rational' suicides occur only rarely, because the competence of people who want to end their lives is compromised by mental illness. In the Netherlands and Flanders, however, patients' requests for euthanasia or assistance in suicide are granted in 5300 and 1400 cases a year respectively, and in all these cases at least two doctors have confirmed the patient's competence. The combination of these two findings is puzzling. In other countries one would expect at least some of these people to end their own lives. The article argues that we can distinguish between two types of suicide with clustering characteristics. In cases of the first type, the agent doesn't carefully plan his action, doesn't communicate his plans to relatives or others, and uses violent means. In such cases it is reasonable to presume lack of competence. The other type has the opposite characteristics. The most plausible explanation of our problem is that suicides of the second kind are invisible to suicidology, because they tend not to be registered as suicides at all.

Do we need a threshold conception of competence?

On the standard view we assess a person's competence by considering her relevant abilities without reference to the actual decision she is about to make. If she is deemed to satisfy certain threshold conditions of competence, it is still an open question whether her decision could ever be overruled on account of its harmful consequences for her ('hard paternalism'). In practice, however, one normally uses a variable, risk dependent conception of competence, which really means that in considering whether or not to respect a person's decision-making authority we weigh her decision on several relevant dimensions at the same time: its harmful consequences, its importance in terms of the person's own relevant values, the infringement of her autonomy involved in overruling it, and her decision-making abilities. I argue that we should openly recognize the multi-dimensional nature of this judgment. This implies rejecting both the threshold conception of competence and the categorical distinction between hard and soft paternalism.

Continuous deep sedation and homicide: an unsolved problem in law and professional morality.

When a severely suffering dying patient is deeply sedated, and this sedated condition is meant to continue until his death, the doctor involved often decides to abstain from artificially administering fluids. For this dual procedure almost all guidelines require that the patient should not have a life expectancy beyond a stipulated maximum of days (4-14). The reason obviously is that in case of a longer life-expectancy the patient may die from dehydration rather than from his lethal illness. But no guideline tells us how we should describe the dual procedure in case of a longer life-expectancy. Many arguments have been advanced why we should not consider it to be a form of homicide, that is, ending the life of the patient (with or without his request). I argue that none of these arguments, taken separately or jointly, is persuasive. When a commission, even one that is not itself life-shortening, foreseeably renders a person unable to undo the life-shortening effects of another, simultaneous omission, the commission and the omission together should be acknowledged to kill her. I discuss the legal and ethical implications of this conclusion.

The facilitating role of chemotherapy in the palliative phase of cancer: qualitative interviews with advanced cancer patients.

OBJECTIVE: To explore the extent to which patients have a directing role in decisions about chemotherapy in the palliative phase of cancer and (want to) anticipate on the last stage of life. DESIGN: Qualitative interview study. METHODS: In depth-interviews with 15 patients with advanced colorectal or breast cancer at the medical oncology department in a Dutch teaching hospital; interviews were analysed following the principles of thematic content-analysis. RESULTS: All patients reported to know that the chemotherapy they received was with palliative intent. Most of them did not express the wish for information about (other) treatment options and put great trust in their physicians' treatment advice. The more patients were aware of the severity of their disease, the more they seemed to 'live their life' in the present and enjoy things besides having cancer. Such living in the present seemed to be facilitated by the use of chemotherapy. Patients often considered the 'chemotherapy-free period' more stressful than periods when receiving chemotherapy despite their generally improved physical condition. Chemotherapy (regardless of side-effects) seemed to shift patients' attention away from the approaching last stage of life. Interestingly, although patients often discussed advance care planning, they were reluctant to bring on end-of-life issues that bothered them at that specific moment. Expressing real interest in people 'as a person' was considered an important element of appropriate care. CONCLUSIONS: Fearing their approaching death, patients deliberately focus on living in the present. Active (chemotherapy) treatment facilitates this focus, regardless of the perceived side-effects. However, if anxiety for what lies ahead is the underlying reason for treatment, efforts should be made in assisting patients to find other ways to cope with this fear. Simultaneously, such an approach may reduce the use of burdensome and sometimes costly treatment in the last stage of life.

The role of the relatives in opt-in systems of postmortal organ procurement.

In almost all opt-in systems of postmortal organ procurement, if the deceased has not made a decision about donation, his relatives will be asked to make it. Can this decision power be justified? I consider three possible justifications. (1) We could presume the deceased to have delegated this power to his relatives. (2) It could be argued that, if the deceased has not made a decision, a proxy decision has to be made in his best interests. (3) The relatives could have a standing of their own because they are singled out from the parties whose interests are being affected by the decision by the special relation they had to the deceased. None of these arguments turns out to be convincing.

In the best interests of the deceased: a possible justification for organ removal without consent?

Opt-out systems of postmortem organ procurement are often supposed to be justifiable by presumed consent, but this justification turns out to depend on a mistaken mental state conception of consent. A promising alternative justification appeals to the analogical situation that occurs when an emergency decision has to be made about medical treatment for a patient who is unable to give or withhold his consent. In such cases, the decision should be made in the best interests of the patient. The analogous suggestion to be considered, then, is, if the potential donor has not registered either his willingness or his refusal to donate, the probabilities that he would or would not have preferred the removal of his organs need to be weighed. And in some actual cases the probability of the first alternative may be greater. This article considers whether the analogy to which this argument appeals is cogent, and concludes that there are important differences between the emergency and the organ removal cases, both as regards the nature of the interests involved and the nature of the right not to be treated without one's consent. Rather, if opt-out systems are to be justified, the needs of patients with organ failure and/or the possibility of tacit consent should be considered.

Tacitly consenting to donate one's organs.

The common objection to opt-out systems of postmortal organ procurement is that they allow removal of a deceased person's organs without their actual consent. However, under certain conditions it is possible for 'silence'--failure to register any objection--conventionally and/or legally to count as genuine consent. Prominent conditions are that the consenter should be fully informed about the meaning of his or her silence and that the costs of registering dissent should be insignificant. This paper explicates this thesis and discusses some possible objections to it: (1) it cannot possibly be guaranteed that each citizen is aware of the meaning of silence; and (2) the system is slightly manipulative because it exploits a common defect in autonomous decision-making.

Understanding provision of chemotherapy to patients with end stage cancer: qualitative interview study.

OBJECTIVE: To examine health professionals' experiences of and attitudes towards the provision of chemotherapy to patients with end stage cancer. DESIGN: Purposive, qualitative design based on in-depth interviews. Setting Oncology departments at university hospitals and general hospitals in the Netherlands. PARTICIPANTS: 14 physicians and 13 nurses who cared for patients with metastatic cancer. RESULTS: Physicians and nurses reported trying to inform patients fully about their poor prognosis and treatment options. They would carefully consider the (side) effects of chemotherapy and sometimes doubted whether further treatment would contribute to patients' quality of life. Both groups considered the patients' wellbeing to be important, and physicians seemed inclined to try to preserve this by offering further chemotherapy, often followed by the patient. Nurses were more often inclined to express their doubts about further treatment, preferring to allow patients to make the best use of the time that is left. When confronted with a treatment dilemma and a patient's wish for treatment, physicians preferred to make compromises, such as by "trying out one dose." Discussing death or dying with patients while at the same time administering chemotherapy was considered contradictory as this could diminish the patients' hope. CONCLUSIONS: The trend to greater use of chemotherapy at the end of life could be explained by patients' and physicians' mutually reinforcing attitudes of "not giving up" and by physicians' broad interpretation of patients' quality of life, in which taking away patients' hope by withholding treatment is considered harmful. To rebalance the ratio of quantity of life to quality of life, input from other health professionals, notably nurses, may be necessary.

Priority to registered donors on the waiting list for postmortal organs? A critical look at the objections.

It has often been proposed to restrict access to postmortal organs to registered donors, or at least to give them priority on the waiting list. Such proposals are motivated by considerations of fairness: everyone benefits from the existence of a pool of available organs and of an organised system of distributing them and it is unfair that people who are prepared to contribute to this public good are duped by people who are not. This paper spells out this rationale and goes on to discuss the main principled objections that have been brought forward to such proposals. The most fundamental objection is that healthcare resources should be allocated in accordance with need, not with merit. The reply to this objection is that the principle of allocation according to need only holds in cases in which the provision of such resources and the fair distribution of the burdens of contribution are independently secured, as they are in an obligatory insurance system.

Understanding provision of chemotherapy to patients with end stage cancer: qualitative interview study.

OBJECTIVE: To examine health professionals' experiences of and attitudes towards the provision of chemotherapy to patients with end stage cancer. DESIGN: Purposive, qualitative design based on in-depth interviews. SETTING: Oncology departments at university hospitals and general hospitals in the Netherlands. PARTICIPANTS: 14 physicians and 13 nurses who cared for patients with metastatic cancer. RESULTS: Physicians and nurses reported trying to inform patients fully about their poor prognosis and treatment options. They would carefully consider the (side) effects of chemotherapy and sometimes doubted whether further treatment would contribute to patients' quality of life. Both groups considered the patients' wellbeing to be important, and physicians seemed inclined to try to preserve this by offering further chemotherapy, often followed by the patient. Nurses were more often inclined to express their doubts about further treatment, preferring to allow patients to make the best use of the time that is left. When confronted with a treatment dilemma and a patient's wish for treatment, physicians preferred to make compromises, such as by "trying out one dose." Discussing death or dying with patients while at the same time administering chemotherapy was considered contradictory as this could diminish the patients' hope. CONCLUSIONS: The trend to greater use of chemotherapy at the end of life could be explained by patients' and physicians' mutually reinforcing attitudes of "not giving up" and by physicians' broad interpretation of patients' quality of life, in which taking away patients' hope by withholding treatment is considered harmful. To rebalance the ratio of quantity of life to quality of life, input from other health professionals, notably nurses, may be necessary.

Trading with the waiting-list: the justice of living donor list exchange.

In a Living Donor List Exchange program, the donor makes his kidney available for allocation to patients on the postmortal waiting-list and receives in exchange a postmortal kidney, usually an O-kidney, to be given to the recipient he favours. The program can be a solution for a candidate donor who is unable to donate directly or to participate in a paired kidney exchange because of blood group incompatibility or a positive cross-match. Each donation within an LDLE program makes an additional organ available for transplantation. But because most of the pairs making use of the program will be A/O incompatible, it will also tend to increase the waiting time for patients with blood group O, who already have the longest waiting time. It has therefore been objected that the program is materially unjust, because it further disadvantages the least advantaged. This objection appeals to John Rawls' difference principle. However, the context for which Rawls proposed that difference principle, is significantly different from the present one. Applying the principle here amounts to a lop-sided trade-off between considerations of need and considerations of overall utility. Considerations of formal justice, however, may lead to a stronger objection to LDLE programs. Such a program means that one O-patient on the waiting list is exempted from the application of the general criteria used in constructing the list because he has a special bargaining advantage. This objection is spelled out and weighed against the obvious attraction of LDLE in a situation of (extreme) organ scarcity.