Tag Archives: autonomy

Would I lie to you?

Most days at work pass in a blur of clinics, referrals, ward rounds, meetings, emails and phone calls. But work as a doctor is more than tasks. It requires a repeated, brutal confrontation with the realities of pain, suffering and illness; with humanity itself. At the end of the day I am sometimes left with emotions and questions that I can’t leave behind at the doors of the hospital. I have often felt poorly equipped to approach the grey areas of medicine that no textbook or Google search can answer. And so this year I signed up for an introductory course in Philosophy.

Last week our topic was moral philosophy which attempts to answer questions such as “how should I live?”, “what ought I to do?” We began with a discussion on whether it is ever right to lie.

Life imitating art

I was surprised when, early in the discussion, one of the class asserted that doctors lie all the time, particularly about poor prognoses and impending death. They expected doctors to lie to patients if asked if they were dying, and seemed to accept this. This resonated as I recently faced exactly this situation. I was asked by a patient if he was dying, and I answered honestly, ‘yes‘. He died the same day. His family were extremely upset and challenged me over what I had said. They felt I had hastened his death by taking away hope, and that I had no right to divulge this information without their consent.

I have thought a lot about this patient, my response and his family’s feelings. Was I right to answer honestly? Did he really want to know? Is there any truth in the assertion that removing hope hastens death? Is false hope of any value? Is it ever right to lie to a patient?

everybody lies

Would would Kant do? 

Philosophy offers some possible answers. Kant’s deontological theory asserts that it is always wrong to lie as we have a duty to tell the truth. This is true whatever the consequences. Kant believed that people have instrinsic worth or ‘human dignity’ through being uniquely rational agents, capable of freely making their own decisions. Lying does not give people the respect they deserve and robs them of their human dignity as it prevents them from exercising their rationality. Also, since I would not want to live in a world in which lying was commonplace, I should assert the maxim ‘do not lie’ and act in accordance with this.

From a Kantian perspective, therefore, I did the right thing in answering my Kantpatient honestly, even if that may have hastened his death and caused distress to his relatives. Most people find Kant’s absolutism challenging. Life is complex and nuanced and always telling the absolute truth inevitably causes harm which could be avoided. Our class quickly cited many examples of situations in which it seemed morally right to lie and we questioned whether that was because Kant was wrong, or whether we were too weak to live out our convictions.

One problem with a duty-based moral framework is that different duties may be in opposition. If I have a duty to both tell the truth and exhibit compassion, which should be prioritised if I believe they are in conflict? How do I decide which is the ‘higher‘ duty?

Consequences

An alternative approach is consequentialism, born from utilitarianism. Jeremy Bentham and his followers assert that the only question you need to ask when deciding on the best course of action is “what will bring about the greatest happiness and the least pain?”

benthamOne challenge to utilitarianism is that we can never truly know what will happen as a result of our actions. However, we can seek out all available evidence to help us make likely predictions. Every decision we make in life is based on the information available to us at the time, rather than absolutely all information known to man.

After reflecting on my patients’ family’s words I searched for evidence on whether knowledge of terminal illness shortened prognosis. I have heard many anecdotal tales of patients living for a few extra days or weeks in order to witness some important personal event such as a wedding, a birth or a final farewell with a relative flying in from abroad. I had not heard much discussion of patient’s rapidly declining after having frank discussions on prognosis.  A literature search did not reveal anything that helped me answer the question. It was therefore challenging to weigh up this potential harm as a result of my actions.

One consequence of lying that is more predictable is that it leads people to make decisions based on false information. In this case, it could have prevented my patient from saying important last words and seeking resolution, forgiveness or solace from friends and family. It is difficult to put a value on this but many who write about their own terminal illness cite the importance of these conversations at the end and I would not want to rob someone of this opportunity due to a paternalistic vision of ‘protecting them from the truth’.

As Freud said:

“The doctor should be opaque to his patients and, like a mirror, should show them nothing but what is shown to him.”

When is a lie not a lie? 

Interestingly, defining lying may not be as simple as it first seems. Sam Harris’ definition highlights that deceit is a necessary condition:

‘To lie is to intentionally mislead others when they expect honest communication’

This made me think. Did my patient expect honest communication? Or was he looking for me to collude with him in false optimism? I place a high value on hope but do not believe in giving false hope and in this case all my education and experience told me that this patient had days left at most. I like to think that I am sensitive to cues and that in this case he truly did want to know. In fact I realised that very few people ask “am I dying?” directly. Forming the words and uttering them aloud must take courage, and I think almost all of those that muster sufficient will to ask do genuinely want an answer. I am careful never to answer subtle, side-stepping queries too directly, and to try to match my language to that the patient chooses to use. It seems I already attempt to assess whether my patients expect honest communication, without having thought about this aspect of our relationship before.

We can never know what a patient’s true intention is when they ask us for truths no-one really wants to hear. But I think starting from an assumption of patient autonomy, and therefore responding with honesty is the morally right thing to do.

Doctor, know thyself

We must also be careful not to fall into the trap of imposing our personal values on those for whom we care. Personally, I would always want to know the truth, however hard it might be to hear. I value autonomy and my ability to act rationally based on all available information above almost any other right or virtue. But this is not so for everyone. In my quest to be honest and avoid paternalism I must be careful not to do harm by giving too much information too fast.

The philosophical physician

My foray into moral philosophy has not provided me with any definite answers to my original questions about whether I was right to tell my patient he was dying, or whether it is ever right to lie to a patient. But it has provided a framework through which I have been able to question and defend my actions – to others and, more importantly, to myself.

As I left the hospital this week I felt just a little more content, thanks to the wisdom of Aristotle, Kant, Bentham and Mill. Philosophy has a lot to offer physicians. I intend to open my mind.

 

Further reading:

Do you have a right to die?

I like to think that I am in control of my life and get very frustrated when this control is taken away, even in trivial ways: when train delays make me late, when I am waiting for an interview panel to decide whether to employ me or when a relationship ends and I am on the receiving end of the “it’s not you, it’s me” speech. I often wonder how I would react to something more serious and substantial being taken out of my control. Something such as my health, my independence or my autonomy.

Autonomy and rights are a common focus of discussion, especially as we have moved from a paternalistic to a partnership model between the doctor and patient. Such issues have become central to the debate surrounding physician-assisted suicide and assisted dying. Do we have a right to choose the timing and manner of something so fundamental as our own death? To what degree do the wishes of an individual have to come second to the perceived adverse effects on society?

Debbie Purdy, who suffers from primary progressive MS, and fought for a clarification of the law should her partner assist in her suicide. She continues to campaign for a change in the law

In a landmark, and now famous, case heard by the Law Lords in 2009, Debbie Purdy contested that the 1961 Suicide Act constituted an interference with her rights, within the context of her private life, under article 8(1) of the European Convention on Human Rights. She argued that she had a right to decide to kill herself, that this was part of her private life, and that this right was infringed upon by the 1961 Suicide Act. The Lords ruled in her favour. This did not, however, change the law; encouraging or assisting suicide still carries a sentence of up to 14years imprisonment.  As a result of this ruling the Director of Public Prosecutions (DPP) was forced to issue new (interim) guidance on who should be prosecuted. This guidance concentrated not on the health of the victim as may have been expected, but on the motivations of the suspect – for example, clear evidence of compassion mitigates against prosecution. So we now have a situation in which current law acknowledges that a person has a right to a private life, and that this extends to the decision to end their life, but that assisting another person to do this is illegal. However, if assisted suicide is thought to have taken place but to have been done for compassionate reasons and not for personal gain a prosecution is unlikely to be pursued (none of the 31 cases brought to the attention of the DPP since Feb 2010 have been prosecuted).

Some have argued that this situation is appropriate and that current law has “a stern face but a kind heart.” They argue it maintains a necessary hard line against any attempt to end a life, but allows for understanding and individual circumstances to be taken into account when rulings take place. However, those who have had experience of this process do not feel it is fit for purpose. It leaves relatives, friends and doctors with the threat of criminality hanging over them as they struggle to make difficult decisions, with compassion and dignity. One of the necessary factors for not prosecuting is that the person assisting in the suicide does not benefit from the death, but it does not define what would constitute a benefit. As Debbie Purdy points out, if her husband inherits half of their house has he benefited from her death? It also perpetuates an inequality that those who are physically able can end their own lives, either themselves or by travelling to Dignitas, but those who have progressive diseases that leave them physically disabled cannot. They may decide to take their own lives earlier than they would wish to “before it’s too late”. Furthermore we have, as a society, accepted assisted suicide and do not stop those who wish to do so travelling to Dignitas in Switzerland. It is indefensible to export our moral dilemma abroad.

When we talk about the morality of assisted dying or euthanasia we often consider the difference between acts (eg injecting a lethal dose of drug) and omissions (eg removing a patient from a ventilator and “letting them die”). There are those that see these as morally distinct but Shaw, amongst others, argues that despite the fact that legally the two cases would be treated very differently (possibly a charge of murder in the first case) there is no moral distinction. He goes further and considers how we define death and its implications. “If we agree that brain death is the end of a person, we should adopt brain life as the central aspect of personhood in terminal patients and accept that the body is merely another type of life support.” If this is the case, then “turning off” that life support via the mechanism of active assisted suicide would be ethically permissable. Such examples and comparisons are helpful in highlighting the inconsistencies in our initial “gut feelings.”

Throughout all of these difficult debates we must be very clear as to our definitions. The call for a change in the law relates to “assisted dying” which specifically applies to ending the lives of those with terminal disease. This is different from “assisted suicide” which includes those who are not thought likely to die within the next 12months but who may have other reasons for wishing to end their life.  There are some, such as Jacob M Appel (a bioethicist) who believe that all competent adults have a right to end their own lives, and that the right to die is a useful test of the overall freedom of a society. There are not many who share his view and this is not what is being proposed. Importantly the current proposals for a change in favour of assisted dying would not help Tony Nicklinson, who is currently fighting a legal battle for his right to die. After suffering a massive stroke he is paralysed below the neck and can communicate only by blinking or through limited head movement. He has, on numerous occasions argued that his existence is undignified, intolerable and that he is in constant suffering. This is not the view of every paralysed patient but this is not the point: the only person who can decide on whether they have quality of life is the individual. Tony Nicklinson successfully articulates his wish for autonomy:

Tony Nicklinson who wants to be assisted to die and is awaiting a High Court hearing of his case.

“By all means protect the vulnerable; by vulnerable I mean those who cannot make decisions for themselves. Just don’t include me. I am not vulnerable. I don’t need help or protection from death or those who would help me.”

The judge was absolutely right when he said the underlying issues in the case “raise questions that have great social, ethical and religious significance and they are questions on which widely differing beliefs and views are held, often strongly”. Care not Killing and Dignity in Dying are just two campaign organisations on opposing sides of the debate. Tony Nicklinson is now seeking a declaration by the High Court that “it would not be unlawful on the grounds of necessity for Mr Nicklinson’s GP, or another doctor, to terminate or assist the termination of Nicklinson’s life”.

The Commission on Assisted Dying, which published its report earlier this year, took into consideration many valid fears including a slippery slope effect widening an initially narrow scope of the terminally ill to other patient groups; concern that the vulnerable would be coerced into decisions they would not otherwise choose; objections by doctors, who had concerns about a change in the doctor-patient relationship, or who would not want to be part of the process on moral or religious grounds; and wider concerns about what is deemed to be a good quality of life and who decides, including concerns from Disability Rights groups. The Commission’s chair Lord Falconer feels that a workable solution has been found and that it is time for a change in the law.  Stringent safeguards, regulations, and monitoring have been proposed that should stop us using fear as an excuse to move forward with the debate.

Personally, my views on these issues have changed over time. I hope to remain in control of my own destiny, to the extent that this is possible, until the day I die. I certainly do not want others placing a value on my life and determining whether it has an appropriate level of quality. These are things only I can decide.  As a physician I am a passionate believer in the value of high quality palliative care, and its ability to give people a “good death”. But I also believe that there are a group of people for whom no amount of drugs or counselling will alleviate their suffering, and who want a compassionate alternative to a life they feel is unbearable.

Putting personal views aside, there is an urgent need for greater public engagement with these difficult issues. The voices of those wishing to end their lives grow louder and more numerous. There must be open and honest public debate, scrutiny of the findings of commissions, and legislation in accord with the realities of living and dying in the twentieth century. Science and society have moved on; our ethics and laws must catch up. The medical profession needs it, patients deserve it, and the public  demands it.

My health, my choice?

I spent this Christmas, as I’m sure many others did, over-indulging in rich foods and alcohol, and barely moving from the sofa. I made choices that were far from healthy, and take full responsibility for the resulting lethargy, bad skin and headache.

But on a larger scale, to what degree is an individual responsible for their health? It is all too easy to label the smoker with lung cancer, the alcoholic with liver failure or the obese patient with heart disease as culpable and look no further. And of course it is true that no-one held a gun to their head and made them smoke, drink, or eat to excess. But this view is dangerously narrow and simplistic. The actions of individuals and their health-related actions must be viewed within a broader social context. We act as individuals but we do not live in a vacuum.

There is a huge body of literature on the social determinants of health, encompassing the  effects of the physical, social and cultural environment. To hold people responsible they must have true choice and control. But to what degree does an individual make a true choice, influenced as they are by their sex, race, socioeconomic status, education level, peer group, and cultural identity in addition to being bombarded by manipulative and exploitative advertising? Focusing too strongly on individual responsibility in relation to health is particularly unfair in relation to poverty. Poverty itself has a negative impact on health, even when individual factors such as smoking and poor diet are controlled for. It is no longer a radical concept that people at progressively lower socioeconomic status levels have correspondingly less opportunity to control the circumstances and events that affect their lives, and that control is imperative to well-being.

Class as a factor must not be ignored. Not only does class have a huge impact on an individual’s beliefs and expectations of health, but the debate on personal vs societal responsibility for health is often conducted in a class-influenced framework. Most of the discussion is led by the privileged middle-classes – politicians, academics and physicians who are wealthy, highly educated, with the freedom to consume and act on the information on “healthful choices.” Those that are castigated for making “poor choices” in relation to their health are often the working class; seen as stubborn, short-sighted and a drain on the country’s constrained health resources.

Putting politics and morality aside, on a practical note, to make real population changes a population approach is required. A huge burden of disease can be directly attributed to a combination of smoking, obesity and a lack of exercise. This costs, and will continue to cost the country vast sums in healthcare, social care and lost work days. As a public health strategy, targeting individuals to take more responsibility is unlikely to have a significant impact on these large-scale health problems. Society-wide initiatives work – banning smoking in public places has had a much greater impact on quit rates than years of poster campaigns and a “nudge” approach.

We need healthy public policies and health-promoting environments, that support individuals in making choices conducive to good health. We can still safeguard autonomy and acknowledge that different individuals within the same context make different decisions. But we must avoid victim-blaming, which helps no-one.