Why leading doctors oppose assisted suicide

 

A Private Members’ Bill seeking to permit assisted suicide will be debated in the Dáil next week. It is proposed by Socialist TD, Gino Kenny. The last time when this issue was discussed in Leinster House, three years ago, some of the strongest opposition came from the members of the medical profession and disability advocacy groups. It’s worth recalling what they said because it is still completely relevant.

The Joint Committee on Justice and Equality heard from two doctors, Regina Mc Quillan, speaking on behalf of the Irish Association of Palliative Care, and Des O’Neill, professor of Medical Gerontology at Trinity College Dublin. (Here is the final report of the Committee).

Dr Mc Quillan made five main points: “1. A change in the law would put vulnerable people at risk. 2. It is not possible to put adequate safeguards in place. 3. The drive to improve the care of people with life-limiting illnesses by education, service development and research may be compromised. 4. Personal autonomy is not absolute and we are part of a society. 5. Allowing assisted suicide or euthanasia for some populations for example the terminally ill or the disabled, devalues the lives of those compared to those targeted in suicide prevention campaigns.”

Dr Mc Quillan cited research by The National Safeguarding Committee revealing that half of the population has witnessed abuse of an adult, and so she maintained that it is “not prudent to assume vulnerable people can be protected in the context of assisted suicide and euthanasia.“

People are already at risk, even with laws and regulations, and “changing the law to allow assisted suicide and euthanasia will endanger the lives of many”, despite suggestions that abuses of this type of legislation can be prevented.

She referred to research showing failures in the countries where medically assisted killing has been introduced. Even where restrictions were in places, there is evidence that euthanasia was offered to those who were not terminally ill or were suffering from psychiatric problems.

Dr Mc Quillan explained which areas within palliative care need development. She said: “the acceptance of assisted suicide and euthanasia could lead to an underinvestment in palliative care research and service delivery, as assisted suicide and euthanasia may be promoted as cheaper options than appropriate health care provision.”

Doctors who everyday deal with suffering and end of life decisions are rarely heard in public debates on these issues, which tend to concentrate on dramatic, high-profile cases. The experience and the concerns of those who offer palliative care are particularly meaningful as they offer a view that is an alternative to common emotional appeals.

“We do not currently have equitable access to palliative care, disability services, psychiatric or psychological support services and my concern and that of many working in health care is that to move in the direction of euthanasia would be to move away from investment in the appropriate services.”, Dr Mc Quillan said.

She also highlighted that, as women are more likely to live longer with greater disability and more likely to have less social support, they will suffer more if euthanasia or assisted suicide is introduced. Women, she claimed, “are more likely to be a victim of ‘mercy killing’ by a male family member in cases which have come to the criminal courts in different countries.”

Professor Des O’Neill was another firm opponent of medically assisted killing. He told the Oireachtas Committee: “That there might be two forms of suicide – one which is clearly upsetting and worthy of strenuous societal efforts to prevent, and one which might be tolerated and given the support and protection of law – is a deeply challenging and contradictory premise. … The decriminalisation of suicide was a humane initiative, aimed at avoiding stigma and further hurt in terms of both completed suicide and attempted suicide, and emphasising the need for help and support for people in this situation, an impulse that holds true for those seeking assisted suicide as well. It was certainly never seen to be an expression of a societal desire to extend access to suicide as a human right, or to position suicide as an act that equality legislation might facilitate”.

Prof. O’Neill criticised the idea of unlimited choice, based on the assumption “that all patients are independent and autonomous, even at moments of high vulnerability”. Instead, we should remember that decisions are often led by the “potency of prejudice against ageing and disability.”

He said that all the major UK advocacy groups for disability have rejected assisted suicide.

To those proposing ‘death with dignity’ he replied: “Human dignity is not a thing that can be lost through disability, disease, dependency, or suffering, although insensitive treatment or attitudes to those so affected can constitute undignified care.”

The promotion of dignified care, instead, is the best way to contrast assisted suicide. In this respect, health care professionals play a pivotal role. Their opposition to deliberately killing, or facilitating self-killing, is something rarely appreciated and highlighted in the current public debates about the end of life decisions.

Prof. O’Neill expresses this perspective clearly: “Public and private discussion with regard to assisted suicide should be seen to represent concerns over adequacy of treatment and support as well as existential concerns relating to the future: these need to be proactively addressed.

“To ask doctors to run counter to this by killing patients short-circuits and undermines our impetus to care, comfort and support and damages our framework of care. Current and future patients need to be reassured that the response of the healthcare professions to distress and pain is one of compassion and care, addressing the needs at a range of levels – biological, psychological, social and spiritual – while respecting wishes to the greatest extent possible.”

(Many of Prof. O’Neill’s points were reiterated in this recent radio interview: https://tinyurl.com/yymzstb3 )

Should those in charge get priority treatment in a pandemic?

In a previous blog I discussed an article published in the New England Journal of Medicine (NEJM) that debates certain principles for allocating scarce medical resources during a pandemic.

The authors propose four main values that can be useful when there is a shortage of resources. They are: 1. Maximize the benefits; 2. Treat people equally; 3. Promote and reward instrumental value; and 4. Give priority to the worst off.

I have already discussed three of them and now I will concentrate on “promote and reward instrumental value”.

We value things intrinsically, for their own sake, or instrumentally, for the sake of something else. For instance, a banknote has little intrinsic value, it is just a piece of paper, but when it is a legal tender it also has an instrumental value because it can be used to pay for something. We employ it instrumentally for something else, to carry out a particular function.

Similarly, we can value human beings for what they are, in themselves, or for what they do, instrumentally. If I need a plumber, for instance, I will choose the one that suits me best. I treat him as an instrument for my purposes (do the job being paid for) and there is nothing wrong with it as this is the nature of a commercial transaction.

But when we need to evaluate who has priority in accessing medical resources, should we treat patients for their intrinsic value, simply as members of the human family, or also for some instrumental value, such as their utility to society?

In normal circumstances, we treat them according to their needs. Their past or their future, their role in society, their usefulness should not matter.

We give should give the opportunity to access the same treatment to an important doctor and to someone who has injured himself behaving recklessly, or to someone who is in prison. We value patients not from the point of view of society, but intrinsically, for what they are and not according to their history because even the worst human being deserves care.

Nonetheless, this general equality principle does not apply in exceptional circumstances.

For instance, if there is a health emergency on a ship with hundreds of people, it is morally acceptable to prioritise those who are in charge of the ship over the rest, because if they die, everyone else will also die. The instrumental value prevails in this case.

How this apply to our circumstances?

The NEJM article says: “Instrumental value could be promoted by giving priority to those who can save others, or rewarded by giving priority to those who have saved others in the past”.

Using a technical term, I will call those “diachronic criteria” as they associate value to time, to what someone did in the past or will do in the future.

I maintain that, in allocating medical resources, diachronic instrumental value should not apply retrospectively. Obviously, those who have made relevant contributions should be recognised and rewarded but this should not count as a criterion to select who should have access to ICU beds, ventilators, etc.  Nonetheless, treatments are not awards based on past merit but they are remedies offered according to actual needs. The focus in on the present.

And what about future usefulness or utility? Does it matter? It does but as an ultimate measure and only for the limited time of the in exceptional circumstances. (Think of the previous example of the ship).

The NEJM article says: “Critical Covid-19 interventions – testing, PPE, ICU beds, ventilators, therapeutics, and vaccines – should go first to front-line health care workers and others who care for ill patients and who keep critical infrastructure operating, particularly workers who face a high risk of infection and whose training makes them difficult to replace. These workers should be given priority not because they are somehow more worthy, but because of their instrumental value: they are essential to pandemic response”.

They have a higher instrumental value because saving them we will also save other lives. Special considerations will be beneficial to them directly and to others indirectly. So, all things being equal, it is morally acceptable to favour them because of their indispensable role for society.

This kind of thinking seemed to be dominant in March when hospitals were outbidding care homes for PPE and staff leaving them in very short supply at great cost. Almost two-thirds of Covid-related deaths have occurred in care homes and, in the end, the hospitals were never overwhelmed with Covid-patients or anything close to it.

I don’t believe we have anywhere reached such an exceptional level of emergency that the survival of large part of the population depends on few health professionals, but this is an evaluation that has to be performed locally.

In any case, the main point is that “promote and reward instrumental value” should not be interpreted retrospectively. Diachronic instrumental criteria are valid only exceptionally, for a limited period of time, and for the actual benefit of others.

New law takes an axe to the natural ties

This week, the final parts of the Children and Relationship Act 2015 have come into operation. This legislation has changed profoundly the legal arrangement of family relationships but in a way that downgrades the importance of the natural ties.

Part 2 and 3, which were delayed because of technical mistakes in the original Act, contain provisions relating to the regulation of so called “donor-assisted” human reproduction (DAHR).  

This is when the gamete (egg or sperm), or the embryo, is provided by someone who is, consequently, the natural parent of the child but will not be recognised as the legal parent of the child. The legal parent will be the ‘intending parent’. Intention will trump biology.

In Irish law, a woman who gives birth is the mother of a child. This new legislation will allow another person, a man or a woman, to be added as parent with the Registrar for Births, Death, and Marriages, when the child has been conceived through donation.

What it is called the “intending parent”, who has no genetic link to the child, can be the mother’s spouse, her civil partner or a cohabitant.

The Act has effect on female same-sex couples but not on male couples as they need a surrogate, and surrogacy will be regulated by different upcoming legislation.

The legislation bans anonymity, with some limited exceptions. The name of the “donor” will not appear on the birth certificate but in a National Donor-Conceived Person Register. Those details will be accessible to the conceived person only when they reach 18, if requested.

The new law has effect on past and future donor-conceived children, but in a different way.

From this week, only children conceived artificially in a clinical setting in Ireland from a known donor will come under this legislation, while it applies retrospectively also to children conceived in Ireland or abroad in the past, even if the donor is anonymous.

Let’s explore the significance of this act.

It has been presented by Minister Harris and by commentators as progressive, inclusive and child-centered.

It is the opposite.

In so called “donor” conception, children are conceived with the intention of being deliberately separated from their genetic parents, and possible siblings.  This legislation facilitates this. It is not inclusive as it intentionally excludes children from their genetic connections.

The legislation is also based on the assumption that natural ties do not matter, or else barely matter. But it is a common experience in people conceived artificially to search for their genetic origins. And it is curious that the only exception to the ban on anonymous donation contained in the new law is when a family wants to create a sibling for an existing child using the same donor, which is anonymous to the family but not to the clinic. In these cases, and only for a transitional period that ends in 2023, the details of the donor do not have to be registered.

This exception proves that genetic connection between siblings is so important that even this contradictory piece of legislation gives it some priority over other principles.

With regard to anonymity, it is good that some details of the “donor” are registered but how is it in the interest of children that they are denied access to those details until they become adults? This is definitively not child-centered. No child or teenager under 18 will have access to those details. And even when they turn 18, how likely is it that they will ever a close relationship with the donor (biological) parent?  (More here) 

How is it progressive and inclusive not to include those details from birth certificates?

Those concerns were raised in the past, not only by the Iona Institute (here and here, for instance) but also by child law experts and activists.

An important article from the Law Society Gazette questioned the accuracy of those certificates and the “profound implications of deliberate falsification of legal documents.”  

Dr Joanna Rose, whose court case brought about a ban on anonymous donations in the United Kingdom, told the Oireachtas: “Reproductive technology is a social experiment and the adverse impacts and consequences are unravelling over time around the world. Only donor offspring can inform on these things. We pay for our own counselling, genetic tests to find lost relatives and live with false birth certificates and absent or misleading medical histories. We have [lost] ethnicities and ancestors, unparalleled numbers of siblings and half siblings and all this confronts most of us privately in adulthood. There is little understanding of the resultant grief and its disenfranchisement by our families and community at large.”

If the 2015 Act comes into full operation only today is because it contained a number of technical errors, as it was rushed into law just before the same-sex marriage referendum. This was an attempt to exclude certain issues (same-sex adoption, parenting, etc.) from the referendum debate.

Legislation on donor IVF, rushed into law for Marriage Referendum, had ‘technical errors’. Nonetheless, at the time we maintained that the referendum wasn’t simply on the definition of marriage but also on the right of children to have a mother and a father. Today’s new changes prove, once again, that we were correct.

Who should get priority treatment in a pandemic?

Philosopher Catherine Kavanagh has argued that the ambiguous expression “quality of life” can potentially be used to exclude those who are old or disabled from necessary treatments, especially at a time like this.

In Ireland, it is notable that fewer than 10pc of nursing home patients with Covid-19 have been moved to hospitals for treatment (see here), even though these homes account for a vastly disproportionate number of Covid-related deaths in Ireland.

What exact criteria are we using in deciding which elderly people get admitted to hospital in the current pandemic? It is not clear, but it is vital that we know.

An article that has been published in the prestigious New England Journal of Medicine discusses certain principles for allocating medical resources at a time like this. At first sight they seem to be sensible and agreeable but can also have harmful consequences if wrongly interpreted. In fact, and as we shall see below, it has prompted a critical response from a number of doctors and philosophers. We need a similar debate here.

The article in the NEJM is called “Fair Allocation of Scarce Medical Resources in the Time of Covid-19”.

The authors propose four main values that can be useful when there is a shortage of resources. They are: 1. Maximize the benefits; 2. Treat people equally; 3. Promote and reward instrumental value; and 4. Give priority to the worst off.

Based on a number of studies and documents produced through the years, those values can be interpreted differently and have to be translated into more definite guiding principles. The authors of the document propose six specific recommendations for allocating resources in the current pandemic, according to their own interpretation of those four values.

Without going into a detailed analysis of those recommendations, I will use the article to highlight how different interpretations give distinct outcomes that are not always ethically acceptable. The authors specify that no single value is sufficient to determine which patient should receive treatments.

I will deal with some of their principles here, and save the fourth value for a further article.

The authors say: “Fair allocation requires a multi-value ethical framework that can be adapted, depending on the resources and context in question”.

This is an important principle as abstract ethical considerations have to match with the circumstances. Ultimately, what is appropriate has to be decided by all of those involved, including the patients and their family. Nonetheless, a critical assessment of the ethical principles that guide those decisions is necessary beforehand.

I will begin with considering the fourth value, which is “give priority to the worst off”, as it is the one least discussed in the article but it is also the most ambiguous.

What does “worst off” mean? The article suggests two interpretations: the sickest or the youngest.

If the aim of medicine is to prevent, to cure and to take care, the worst off is someone who is in the poorest conditions from a clinical point of view. Someone who, using a clinical scoring system, is deemed able to recover but needs treatment more than others. (This would exclude futile treatments, when there is no prospect of recovery, and also non-necessary interventions, when someone can recover without treatment.)

However, other interpretations of the aim of medicine, focused more on well-being and quality of life, would claim that the worst off are those who “are at risk of dying young and not having a full life”, as the article explains, without endorsing this specific interpretation. The worst off could be “the younger people who will have lived the shortest lives if they die untreated”.

The difference between those two interpretations is not scientific but philosophical and it appears again in the discussion of the first value proposed by the NEJM article, which is the maximization of benefits.

This can be understood as saving the most individual lives or as saving what they call “life-years”, which means saving the patients who will survive longest after treatment. It is a crucial distinction.

A utilitarian approach to medicine would claim that those who have more years ahead of them, because of age or health conditions, should be prioritised. (I have addressed this issue in my previous blog).

A personalist approach, instead, would say that all persons have incomparable worth, which cannot be measured or weighted against.

The NEJM article first suggests a balance of those two approaches, which I doubt to be possible. Then it claims that the life-year principle “becomes relevant only in comparing patients whose likelihood of survival is similar”, which means that only when two are in the same situation the youngest, or the most able, will be prioritised.

This is not ethically acceptable as it amplifies and perpetuates existing injustice against individuals with disabilities or older. Disability or nearness of death does not diminish the value of a life.

The NEJM article has prompted a reply from a group of philosophers and doctors who, in their joint statement, say: “we fear the practical effects of emphasising life-years, especially in a culture like ours.….in which youth is worshipped and the natural effects of age are despised. Sometimes we fall into a pattern of thinking of the elderly as a ‘burden’—on themselves and on us. We already have political movements, and in some places laws and policies, that would permit or encourage assisted suicide or euthanasia for those with lives judged to be no longer ‘worth living’ or ‘burdensome’ to society, including the frail elderly.

“In this milieu, a policy of almost always prioritising the young over the old could reflect and entrench a bigotry that is already widespread. It could lead to a further devaluation of the lives of the elderly, which could work severe and often lethal harms far beyond the triage scenarios imposed by public health emergencies. That is a possibility that gives us strong prudential reasons to oppose any principles that would advise doctors to maximise the number of life-years saved rather than to look to the number of lives saved—old or young.”

After having considered the first (maximise benefits) and the fourth (give priority to the worst off) value proposed by the New England Journal of Medicine article, let’s move to the second one, which is “treat people equally”.

This one is less controversial, at least in principle, but the meaning of “equally” can be interpreted in various ways.

The authors reject the first-come first-served allocation that it is used in other contexts, such as a waiting list for organ transplants. Treatments for Covid-19 are urgently needed and if equality is interpreted as a first-come first-served approach, this would favour those who are closer to the health facilities or it would encourage overcrowding, as happens each year in A&E.

When patients have similar prognoses, the article suggests random allocation, like in a lottery. This is a simple solution, it is not particularly problematic from an ethical point of view and it would spare us from considering other non-medical characteristics. But those circumstances are rare.

In any case, when patients have dissimilar prognoses it is crucial that everyone is entitled to equal respect and equal concern, according to their needs.

“Promote and reward instrumental value”, the last principle proposed by the journal, is the most complex one and I will address it in my next blog.

Ethical questions in a pandemic

The current epidemic raises a number of profound ethical questions.  We are facing unprecedented events under the pressure of time and of limited resources. In the name of urgency and necessity we are experiencing exceptional restrictions of fundamental liberties, and a significant alteration of our familiar ways of living.

After the initial shock, when energies are inevitably focused on emergency measures, it is now time to address more fundamental issues that this epidemic has highlighted.

Why do we need a debate about ethics now? In the current exceptional circumstances, it seems that many decisions are not free choices, but they are rather dictated by necessity. Nonetheless, practical deliberations are always inspired by values. Either consciously or unconsciously, we all operate within a moral framework. We decide to pursue a certain course of action, rather than another, because we deem certain principles more important than others. This is obvious when we face conflictual duties – for instance, saving lives and preserving freedom – and we ultimately follow a certain road because of our deep philosophical commitments.

Strategic decisions are now led more by the assessments of the experts than the democratic mandate which legitimizes our political representatives. National and international bureaucratic structures define our common tasks in terms of measurable effectiveness to the point that we feel we are living in a tyranny of the specialists, legitimated by their scientific expertise.

Nothing should be done against science, but the problem is that science is not about ends, it is about means. Medicine tell us how to save lives but doesn’t tell us which lives should or shouldn’t be saved, and why they should be saved at all. Experts disagree, not only on purely scientific grounds – for instance, which treatment works better – but also on what we ultimately want to achieve. Different policies are expression of different values and it would be foolish to move through an epoch-defining outbreak without having a debate about what we ultimately want and why.

We need a debate about ends. What are we here for? The good life in a community, says an old tradition that goes back to our Greek philosophical roots.

What clearly emerges in front of our eyes these days is that we can’t understand ourselves as individuals. We are members of a community. My life depends on what other people around me do. My best efforts will count nothing without everybody else’s best efforts. More than ever, this epidemic requires us to think and act in solidarity, which literally means being strong together. This solidarity is necessary not only in action but firstly in the way we frame and approach our problems.

We are operating in fear and isolation, under the pressure of unprecedented events. We hear that we are forced to trade different values against each other.  But to think according to an ethics of solidarity means that conflicts and tensions should be framed not in terms of opposition but as if they all together threaten to the same end, which is the common good.

It would be wrong to present our dilemmas in terms of exclusive interests: for instance, should we care for the sick or for the one who might lose his job? If we address this problem through the prism of solidarity, we will realise that it is the same person who is at risk of getting sick and losing their job, it is the same family, it is the same community.

Roles are now swiftly exchangeable – a health carer becomes a patient – and the same person often embodies many roles – someone who works from home may also be a carer or a patient. There is no family or group that is not potentially impacted. Traditional categories such as social class, gender, ethnicity, are now insignificant. We are all one and should think in solidarity.

In a competitive struggle for scarce resources, we give priority to those we consider more valuable, overlooking the rest. In a solidaristic approach, we give precedence to those who are most in need.

As every epidemic, this one is significantly impairing what constitutes a community, such as the acting physically together. Everything that is communal is currently affected, from mourning our deaths to celebrating sports, from worshipping to travelling. However, the present epidemic is different when compared with the big ones of the past, think of the Black Death, because contemporary means of communication allows us to be united in spirit with those who are distant. Even if only virtually, certain expressions of solidarity are easier to perform.

As part of a community, we have a duty to limit some of our legitimate desires and demands if they put others at risk. And risk should be understood not simply in the sense of physical health. There is a risk of cutting meaningful relationships, of compromising the education of the younger generations, of impairing mental wellbeing, of destroying business and charitable work, of neglecting those who suffer for other reasons, etc.

The wide scope of risk is what makes this epidemic difficult to manage and it is not the role of ethics to identify what is practically appropriate in each circumstance. Our task, instead, is to inquire what goods we want to achieve and what moral principles should guide us.

I will address in a separate article the moral dilemma of prioritizing access to scarce medical resources but the general principle I am proposing, inspired by an ethics of solidarity, is that everyone should be cared according to their needs, rather than ability or, more often, inability to contribute to society.

An ethics of solidarity involves sacrifice. However, the question should not be formulated in terms of who we are willing to sacrifice for the common good. It is rather, what should be sacrificed? No one should be discriminated because is less abled, has less prospect of life, or can’t pay.

Different approaches and strategies employed to tackle this pandemic reflect who we care most. In any assessment of a balance of goods we should remember the dignity of the most vulnerable. Solidarity means that it is precisely those who are weaker that we hold stronger.

Measures have to be proportionate but what is a fair proportion cannot be determined in advance. By definition, this depends on the circumstances. What, instead, can and should be discussed is what society we wish for when promoting public health.

We won’t be able to do all the good we would like to accomplish but have we established what this good is? Let’s have this conversation.

Medical Council’s Ethics Guide now less ethical

The Irish Medical Council has produced an updated version of the Guide to Professional Conduct and Ethics for Registered Medical Practitioners.

 The most relevant changes follow the Ireland’s new abortion law.

Let’s consider them in detail.

Section 48 of the Guide was titled “Abortion” in the previous editions while now the euphemism “termination of pregnancy” is used. This expression is not accurate. For instance, in so called ‘reductive’ abortions, which is when only one of two or more fetuses is killed, abortion takes place, but the pregnancy continues, it is not terminated.

The expression “termination of pregnancy” is ideological more than factual. It tries to say that what is ended is not a human being but simply a pregnancy. It denies the humanity of the child involved. In changing the language of their guide, the Medical Council shows also a changed attitude towards those directly involved in every pregnancy, i.e. the mother and her child.

This is confirmed by the fact that paragraph 48.1 of the previous edition of the Guide, which said: “You have an ethical duty to make every reasonable effort to protect the life and health of pregnant women and their unborn babies”, has been now completely deleted.

One could easily argue that even where abortion is legal, doctors should still seek to protect the life and health of pregnant women and their unborn babies, as far as it is possible, while also respecting the choice of the mother. But the Medical Council withdrew any reference to the child in their updated ethical guidelines. The new version of paragraph 48.1 simply refers to the 2018 abortion Act.

Paragraph 49 is about conscientious objection. It contains no new formulation, apart from references to the 2018 abortion legislation and the introduction of the prohibition against providing false or misleading information.

But the context for it is very different. Before, abortion was not legally available in Ireland and so a pro-life doctor did not have to refer a pregnant woman seeking an abortion to a pro-choice doctor. Now they must do that.

It was after the Protection of Life during Pregnancy Act 2013, and even more now with the new liberalised abortion regime, that whole paragraph 49 acquired a new distorted meaning.

Paragraph 49 also refers to ‘medical treatments’, but of course, abortion is not a treatment, least of all for the baby.

Not even the new abortion law defines abortion as a ‘treatment’ or a form or care, but rather as “a medical procedure which is intended to end the life of a foetus”.

Those who conscientiously object to abortion base their position precisely on the fact that it is not a treatment or a form of care, and so they do not have a professional or moral duty to take part in it.

The new ethical Guide of the Medical Council should have recognised their position but it doesn’t.

Overall, the new Guide simply follows the changes in law and assumes that there is no difference between law and ethics. What happens if, one day, we decide to legalise assisted suicide and euthanasia? Presumably the Medical Council will sheepishly follow suit.