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Psychiatrists oppose assisted dying bill

The Royal College of Psychiatrists has said that it is deeply worried about the possible unintended effects of the Assisted Dying for the Terminally Ill Bill if it were to be enacted although it recognises that the proposed Bill has been conceived with compassionate intent to help individuals who experience intolerable suffering under very specific circumstances.

OnMedica Editorial

Tuesday, 25 April 2006

In May of this year, a Bill to legalise physician-assisted suicide (PAS) in England and Wales will receive its second reading in the House of Lords. In 2005 Lord Joffe revised his Assisted Dying for the Terminally Ill Bill to focus on PAS rather than on euthanasia and PAS.

The Joffe Bill would "enable an adult who has capacity and who is suffering unbearably as a result of a terminal illness to receive medical assistance to die at his own considered and persistent request" (House of Lords, 2005). The doctor who agrees to participate in PAS is responsible for determining the following: the patient has a terminal illness that will cause death within six months, the request is voluntary (uncoerced), the patient has mental capacity, and his or her 'unbearable suffering' (subjectively defined by the patient and either mental or physical) arises from the terminal illness, regardless of whether suffering can be relieved or treated.

PAS is when a doctor prescribes a patient a lethal dose of medication for self-administration with the specific goal of enabling the patient to commit suicide. In Oregon and the Netherlands, doctors legally assist suicide with an overdose of barbiturates. PAS is ethically and legally distinct both from prescribing medication for pain relief with the understanding that death could occur earlier as a secondary effect and from withdrawing or withholding treatment such as antibiotics or intravenous fluids. A recent survey found extremely low rates of illegally practised PAS and euthanasia in the UK at this time (Seale, 2006).

In response to the revised bill, the Royal College of Psychiatrists said it recognises that the proposed Bill has been conceived with compassionate intent to help individuals who experience intolerable suffering under very specific circumstances. However, the Royal College of Psychiatrists is deeply worried about the possible unintended effects of the Assisted Dying for the Terminally Ill Bill if it were to be enacted. It considers that psychiatrists have contributions to offer in the discussion the Bill has provoked about end of life care.

The main issues are as follows:

1.1 Role of doctors, including psychiatrists

  • How different is doctor-assisted dying compared with withdrawing life-prolonging treatment?
  • Is it ethical to intentionally cause death?
  • Is it compatible for a psychiatrist to work on preventing suicide, on the one hand, and take part in proceedings that may lead to doctor-assisted dying on the other?
  • How should we help distressed people work towards decisions about their end of life care?

1.2 Decision-making capacity

  • How reliable is the assessment of capacity?
  • What are the factors that affect capacity?

1.3 Physical disability often coexists with mental disability (co morbidity)

  • Does this mean that psychiatric issues should always be considered in end of life decision making? Should psychiatrists be members of palliative care teams?

1.4 Depression and suicidal ideation in terminal illness

  • How good are physicians at diagnosing depression? A failure to diagnose depression could put people requesting PAS at risk?
  • Should treatment of depression always be offered to patients requesting doctor-assisted suicide?

1.5 Further effects of legislation

  • Will it be more harmful to deny those patients that want doctor-assisted suicide, or to expose vulnerable patients to the risk of wrongful determination of their mental capacity, and/or coercion?
  • Would this legislation expose vulnerable patients to the risk that their desire for suicide may be taken at face value rather than treated?
  • Would it expose all psychiatric patients to a culture where some patients are helped to die?

The Royal College of Psychiatrists says that a long standing principle of medical and psychiatric work has been that all patients are intrinsically valuable, whatever their disorder, and that their quality of life should be strived for and maximised, even for those most disabled.

Doctors work hard to heal illness and to promote health and well-being. Where it is not possible to cure illness, doctors and others have developed techniques to relieve pain and suffering. Where death is imminent and unavoidable, doctors should not "strive officiously" to keep someone alive. Nor should they give burdensome treatments.

For psychiatrists, their primary task is to assist patients and their families to understand their health experience and expectations and to give advice about treatment and other actions they can take to improve outcomes. Patients who despair need to be supported and reassured about their value, not have their worst fears confirmed and arrangements made for their death. People who are dying are aware of the burden on others who have to care for them, sometimes at considerable cost. The underlying motivations of doctors and carers are often unconscious.

The college says that it considers that assisting suicide is incompatible with our role of trying to prevent it by effective treatment. As doctors who specialise in the management of suicide, psychiatrists are well aware that the request to die is a communication that has many different interpretations. It may be that in requesting to die, a patient is looking to be given a reason to live.(Muskin, 1998) Even if they are not; we would still want to offer care, support and effective relief of distress.

The doctor-patient relationship is built upon trust. Public trust has been eroded by the Bristol Heart, Alder Hey and Shipman enquiries. Any move towards PAS may undermine this trust still further. The experience of colleagues in palliative care is that since Dr Shipman was convicted, many patients have become more concerned about taking opiates.

It is concerned that if PAS were enacted, some patients will be more reluctant to accept appropriate pain relief. Arguably, the capacity of health services to treat discomfort and distress could be reduced.

The Bill states that patients must have mental capacity before a request for PAS can be considered. Psychiatrists have special training in the examination of mental states. Psychiatrists are also trained to consider the best interests of those whose liberty has been restricted, and have experience in helping distressed people work towards decisions in matters which are in their command. The implications of this are considered below.

Recent case law and now the Mental Capacity Act (MCA), 2005 for England and Wales have established the legal criteria to be met if a person is to be considered to lack capacity in relation to 'the matter in question'. There is a requirement that 'at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or disturbance in the functioning of, the brain or mind'.. Mental capacity (better referred to as decision-making capacity) must then be functionally assessed as it is decision and time specific.

In the Assisted Dying Bill the person must have the capacity to make the decision in question. In this context the decision in question is whether to ask for and, if offered, accept a medical intervention the consequence of which is death. Given the criteria set out for decision-making capacity in the MCA the person concerned would need to understand and balance knowledge about their existing medical condition and any potential treatments, and the likely benefits of further palliative care, and be able to communicate his/her choice being fully aware that the consequence, if the doctor agreed to carry out the procedure, would be his/her death.

From April 2007 the MCA provides the legal framework in England and Wales for substitute decision-making with respect to healthcare treatment when a person lacks the capacity to make relevant treatment decisions for him/herself. Any action will have to respect valid Lasting Powers of Attorney and advanced decisions to refuse treatment, and in the absence of guidance from a LPA or advanced refusal, such action must be in the patient's best interests. The MCA is very specific in stating that under 'best interests', with respect to life sustaining treatment, such action must NOT be motivated by a desire to bring about death. Thus, vulnerable people with enduring incapacity to make this particular decision would be protected from physician assisted suicide as capacity is required under the Assisted Dying Bill and such action would not be acceptable under the MCA.

Given the above, the determination that a person has the capacity to make this particular decision is crucially important as it is a necessary and pivotal factor in deciding whether, under the proposed Assisted Dying Bill, physician assisted suicide can be considered. The responsibility for this assessment would rest with the physician who would authorise the assisted suicide. He/she may seek advice from others. We set out the issues with respect to this assessment. First, in clinical practice we are at a stage of transition and at present few doctors understand and are knowledgeable about capacity assessments (Suto et al, 2002), and many would fail to recognise that a person lacked capacity (Raymont et al, 2004). Such knowledge and training would be essential.

Secondly, where properly informed and structured assessments of decision-making capacity have been undertaken in research projects involving people at risk of incapacity (e.g., those with serious mental illness, physical illnesses, dementia, or learning disabilities) in, for example, A & E departments, general and psychiatric hospitals, and community settings, such assessments are reliable (UK references include Wong et al, 2000, Bellhouse et al, 2003a & b; Cairns et al, 2005; Raymont et al, 2004; Suto et al, 2005; Jacobs et al, 2005).

Thirdly, the decision-making capacity of those living in hospices or receiving palliative care has not been researched. As outlined elsewhere in this paper a combination of factors (e.g., depression, pain, despair), some difficult to detect, are very likely to be important in influencing a person's thinking. Particular skill will be required in the assessment of capacity in this context. Fourthly, experience in settings such as A & E departments (Jacobs et al, 2005), which may be generalised to other settings, has shown that a number of factors can optimise a person's capacity, such as the way information is given, the time spent, the environment etc. In the context of this Bill the assessment of capacity must not be thought of as a brief exercise taking place at the end of the bed. Rather great attention must be paid to how the capacity of a person making the decision can be optimised. The decision required to be made does not have to be made urgently and time can and must be spent undertaking this process, particularly given the consequence that, if the doctor agrees with what the person is requesting, the action that follows will result in that person's death.

Here, and elsewhere in this paper, the role of psychiatrists in this particular context has been considered. First, it may not be apparent or obvious that a person making such a request has an 'an impairment of, or disturbance in the functioning of, the brain or mind' that might in turn affect his/her decision-making capacity. Such an impairment (e.g., depression, confusion) once detected may well be susceptible to treatment.

Secondly, whilst research indicates that properly conducted assessments can reliably establish whether a person clearly lacks capacity, the more complex issue is to appreciate the individual motivations behind particular decisions, such as to refuse life sustaining treatment or to seek physician assisted suicide, when made by those who clearly understand the issues and appear able to make a balanced judgement (i.e., have capacity). As with any such circumstances the doctor's role is to explore these psychological processes, to understand the values and other factors that impinge on this process, and to ensure that such a decision is voluntarily given.

The research of Tan et al, (2003), in the context of people with eating disorders, illustrates how these influences shape people's decisions. Such research indicates that it would be inappropriate to take apparently capacitous requests for physician assisted suicide at face value. If there is concern about the influences and motivations behind a request for assisted suicide then the action should not take place. If Parliament decides that this Bill should become law a very high standard of expertise would be required of those involved to both ensure that those requesting physician assisted suicide clearly had the capacity to make such a request and also, when people were considered to have this capacity, the nature of the psychological processes that had led them to make such a decision were properly explored.

Problems of physical and mental health often coexist. As specialists who frequently work at the interface of these problems, we are well aware of the effects of disempowerment, despair, fear of the future and fear of being a burden to others. We are also aware that people who are sick are often less able to obtain for themselves the effective treatments which they require to alleviate their disempowerment and suffering. We are also well aware of the ways in which, so often, the experience of illness is substantially different from that which is anticipated.

The college believes that psychiatric issues are of crucial importance when PAS is considered, and point out that, while clear diagnoses of severe depression or psychosis may occur in this group of people, more frequently, judgement may be coloured by mild depression, mild cognitive impairment and pressure from others. Depression is a subtle insidious condition, which hugely influences people's psychological processes. Depression frequently gains an insidious foothold in people with physical illness. Spotting this will always be challenging, and this difficulty means that PAS will put such people at risk.

In the general population, suicidal thoughts and urges are common symptoms of depression, and serious suicidal thoughts rarely arise apart from depression. (Meltzer 2002) Studies using systematic assessments in terminally ill patients have clearly shown that depression is strongly associated with the desire for a hastened death, including the wish for PAS or euthanasia. This is true for the top three diseases for which patients request PAS: Cancer, motor neuron disease and HIV/AIDS (Achille & Ogloff, 2004; Block, 2000; Block & Billings, 1994; Breitbart et al., 2000; Chochinov et al., 1995; Emanuel et al., 1996; Emanuel, Fairclough, & Emanuel, 2000; Ganzini et al., 1998; Ganzini, Silveira, & Johnston, 2002; Haverkate et al., 2000; Kelly et al., 2004; Ransom et al., 2006; Rosenfeld et al., 1999; van der Lee et al., 2005). Patients with mental illness who then develop a terminal physical disease can receive substandard treatment for psychiatric relapses after requesting PAS, partly because doctors become confused by the competing processes of PAS and psychiatric clinical care (Hamilton & Hamilton, 2005).

Once a person's depression is treated effectively most (98-99%) will subsequently change their minds about wanting to die (Hawton & Fagg, 1998). In persons suffering with painful, disabling and terminal illnesses, depression is very common. Depression, pain and desperation generally underlie suicidal thoughts, which can generally be relieved by appropriate support and by effective treatments for depression in the terminally ill, including antidepressants, anxiolytics, psychostimulants, electroconvulsive therapy and psychotherapy (Zaubler & Sullivan, 1996) and relief of pain by diamorphine often lifts depressive ideation. Requests for PAS should trigger effective treatment of depression and its causes - not actual PAS.

Many doctors do not recognise depression or know how to assess for its presence in terminally ill patients (Bowers & Boyle, 2003; Kissane & Kelly, 2000; Passik et al., 1998; Stiefel et al., 2001; Thompson et al., 2000). Even when recognized, doctors often take the view that "understandable depression" cannot be treated, does not count or is in some way not real depression. So in terminally ill patients, depression often goes untreated and in some cases PAS or euthanasia is provided anyway (Dinwiddie, 1999; Groenewoud et al., 2004; Meier et al., 2003). In addition, in requests for PAS, the influence of a psychiatric condition in making the request can be underestimated (Bannink, et al., 2000)

In terminally ill patients, depression often fluctuates with pain, as well as altering the perception of the pain and subjective views of the future. The desire to die has been found to decrease over time in terminally ill persons (Chochinov et al., 1995). Specifically, the wish for euthanasia or PAS changes over time in a large proportion of terminally ill patients, and decision instability is particularly associated with depressive symptoms (Emanuel, Fairclough, & Emanuel, 2000). Improvement in depression is generally accompanied by an increased desire for life-sustaining interventions in the elderly and the terminally ill (Fogel & Mor, 1993; Ganzini et al., 1994; Hooper et al., 1996; Rosenfeld et al., 1996). And when fears and palliative care needs are addressed, the request for an assisted death usually disappears (Hamilton & Hamilton, 2005: Hendin, 1999). Pain alleviation resulted in 85% of patients withdrawing their requests for euthanasia or PAS in a Netherlands study (van der Maas et al., 1991). As does depression and suicidality, mental capacity fluctuates, thus one assessment for PAS is insufficient.

Currently we have a well established ethical framework and this must not be threatened by a change in the law. Lord Joffe said in Parliament "we are starting off, this is a first stage." [(Lord Joffe. Hansard 16th December 2004). Given the complexities of capacity assessments, comorbidity and the potential for coercion, we agree with the view that PAS will inevitably spread to other vulnerable groups in ways not currently envisaged by this Bill. We hope that Parliament will be aware of these risks when reaching its decision.

If PAS were to be allowed under this Bill, there is a possibility of progression to include other circumstances. For example, why limit PAS just to the dying? Why limit to those with life threatening illness? Why limit to people with mental capacity? If one is trying to prevent suffering, why not allow it to be used for people with a range of psychiatric disorders, as now happens in the Netherlands and in Belgium (Naudts et al. 2006)?. We are very concerned that if this legislation were enacted it would become impossible to limit it to people with a limited life expectancy. If assisted suicide exists for physical illness, individuals with psychiatric disorders could argue with some justification that they will be discriminated against if it does not exist for them.

As physicians who work routinely with very vulnerable people, we find ourselves deeply concerned by the pressures that legalisation of PAS could impose upon our patients. We are also concerned about the specific effects on families who have lost someone through suicide (Hawton and Simkin, 2003) and their support needs.

As a consequence, the Royal Colleghe of Psychiatrists says it is deeply worried about the likely effectrs of the Assisted Dying for the Terminally Ill bill if it were to be enacted. Not only are many college memebers very concerned about the ethics of PAS in general, but they are also extremely concerned about the effect in particular on other patients of doctor-assisted suicide becoming part of the role of a psychiatrist.

If the Bill were enacted, The Royal College of Psychiatrists would strongly recommend the availability of effective concerned psychiatric physicians who will see people who have to face the problem of a potentially painful death or one in which quality of life is judged to be extremely low. The college supports the availability of high quality palliative care and recommends that such teams should have a psychiatrist available to assist, recognising the extent of co-morbid physical and mental illness at the end of life.

The college is very concerned that if this legislation were enacted, it would become impossible to restrict it to people with a limited life expectancy. It is also very concerned about the effect of physician assisted suicide on families, and suggest that support for families of identified patients may be needed for a lengthy period.

If PAS were enacted, there should be at least two independent assessments, as for other serious decisions under legislation. Since suicidality fluctuates, the assessments should first trigger expert psychiatric advice on treatment of depression, and there should be two specialist assessments, spaced, for example, at least two months apart with offers of treatment for both depression and pain, so that there is time for the suicidal ideation to abate - since the ending of life is irrevocable.


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