Tag Archives: ethics

Critical care

I was one of the lucky ones this year and was not working on Christmas Day. After my shift on Christmas Eve I fed the cat, packed up the car with presents and headed to my brother’s house. Waiting for me was a glass of mulled wine, and a hug. Christmas Day was lovely and it was with a heavy heart that I left my family and battled the driving rain in order to get back to London for my night shift on Boxing Day. My feelings of dread were not misplaced: the shift was tough. But most of my shifts have been tough of late. I am in the midst of a six month rotation on ICU (the intensive care unit), having left the familiarity of the acute medical ward and the outpatient clinic, replacing them with a world of ventilators, alarms and intense emotions. I am used to hard work, but I find intensive care physically and emotionally exhausting. It has taken me by surprise just how difficult it is to get through the weeks and I have begun to realise that this is primarily due to a concern that not everything I am going is ‘the right thing’.

Clinicians in Intensive Care Unit

I spent a large proportion of Boxing Day night with a single patient. He was intubated and ventilated when I met him, so I found it difficult to engage with him as anything more than a body in a bed – a constant challenge for me on ICU. I spent the night watching his organs fail and escalating his treatment: I performed fluid challenge after fluid challenge; added inotropes and vasopressors and maximised their doses; corrected his electrolytes; gave bicarbonate in an attempt to improve his acidosis; watched his urine output fall to nothing and started haemofiltration. He did not improve. During the day shift whilst I was at home asleep he had a cardiac arrest. CPR was performed which led to return of a pulse. I returned and continued to try to fix his physiology, but it was futile. We all knew it. He died attached to machines and monitors: oedematous, battered and bruised. It is not a death I would wish on anyone. He had presented with an acute problem which warranted aggressive treatment but as all treatments failed it rapidly became clear he would not survive. And yet we continued. And performed CPR. And still continued. I do not know what he would have wanted, but this is not what I or his nurse wanted.

He was not the only patient I felt uncomfortable about that night. As I proceeded around the ward, inserting needles and lines, changing ventilator settings, sedating and paralysing those whose numbers were wrong, more than once I did so with gritted teeth. Many of my patients had not arrived in ICU after a sudden unexpected event like a stabbing or a car accident, but as the result of chronic disease and advanced age. More than once I asked myself whether I was saving lives, or prolonging death.

I am sure my unit is no different to any other. I am also aware that I rarely see the results of good outcomes. Some patients do make near-miraculous recoveries. Patients with severe head injuries leave the unit alive and breathing but unable to speak or walk – I do not see them after months of rehab when they are leading happy, productive lives. I also know that many of the senior physicians are expert is discussing limits of care, realistic prognoses and withdrawal of invasive treatment. But these conversations happen too late. Too many patients with chronic disease arrive in ICU without ever having considered what they would want if they became severely unwell. Too few people understand what ICU is, and what can and cannot be achieved by expensive machines. Too few people express their wishes in advance, and so the default is always to treat, treat, treat, and when there is no hope left, treat some more. A quote from Atul Gawande’s book from an ICU physician sadly rang true when she complained she was running “a warehouse for the dying.”

In this context it was with great interest that I read a number of studies into ‘moral distress’ suffered by ICU staff. Moral distress is described as the angst of feeling trapped between “what people think they ought to do, and what they’re compelled to do.” Moral distress is studied to a greater degree in nurses, and is perhaps more common in nurses than doctors, due to perceived powerlessness in the hierarchy. It is recognised that moral distress is a complex phenomena, dependant not only on an individual’s beliefs, but also the context in which he or she practices and the support structures that exist. A number of factors are contributory, including end-of-life controversies such as inconsistent care plans and families demanding that aggressive treatments are initiated or continued when all hope for recovery is gone.  Perceptions of futile interventions were highly correlated with moral distress, and increased with duration of experience in ICU.  Reading these studies was reassuring, as others experience the same phenomena as I have been, and also concerning, that such distress is relatively common. Most studies suggest processes or interventions to ensure staff can voice their concerns and feelings, in order to reduce distress. This certainly happens on an informal basis on my unit, where colleagues are open, honest and supportive, and on a formal basis during morbidity and mortality meetings (although it now strikes me that only doctors are present at these meetings). However, we do not have Schwartz rounds, or an equivalent and I wonder what effect they would have when the fundamental problem, a lack of advance care planning, still exists.

death_everyone

Of course it is difficult and upsetting to talk about death. Death itself is upsetting. But we are all heading there, and not talking about it is damaging us all. Doctors need to better equip themselves for talking to their patients about what happens at the end, and what their priorities are. And patients need to feel more empowered to make their wishes known. I have met patients who want every possible invasive intervention until the second they die. I may disagree with their choice personally, but would fully support it as a professional. But I have met many more who, given the choice, have clear ideas on what they do and don’t want and where, for them, dignity and quality of life become more important than more time. I am sure a significant number of patients who have died on my ICU in the last two months would have chosen a different death.

I have four months left in ICU and a lot more to learn about ventilation modes, renal replacement therapy, and inotropes. But more importantly I have a lot more to learn about death, decision making and dealing with my own moral distress.

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.

Last week a man asked me to kill him

I had just told Mr George* that his end-stage heart failure had become refractory to treatment, and I thought it likely he would not survive this hospital admission. He looked at me carefully and said, “Well that’s it then. Can’t you just give me something…end it for me?”

This is not the first time a patient has asked me such a question, and will not be the last. Often the question is more ambiguous, and it is unclear exactly what they are asking for: “can you just put me to sleep?” could be interpreted as a plea to end their life, but could equally be a request for a break from their symptoms or thoughts, with the hope of a more energised remaining time afterwards. It is a constant challenge to interpret such questions appropriately and personalise support and treatment for the needs of the individual.

In this case I did not hesitate in giving the only answer I could. Both the law and the GMC’s guidance are very clear that both euthanasia and assisted suicide are illegal. However, I always feel uncomfortable with the knowledge that I am powerless to alleviate suffering that is not physical. People who are dying have complex emotional and existential needs that a shot of morphine is not going to touch. What often strikes me about patients like Mr George is that the thought that they are dying still seems to be a surprise for which they are unprepared. I wondered whether he had talked about his thoughts and wishes for his death before now, and whether the many healthcare professionals he must have encountered in the year up to this admission had ever broached the subject with him.

Death is an inevitable part of life but as a society we seem unwilling to acknowledge this. As doctors we are as guilty as anyone; complicit in the idea that advances in modern medicine have the potential to cure all. The medicalisation of death and dying have hidden it away behind sanitised white doors; no longer is it commonplace to see a grandparent die at home surrounded by family, as it once was. The secularisation of society has also contributed to a disconnect between life as we experience it day to day, and a bigger concept of time, place and meaning.

As doctors we need to talk about death with our patients and give them the space to express their beliefs and wishes. As individuals we need to talk about death with our friends, partners and families and break the societal taboo. Some believe a “good death” is an oxymoron, but I disagree. For my own death I hope for comfort, dignity and a fulfilling life before it inevitably comes to take me. Life matters. Dying matters.

*names changed to maintain confidentiality