Values clash nub of assisted dying debate – ethicist

The Oireachtas Joint Committee on Assisted Dying has heard that a clash of values is at the heart of the debate, and that real-world situations are often at odds with liberal ideals.

Dr Louise Campbell (lecturer in medical ethics, School of Medicine, University of Galway) told the committee (27 June) that there were ethical risks and losses associated with permitting or prohibiting medical assistance in dying.

“This dissensus is incapable of resolution because it is rooted in a deep conflict of values – autonomy, sanctity of life, protection of the vulnerable, relief of suffering, and the integrity of the medical profession,” she said.

Legislators must ensure balanced and principled scrutiny of the arguments, she said.

Dr Campbell continued that the purpose of regulating medical assistance in dying was first:

• To ensure fair and equitable access to the intervention by those who need it, and
• To ensure that anyone who is potentially at risk as a result of its availability is protected from harm.

Legislation and policy must be underpinned by these ethical imperatives, she said.

Eligibility criteria varied by country, sometimes significantly, Dr Campbell said.

The important question was whether adequate safeguards could ensure that legalisation did not place a disproportionate burden on, or pose undue risk to, the vulnerable, she stated.

Safeguards

Safeguards – including second medical opinions, statutory waiting periods, and reporting review and oversight mechanisms – promoted accountability and facilitate due process, Dr Campbell continued.

Informed consent, along with decision-making capacity, were key criteria in all jurisdictions, she added, though assessing capacity was complex, with knowledge gaps among clinicians.

While the liberal medical legal tradition worked on an idealised concept of a rational, independent self, real-world situations were not so neat, particularly where chronic or terminal illness, loss of function, dependence on others, or disability were at issue, Dr Campbell pointed out.

Impacts on capacity

A person’s capacity might be affected by pain, illness, anxiety or exhaustion, among other factors, she added.

“Emerging research indicates that values and emotions have a significant role to play in decision-making, although this is not reflected in our current conception of decision-making capacity,” Dr Campbell told the committee.

A person may meet the cognitive requirements for capacity, but evaluation of the options available may be distorted by emotional factors, thereby undermining the voluntary nature of the decision.

The perception of being a burden was associated with anxiety, depressive symptoms, hopelessness, and a desire for death, Dr Campbell said, and screening for co-morbid mental illness was essential.

Undue influence

Careful screening for undue influence should also be part of the process, she said.

Requests for assistance in dying might mask the existence of unmet needs, Dr Campbell continued.

Factors such as age, disability, linguistic ability, socio-economic profile and gender exacerbate vulnerability.

“If a person with a progressive, terminal illness chooses to request assisted dying to avoid suffering in a situation in which they would have chosen palliative treatment had it been available, that person is not making a real choice,” Dr Campbell pointed out.

Society has an ethical obligation to ensure that assistance in dying is a last resort after other therapeutic options have failed.

Denying access to assistance in dying because of a societal failure to make high-quality palliative care more accessible was also unethical, she added.

Legalising assisted dying also marks a significant shift in societal mores, as deliberately ending a patient’s life comes to be seen as a treatment option, transforming the landscape of health and social care at the end of life.

This shift would be embraced by some members of society – including healthcare professionals – and strenuously resisted by others, Dr Campbell pointed out.

Ethical dilemmas

Barrister Finn Keyes outlined the manner in which the courts had dealt with ethical dilemmas that arose in current end-of-life care.

It was the right of any competent adult to refuse any and all medical treatment for any reason or none, even if death might result, he said.

This flows from the constitutional guarantee of the autonomy and bodily integrity of every person.

A person who considers that they may, at a future point, lose the capacity to make such a decision may make an advance healthcare directive, now provided for under part 8 of the Assisted Decision-Making (Capacity) Act 2015, stipulating their will and preferences in relation to a future treatment decision – including a refusal of treatment that would prolong life.

However, under the current legal regime, a person cannot consent to being seriously harmed or killed.

Important legal-ethical constructs

The courts had drawn on two important legal-ethical constructs to distinguish between permissible end-of-life care that might hasten death, on one hand, and impermissible killing, on the other, Finn Keyes said.

These are the act-omission distinction, and the doctrine of double effect. As a general rule, subject to important exceptions, a person is only criminally liable in respect of positive acts, and not in respect of omissions.

The courts have consistently held that a refusal on the part of medical practitioners to continue treatment where the patient cannot obtain any practical benefit from it constitutes an “omission to struggle”, and hence not a positive act for the purpose of the statutory prohibition on assisted dying.

This placed a weighty responsibility on the medical practitioner to determine at what point life was no longer in the best interests of the patient, Keyes said.

Doctrine of double effect

The doctrine of double effect plays a central role as a distinction between consequences that are intended, and consequences that are foreseen, but not necessarily intended.

Thus, it is permissible to do an act intending a good effect, albeit in the full knowledge that it will also result in a second, bad effect.

The doctrine, which originated in the work of St Thomas Aquinas, had many uses in moral philosophy, but had played a particularly important role in end-of-life decision-making, the barrister said.

The doctrine of double effect can justify the administering of palliative care, such as pain relief, that is likely to hasten death if the primary motivating purpose of that treatment is to alleviate suffering and not to cause the death of the patient.

By contrast, a doctor who administered the same dose of pain-relieving medication with the intent of hastening death would, under the current legal regime, act impermissibly.

The nature of palliative care is that the intent is never to shorten life, but the goal is to live well, also encompassing the potential to die well.

So, the intent is never to hasten death or shorten life. The intent is only to relieve suffering.

Prohibition on euthanasia

So long as the law retained an absolute prohibition on euthanasia, the principle of double effect remained a critical and valid distinction, both for medicine and the law, Keyes explained.

Responding, Deputy Pa Daly said that he had worked as a solicitor for a number of years, and though he was not trained in screening for capacity, a client would sometimes arrive at his office, with a family member outside the door.

“Some members of the family who had rights of entitlement under the Succession Act 1965 were being completely excluded. That set alarm bells ringing straight away,” he said.

Dr Louise Campbell responded that, at the most malign end of the spectrum, there might be overt or covert pressures from family or from other interested parties.

“They may also include those in question perceiving themselves as a burden, as they see the impact their illness is having longitudinally on their family or on the people caring for them. They feel that they should not be a burden to their family any longer and that they have some responsibility."

‘Significant grey area’

“There is a range of things in between, and a significant grey area. Screening for undue influence or a lack of voluntariness is extremely complex,” she said.

This is one of the most difficult things to achieve in practice, so that nobody is assisted to die when it is not his or her own free, autonomous choice.

Patients who did not get all the information about what treatments, palliative-care services, mobile palliative-care services or even telehealth services might be available to them, therapeutically, had their decision compromised, she added.

If people felt that they did not want to live a life that they felt was at odds with values they had always embraced, such as independence, autonomy or mobility, then that would have an emotional effect on them, she pointed out.

Insufficient capacity training

Literature in the clinical-ethics domain suggests that healthcare professionals do not get enough training in the area of how to assess capacity.

Finn Keyes explained that, under the Assisted Decision-making Act, there were restrictions on people who could act as decision-making assistants, co-decision makers and decision-making representatives, such that they could not have been convicted of offences of dishonesty and could not be a financial beneficiary in the event of the person’s death.

Dr Louise Campbell commented that there had been a shift in societal mores since the legalisation of medical assistance in dying in 2002, in the Netherlands – away from being a treatment of last resort administered on purely compassionate grounds because there was no other way of relieving the person’s suffering at that person’s request, to being seen as something that somebody had a right to as part of their entitlement.

“That is a significant shift,” she said.

Medical assistance in dying had become more normalised as a treatment at end of life, Dr Campbell added.

Deputy Robert Troy said he had been struck by the difference in the palliative-care offering in one region compared with another.

Those with mental-health issues must also be protected, he said.

Surreal discussions

Finn Keyes responded that the paternalistic best-interests test by courts had changed under the Assisted Decision-Making (Capacity) Act, which now provided that an intervener would try to decide what this particular person would want, if able to express a view.

“In court cases, that can sometimes give rise to a somewhat strange and surreal discussion where we are trying to construct what people, who may never have mentioned and possibly never considered what they would want should they end up in this position, would have wanted,” he said.

A similar regime would likely apply to a person lacking capacity if the Government were to introduce some form of assisted dying, he added.

‘Enormous caution’

Advance directives raised a host of ethical and clinical questions, because the person no longer had capacity at the time of administration, Dr Campbell said.

“Enormous caution has to be exercised regarding any suspicion that somebody might lack capacity related to a request for assisted dying,” she said.

Senator Rónán Mullen asked: “Once you decide that certain lives can be taken with the permission of the State, is it possible to have safeguards?”

Dr Campbell responded: “There are always going to be errors and, in the case of new legislation, there will be teething problems.”