Incapacity

The problem of late-stage consent in Assisted Dying

Assisted-dying law in Canada requires the person to be alert and able to provide consent just before their death. The Government of Canada website on Medical Assistance in Dying (MAiD) says,

You must be able to give informed consent both:

  • at the time of your request
  • immediately before medical assistance in dying is provided

This seemingly sensible caveat has come under scrutiny after Audrey Parker, 57, diagnosed with stage-four breast cancer, made a public plea for it be abandoned. She died (an assisted death) on November 1st, but was frustrated that in order to benefit from MAiD she had to make arrangements earlier than she would have liked. However, being unable to guarantee that her mental capacity would be sustained during the next few months, she had to make a decision while still able to provide late stage consent. In her case it was quite possible that cerebral metastases, or intercurrent illness, would have rendered her confused or delirious.  The end result was that she had a ‘good death’, but was possibly deprived of some life.

Critics of assisted dying will see this as a very good example of why we shouldn’t legalize it in the UK. How can you pass a law that ‘forces’ people to die before their natural time?

Late-stage consent seems a good, safe idea. It has parallels with other medical interventions or procedures, where the patient’s final ‘permission’ is requested even when consent (or in this case an active request) has been provided earlier on. It ensures that only a patient who is absolutely certain on the day will have an assisted death. But this case shows that laws cannot accommodate all circumstances. There will always be situations that push at the boundaries. Those who support AD will say that the greater good is still served. More people are dying in Canada according to their own wishes, at a time of their choosing. Although apparently forced into a corner, Audrey Parker made a decision and was not coerced.

What if the need for late-stage consent was removed in diseases where cognitive performance was likely to be diminished over time? If a person loses mental capacity, they are unable to exert autonomy at the moment of death, and must hand over the final decision to another. That person, be it a loved one or a professional, will have to make the decision and initiate the final process. This sounds more like euthanasia. However clear the instructions given by the dying person – e.g. ‘when I lose my mind, please make sure my death is not prolonged, please make sure it is assisted’ – a difficult and onerous judgment has to be made by the advocate. The rate of progression of a person’s disease cannot always be predicted. There will be fluctuations. No-one knows how it is going to go, if there will be agitation, acute pain or a gentle retreat into coma. Identifying the point at which the dying person’s wishes should be enacted will be subjective. To ask another to do this, however strongly they agree with the dying person and however much they want to protect their stated wishes, appears too much.

The Canadian newspaper Globe and Mail, which has covered MAiD in detail, obtained a draft report by the Council of Canadian Academies into how to manage the problem of mental incapacity in the era of MAiD. The person with worsening dementia would be the most common presentation. Here, someone with their faculties intact will make an advance decision that their death be assisted when they have lost capacity and appear close to death. Again, this requires others to make a judgment on symptom severity and timing.

Kelly Grant and Jessica Leeder write in The Globe and Mail,

The draft of the partial report analyzes three scenarios for advance requests: Cases such as Ms. Parker’s, where patients have already been assessed by two doctors and approved; cases where patients have been diagnosed with dementia; and cases where people have not received a diagnosis but want to make an advance request for medical assistance in dying (MAiD), just in case.

“The complexity of each individual [advance request] for MAiD would be influenced by the timing of a request in relation to its implementation. [Advance requests] prepared shortly before MAiD was to be provided (e.g., when a patient already met eligibility requirements) would involve much less uncertainty than [advance requests] for MAiD written well in advance of the point at which they might be implemented,” the draft says.

Uncertainty is the issue. How to make decisions regarding a situation that has not yet developed. For people who do not have a diagnosis yet, the ‘just in case’ group, applying for MAiD seems unrealistic. For those with a condition that will predictably cause a loss of mental capacity, it would seem discriminatory for them to be exclude from MAiD. However, to maintain safety, this seems likely to continue. The Dying with Dignity Canada website, in its frequently asked questions page, is clear:

Can one make an advance request for AD?

In Canada, advance requests for assisted dying are not allowed. It is forbidden for a clinician to proceed with administering MAiD without first obtaining final consent from the patient.

[  ] The ban on advance requests has had serious implications for individuals who have been approved for MAiD and plan to die in the next days or weeks. In some cases, patients choose to reduce or even refuse pain medication out of fear that they will be too impaired to provide final consent for MAiD. For some, the pain associated with their medical condition is too great, and they must effectively abandon their request for MAID in order for their pain to be kept under control.

and,

Can a person with dementia qualify for AD?

[  ] A person with a capacity-eroding condition such as dementia might lose capacity before they satisfy one or more of the other eligibility criteria in the law. For example, the person might already be suffering intolerably, but they may not be in an advance state of irreversible decline, or their natural death may not yet be “reasonably foreseeable.” By the time they have reached an “advanced state of irreversible decline,” they may no longer be capable of providing consent for MAiD.

It seems clear that a law passed to ease suffering might, in some situations, cause distress, a sense of ‘hurry’ and occasional paradoxes, such as a patient foregoing pain relief in order to maintain capacity. A mess? Enough to discourage supports of assisted dying in the UK? Quite possibly.

But MAiD has been a success, in a manner of speaking. As Kelly Grant writes in the Globe and Mail,

…1,525 people hastened their deaths with the help of a doctor or nurse between July 1 and Dec. 31, 2017, up 29.3 per cent from 1,179 such deaths in the first half of last year.

There is clearly a need for MAiD in Canada, judging by its uptake. It is providing comfort to a highly vulnerable group who would otherwise lose control of their final hours. Do the ‘exceptions’ justify a change in the law such that MAiD can be extended to those without capacity on the day of their planned death? Is it justifiable that a those who ‘lose their minds’ are deprived of something that those who don’t can benefit from? Or is MAiD, still in its infancy, and a rare thing in a global perspective, too delicate to meddle with?

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For an excellent description of how MAiD came into law and who was involved, see this G&M article ‘Fight to the death: why Canada’s physician-assisted dying debate has only just begun’ by Sandra Martin.

 

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A rare and unpleasant duty: involuntary treatment and the deprivation of liberty

freedomOne of the most disturbing and unexpected duties of a doctor in training is that of depriving a person of their liberty.

The following secanario describes the emotional and intellectual challenges involved in sedating someone against their will to keep them in hospital. It is worth remembering that the doctors asked to deal with these situations can be junior and inexperienced. Their exposure to the legal frameworks that permit a doctor to do legally what only judges, police officers, prison warders, soldiers and psychiatrists do routinely, may amount to no more than 15 minutes during induction or the fading memories of a lecture three years before they qualified.

A 75 year old man with early dementia (which has had little effect on his life or degree of independence thus far) is admitted to hospital. He may have a mild chest infection, and is on intravenous antibiotics, but it’s one of those diagnoses that is made more because something “must be going on” than due to solid clinical evidence. During the night following his admission the house officer on call is asked to attend the ward urgently. The man is trying to self-discharge. The doctor, Paul, is used to this, although he is usually asked to dissuade younger patients, such as the alcohol addicted, those who regard themselves as indestructible or, sometimes, high-flyers who just ‘don’t have time’ to be sick!  He sits with the man, and hears how he is worried about his wife at home, unconvinced that he really needs to be here, unhappy with the whole ‘overreaction’. He is a bit agitated, but asks, quite sensibly and insightfully, if his medications can’t be delivered in tablet form. Paul thinks he has a point, but it’s the middle of the night and it would be crazy to start arranging discharge. Any anyway, when he looks at the blood resuts there are some very high inflammatory markers; there may be more going on medically than meets the eye. Paul seems to succeed in reassuring the patient, he agrees to stay, and that’s that.

The same ward calls Paul at 3AM. The patient is raging, marching up and down the ward in a highly agitated state; he has sworn and shouted, and he has cracked a pain of reinforced glass in the main door (which the nurse on charge locked during the build up). There are two security guards on the ward already, hanging back a few yards, not wishing to inflame the situation but ready to restrain him if necessary. Paul, a head shorter than the patient but over 50 years his junior, looks around him. Other patients are awake, some are equally as confused and relatively oblivious, some are young adults who are clearly horrified by the spectacle.

Paul talks to the patient, but the nursing staff have already tried reassurance and calm words without success. The patient pauses in his bubble of discomfort, indignity and despair, ringed by anxious faces and the muscle of the security guards. Paul asks him to go back to his bed space, but the words don’t seem to be heard. Paul approaches and attempts to lay a hand on the patient’s own hand, but immediately his arms rise and he begins to push away whatever spectres and threats he sees before him. The house officer perceives uncommon strength in the muscle of those arms, and knows from experience that delirium can lend the frailest patients the vigour of youth.

For this must be delirium. A usually calm man comes into hospital, wakes up in unfamiliar surroundings and tries to get home. His thoughts are clouded by the products of infection, cytokines, myriad substances, and, disinhibited, he does what he has never done in his life and breaks a window pane.

Then things deteriorate. The patient charges forward, collides with the resuscitation trolley, grabs it and swings it out into the corridor. Boxes fly onto the floor, a drip stand topples. He smacks another window but does not break it. He reacts to the pain. It is now getting out of hand. Paul knows what must be done. He instructs security to hold the patient and take him to his bed space. By this time there is a third member, and between them they pinion the patient and drag him away. The house officer looks around at the other patients, at their wide eyes in the dimmed light, and wonders how this looks. Once on the bed the patient begins to scream, for his every effort is met by opposition. A nurse has already gone for the lorazepam, and now presents the house officer with a two ml syringe containing 1mg of that drug diluted in one ml of saline.

Paul identifies the place where he will give the injection and asks the security guards to keep him as still as possible. Gently, Paul exposes an area of thigh, quickly wipes the skin and plunges the needle. He kneads the muscle for a few seconds, encouraging absorption, and hopes that it will begin to take effect soon. It does, miraculously. The tone leaves his patient’s limbs and his vigour drains away. A nurse thanks Paul and the activity around the bed subsides. Good job.

But it was not so simple. While he was preparing the skin and preparing himself for the injection, Paul paused. He looked at the patient’s face and listened to his words. The elderly man was articulating clearly, saying things like ‘Don’t let them do this’ and ‘Take me home’ and ‘Why are you letting them do this?’

Taken in isolation each cry and phrase appeared to reveal a very clear intent, a transparent desire not to be here, not to be sedated and controlled. Every planned action in Paul’s stressed mind was contrary to the patient’s wishes. But he knew that he must give the injection because the patient really was not of sound mind at this time. He was delirious, he had no mental capacity. He was ‘incapacitate’ and a danger to himself, let alone others. As he brought the syringe close to the skin, Paul sensed a sudden relaxation, and looked up at the patient’s face. His eyes, boring into those of the young doctor’s, communicated a depth of emotion and desire that was hard to ignore. They were the same eyes, windows into the same mind, that two hours previously had explained in logical terms why he wanted to go home. Perhaps this was just anger. Haven’t we all ‘lost it’, as children, after a punch on the nose or a terrible taunting. Wasn’t he just extremely frustrated, able to see no other way out. Perhaps, having tried reason, he could no more than scream and fight. Was this truly a loss of capacity?

During the pause Paul asked himself if what he was doing was right. He quickly ran through the mental capacity checklist:

Can he understand what we’re saying to him?

Can he retain that information long enough to be able to make a decision?

Can he weigh up that information and understand the consequences of his decision?

Can he communicate his decision?

Well, Paul thought, let’s consider this. Understand – why not, who is to say. He could before. Retain? We’re not really giving him the time to test that are we. Weigh up? That’s pretty subjective…he already told me what he thought about the risks of going home versus staying in hospital, when we met earlier. It’s the same decision he’s being asked to consider now, and his point of view has evidently not changed. And communicate? Hell yes, he’s communicating in every conceivable way. So is he really incapacitate? I can’t absolutely, with complete and utter confidence, say that he does not. But as he bucks and shouts under the well-trained restraint provided by ‘security’, this intellectual debate seems irrelevant. If I don’t do something he will stand up, charge out of the ward in his night clothes and run through the car park into the road. There is no question as to what is right. I must sedate him in his best interests.

As Paul walks away from the ward into the numerous tasks that must be completed before the sun rises, he comforts himself. Of course it was right. Any right thinking doctor would have done the same. But this challenge positioned him in absolute opposition to the expressed desires of his patient. This was worse than causing pain by messing up venflons; it was more distressing, in its immediacy and philosophical distastefulness, than telling someone they have cancer.

oOo

In the field of psychiatry, where involuntary detention and treatment is a common enough demand, there is a well established and well rehearsed legal framework to guide practitioners and protect patients (the Mental Health Act). In the field of general medicine, where physical illness can impair cognitive function, things are less clear, although efforts have been made over the last decade to draft appropriate laws and make their application straightforward. The Mental Capacity Act 2005, and its Deprivation Of Liberty Safeguards (DOLS) addition (2009) are realistic and practical. As described on the Alzheimer’s Society website,

‘In an emergency, the management of the hospital or care home may grant itself an urgent authorisation, but must apply for a standard authorisation at the same time. This urgent authorisation is usually valid for seven days, although the supervisory body may extend this for up to another seven days in some circumstances. Before an urgent authorisation is given, steps should be taken to consult with carers and family members.’

The DoLS legislation appears aimed more at ongoing situations where individuals are re-located against their will, locked in, their movements and activity controlled. In fact DoLS legislation was brought about in response to the ‘Bournewood case’ (well described in this European Human Rights Commission webpage) in which a man with autism was kept in hospital for treatment that doctors felt was in best interests. His usual carers complained and took the hospital to court. The government, seeing that there was a legal gap whereby reasonable deprivation of liberty could not be legal, enacted DoLS.

However, what we as doctors are often asked to do on-call or in the emergency department may not amount to deprivation of liberty. It may feel like it, but ‘restraining or restricting’ a patient in their best interests may not require DoLS to be invoked. There is a role for common sense applied urgently and safely. As described on the legal firm Morgan Cole’s website,

Restraint or restrictions on an incapacitate individual’s liberty can be justified under the Mental Capacity Act 2005 provided:

– reasonable steps are taken to establish that the individual lacks capacity in relation to the matter in question; and

– it is reasonably believed that the individual does lack capacity in relation to the matter in question; and

– it is in the best interests of that individual for the act to be done; and

– it is reasonably believed that it is necessary to do the act to prevent harm to that individual; and

– the act in question is a proportionate response to the likelihood of the individual suffering harm; and

– the act in question is a proportionate response to the seriousness of that harm

Paul and his patient seemed to meet these considerations, but the thinking and empathic doctor, highly trained in the art of understanding a patient’s plight, listening to their words and seeing their point of view, will never find it easy.

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Substitutes

You invite the closest relative of a critically ill patient into a private room and discuss what can be done, what can’t be done, what’s realistic, what’s inevitable…and gain a sense of what your patient’s attitude to major medical intervention might have been. You ask a question, ‘What do you think they would want us to do?’ You have entered into the process of eliciting a ‘substituted judgment’ (SJ). What would the patient have wanted if they could speak to you now, right now? If they knew what the pros and the cons were, what the risks and the benefits were, what the burdens and the rewards were, this is what they would ask you to do – Leave well alone, palliate, ‘allow natural death’, or go to the ends of the earth to find a cure, ventilate, dialyse, put tubes in here and tubes in there, do whatever it takes…

SJ seems to make perfect sense. It is the nearest we can get to a conversation with the patient. But what if those who are close to the patient are not, in fact, very close at all? What about patients who have become isolated, or through their lifestyles have spurned or avoided continuing contact? In such situations the opinion of a relative or a friend will be little more than guesswork. How much of their opinion will be based on supposition or reliance on their own values, or on very historical impressions that they may have gained of the patients possible desires? If the validity of that SJ is clearly challengeable, it comes back to the clinicians to start making decisions in their patient’s perceived best interests. Thus the pendulum of power swings back from the patient’s autonomous existence before they entered hospital to a more paternalistic, medical arena. Conscious of this, and in effort to minimise accusations of playing God, doctors are swayed by the slightest clue as revealed by the Next of Kin who attend the hospital when patients are incapacitated by illness. Great weight is placed on their words.

SJ has its critics. Looking back to its legal and philosophical underpinnings in history, it seems to derive from the ‘legal fiction’ created to justify the appropriation of funds from relatives who had been confined to asylums. Louise Harmon of the Touro Law Centre (New York), an evident sceptic, wrote in 1990,

‘substituted judgment…has its origins in the early nineteenth-century law of lunacy. Lord Eldon crafted the legal fiction of “doing that which it is probable the lunatic himself would have done,” permitting equity courts to make gifts of the lunatic’s surplus income to relatives for whom the lunatic owed no duty of support.

About twenty years ago the fiction was borrowed from the law of lunacy into the law of informed consent. There it has been used by courts to remove organs from the body of the incompetent, to sterilize him, to force medication on him, to let him wither and die, and virtually fall off the vine.’

Less trenchant critics have analysed the weaknesses of SJ in great detail, and I will summarise these later in the article. But first I will put words into the mouths of some fictional protagonists to demonstrate its frailties in a recognisable context.

oOo

She loves life you see…
A 78 year old woman, Ella Hughes, is rushed into the Emergency Department. She has suffered a heart attack and is in cardiogenic shock – her blood pressure is critically low, she is confused because her brain is not being perfused properly, and other organs are beginning to fail too. Her kidneys have shut down, her oxygen levels are low. The intensive care team have already been called to review her. It is the registrar who first speaks with her husband. Having examined the patient the registrar goes into the room with an air of pessimism. She has seen – has become persuaded – that the patient is probably dying. She introduces herself.

“Hello, I’m Sarah Jones, one of the intensive care doctors. What’s your relationship to Mrs Hughes?”
“I’m her sister.”
“You came into the hospital with her?”
“I was called my her warden. They’ve got my number.”
“So where does she live?”
“Roedean Court it’s called, they’re warden controlled flats, you know, for…”
“Yes.”
“How is she?”
“Very, very ill. She has suffered a very large heart attack. Her heart is failing as we speak. I’m sorry, but I don’t think she can survive…”
“You mean she’s dying?”
“I…I think so.”
“There is nothing you can do?”
“There are always things that can be done, theoretically. But we have to think…”
“What ‘things’? Please, tell me.”
“Well…” She is disquieted. She did not expect this. She thought the relative would understand and accept that Ella was dying. “Well, there are drugs, to keep the blood pressure up…and devices…to strengthen the heart, temporarily…”
“Good. Good. So can she have those. Perhaps she will get better. The heart can recover, can’t it. I had a heart attack too, five years ago…and I’m fine now.”
“It’s not that simple. To do those things would require taking Ella to intensive care, inserting tubes into her, a ventilator I’m sure… we have to be sure that there is reasonabe chance that these things will work, and that she would want us to do those things to her.”
“Oh I’m sure she would.”
“Has she spoken to you about these sort of things…about what she woud want if she was so ill.”
“She has, in the past. She loves life you see. She’d do anything, go through anything, to prolong it. I know she would.”
“I…I’ll need to…”
“I know it’s not up to me, you’re the doctor, but I don’t want you to give up on her. She’s just come in…”
“Okay, I understand. I’ll just go and talk to my consultant…”
“Good, please do. Can I go and see her?”

We’d better do it.
Dr Jones rings her consultant.

“Her sister wants everything.”
“Has the patient said anything?”
“No, she’s barely conscious now.”
“Is she dying, now, in your opinion?”
“Well yes, but that’s inevitable if we don’t support her. The question is should we support her. When I saw her I assume not, she was so sick, but the ED staff have put her on CPAP, started some Dobutamine, she looks better.”
“So you may have made the wrong call. The ED have done the right thing to keep her going. What about the cardiologists, can they cath her? That’s what she needs isn’t it.?”
“No. Too unstable. They think she needs a balloon pump for 24 hours, then review.”
“We’d better do it.”

She hardly sees her!
Ella is transferred to ICU, sedated, ventilated, central lines inserted, haemofiltration catheter, and a balloon via her femoral artery into the aorta. She remains unstable. She remains silent. Sarah Jones is back on the unit 24 hours later. She sees a man enter the unit to visit Ella.

“Hello. Are you one of Ella’s relatives?”
“I’m her husband. Tony Hughes.”
“Oh…I thought…”
“We were divorced many years ago. But when I heard that she was so ill I decided to come in.”
“Her sister rang you?”
“Her sister. What, Dorothy? No, our daughter called me. Has Dorothy been here then?”
“She was with her when Ella came in. She is down as Ella’s nexy of kin actually, so we have been talking to her quite alot.”
Mr Hughes looks uncomfortable and unhappy.
“What’s the matter.”
“Dorothy doesn’t know her at all! She hardly sees her!”

Don’t let anyone keep me going like that
Sarah speaks with the consultant in charge of the unit – not the one who was on call on the day of her admission.

“I spoke to her for twenty minutes, she convinced me that Mrs Hughes would want aggressive treatment. Now I find out she barely knows her sister. Lives three miles away but sees her once a year or something.”
“But it’s all we’ve got to go on isn’t it? It’s the closest we’ve got.”
“I think the husband knows her better.”
“And what does he say?”
“That she’d hate to be as she is now, connected to machine et cetera. He bases that on the fact that the were married when Ella own father died of cancer and Ella said something along the lines of ‘don’t let anyone keep me going like that.’ But this was over a quarter of a century ago.”
“How did the sister get such a different impression?”
“She bases that on the fact that Ella was always so vivacious, energetic and positive. She lives abroad, that’s where she met her husband, and travelled extensively. She was a prominent feminist, a journalist in the seventies, then developed depression.”
“You know all about her.”
“Her husband was very helpful.”

Another day. There is no improvement. The intensivists and the cardiologists discuss her prospects at the end of the bed.

“The echo shows her aortic valve is tight. The angio we did yesterday wasn’t too bad. What she needs is a new aortic valve, a transcatheter aortic valve implantation, a TAVI. It’s not entirely out of the question, if she remains like this and no worse.”
“She’s on multiple organ support. We were coming to the conclusion that this is an unsurvivable situation.”
“Perhaps it is. Perhaps not. What do the family say?”
“There’s a…difference of opinion.”
“Strong either way?”
“Not unreasonably so. Neither relative can tell us with any confidence how far Mrs Hughes would want to go.”
“Well I can make an estimate, say 30-40%, that she will survive. There are other risks of course, like stroke. We’ll leave to option out there. I’m happy to speak to the family myself, if you think that would help. Who is the next of kin?”
“On paper…her sister.”
“And she’s…”
“Pro everything.”

I felt like I was responsible
Her sister returns home, and phones a close friend.
“It was strange. I felt like I was responsible. They asked me what they should do. Well, they seemed to need my opinion, and what could I say? It sounded liek they were giving up on her already. I couldn’t let them do that without challenging them. We haven’t been close since we were teenagers, it’s probably my fault, I wasn’t there for her when she developed depression, and she didn’t come to me when she was getting divorced. I’ve always felt guilty about that. But now, if there’s sometying I can do for her I’m going to do it, and if that means fighting her corner while the doctors try to turn away I’m going to do it!”

Her ex-husband phones their daughter.
“Hello Mary. She’s bad. They’re doing their best but it’s a terrible sight. Tubes everywhere, totally sedated. They seem to be unsure about what to do next, whether to send her to London for an operation or let nature take its course. Your aunt seemed to think she’d want to go through anything to last a bit longer, but I’m not at all sure.”
“Is it up to us then?”
“I don’t think so. But if it’s a borderline situation, medically, perhaps what we say will make a difference. They asked your aunt about resuscitation I think, and she said they should give her mouth to mouth and all that! I tried to let them know that I thought that was going too far. I mean, I know I haven’t spoken to your mother for a few years now, but would she really want that?”
“We’ve never really talked about these things.”
“Well we did, when her father was dying. She was very forthright.”
“Then you should tell the doctors.”
“But that was years ago, and a completely different situation. They won’t want to hear all about that.”
“I’ll go in and speak to them. Will this operation they’re talking about work?”
“They’re not sure. It’s risky.”

On the ICU
“Day 4. Are we getting anywhere?”
“Not really. Inotropes are down, but she’s still in multiple organ failure.”
“I think we should pull out. She’s not going to survive this.”
“Her sister won’t be happy.”
“None of us are happy. It’s a sad, terribly sad situation. But if we genuinely believe that all this is becoming futile it’s all rather academic. Nothing is going to make a difference. The TAVI is pie in the sky, I’ve been there before, the chance of her getting accepted and transferred is so small.” Turning to the nurse, “Can you ask the next of kin in this afternoon, I’ll speak with them. It’s a sister isn’t it?”

oOo

The case of Karen Quinlan
The relevance of substituted judgment in medical ethics was first explored properly in law during the case of Karen Quinlan, a 21 year old woman from Pennsylvania who sustained severe brain damage a 15-20 minute respiratory arrest attributed to an accidental overdose of diazepam, dextropropoxyphene (an opioid that used to be an ingredient of Coproxamol in the UK) and alcohol. Karen had been dieting to fit into a party dress, had barely eaten for two days, and weighed 52kg. She ended up in a persistent vegetative state. Her father, a Catholic, argued in that she would not want to remain alive in such a state, and the judge allowed her doctors to disconnect the respirator. She survived, breathing unaided, for another 9 years, and eventually succumbed to pneumonia.

KarenAnnQuinlan

Karen Quinlan, image from Wikipedia

After much discourse, which included reviewing ‘…the reasoning expressed by Pope Pius XII in his “allocutio” (address) to anesthesiologists on November 24, 1957’, the judge wrote:

Our affirmation of Karen’s independent right of choice, however, would ordinarily be based upon her competency to assert it. The sad truth, however, is that she is grossly incompetent and we cannot discern her supposed choice based on the testimony of her previous conversations with friends, where such testimony is without sufficient probative weight.

Nevertheless we have concluded that Karen’s right of privacy [which is taken to mean ‘the right to be left alone’, or not to be subjected to ‘extraordinary means’ to preserve life in this context] may be asserted on her behalf by her guardian under the peculiar circumstances here present.

If a putative decision by Karen to permit this non-cognitive, vegetative existence to terminate by natural forces is regarded as a valuable incident of her right of privacy, as we believe it to be, then it should not be discarded solely on the basis that her condition prevents her conscious exercise of the choice.

The only practical way to prevent destruction of the right is to permit the guardian and family of Karen to render their best judgment, subject to the qualifications hereinafter stated, as to whether she would exercise it in these circumstances.

If their conclusion is in the affirmative this decision should be accepted by a society the overwhelming majority of whose members would, we think, in similar circumstances, exercise such a choice in the same way for themselves or for those closest to them.

It is for this reason that we determine that Karen’s right of privacy may be asserted in her behalf, in this respect, by her guardian and family under the particular circumstances.

It is quite affecting to read this in the original judgment (linked above) – the legal underpinning (in the United States at any rate) for an essential part of daily medical practice!

Inconsistencies and ignorance
Criticisms of substituted judgment are articulated very well in a 2008 paper by Alexia Torke, G. Caleb Alexander and John Lantos, ‘Substituted Judgment: The Limitations of Autonomy in Surrogate Decision Making.’ They firstly explain how,

‘The philosophical appeal of this standard is that it supports the patient’s autonomy by leading us to the decision that the patient would have wanted.’

But the essential problems are, according the authors, threefold;

  • Inconsistency: studies show that peoples’ opinions about what they would want change over time,

‘In one study over half of patients who initially said yes to a series of medical procedures changed their minds over two years. Furthermore, mind-changing is not random. Individuals who fill out an advanced directive are less likely to change their wishes than those who do not. Thus, the patients who most need substituted judgment, because they lack a living will, are the ones for whom it is least likely to be accurate.’

  • Inaccuracy; relatives are not good at understanding what patients ‘would have wanted’

‘A recent meta-analysis of surrogate predictions found that surrogates are correct about 68% of the time’

  • Patient preference; patients may not actually want their presumed former opinions to be a major factor in decision making at such times

‘…there has been extensive research examining whether patients really want their prior wishes to be the sole basis for decisions made on their behalf. This research reveals that the majority of patients prefer that family members or physicians have input into the decisions. In these studies, as in the ones examining the stability of patients’ preferences, the patients who were most likely to want their wishes to prevail were the ones who more often wrote advanced directives.’

There are other concerns, such as the subconscious tendency of relatives to ‘project’ their own beliefs. And what of the overwhelming nature of the task that is presented to relatives? The rules of this strange, imaginary exercise are unknown. As Linus Brostrom writes about this problem of ‘underdetermination’ (in his thesis ‘The Substituted Judgment standard: studies on the ethics of surrogate decision making’),

All it assumes about it is that the patient is “competent”. But, first, it does not clarify how competent the patient should be imagined to be. And second, neither does it clarify any other aspect of the patient’s hypothesized condition, such as the patient’s (hypothetical) beliefs, values, commitments, emotions, mood, or the external circumstances surrounding the decision. Depending on how the scenario is described in these regards, this could presumably have consequences for what the patient would have decided.

Confused? Imagine being asked to make sense of it in the ED.

The Mental Capacity Act – why worry?
Keen students of the UK’s Mental Capacity Act will know that decisions made by medical staff, or the courts should it come to that, do not depend on SJ. So why the worry? Although a rigorous and subtle approach to determining the patient’s ‘best interests’ is required, I am sure most clinicians will recognise the process of trying to work out what the patient ‘would have wanted’. It comes naturally as part of caring for a patient, as an exercise in re-creating them as whole, competent, communicating persona. What is more, legal authorities do tend to accept that act of exploring what a patient felt about certain circumstances (eg. terminal illness, or resuscitation) overlaps, to some extent, with SJ. For where do we find that evidence of prior thoughts and feelings but in those closest to the patient?

Antal Szerletics writes in a useful review, ‘Best interests decision-making under the Mental Capacity Act’,

‘The Court also makes it clear that the English notion of objective best interests cannot be equated with the substituted judgment approach as adopted in the United States but the views and the personality of P will necessarily form part of the best interests assessment.’

The author then reproduces part of a judgement, concerning a patient, P:

  • P’s wishes and feelings will always be a significant factor to which the court must pay close regard.
  • Secondly, the weight to be attached to P’s wishes and feelings will always be case-specific and fact-specific. In some cases, in some situations, they may carry much, even, on occasions, preponderant, weight. In other cases, in other situations, and even where the circumstances may have some superficial similarity, they may carry very little weight. One cannot, as it were, attribute any particular a priori weight or importance to P’s wishes and feelings; it all depends, it must depend, upon the individual circumstances of the particular case.

It sounds very much like to SJ to me, as a non-lawyer.

Life Story
Alexander Torke and colleagues propose an alternative: referring to and using the patient’s ‘life story’. Thus,

‘Surrogates consider the life story of the patient and make decisions that seem consistent in light of the patient’s previous choices and experiences. A narrative approach acknowledges that when individuals lose decision making capacity, they can no longer control their health care decisions. This loss of control, however, does not mean a loss of individuality or dignity. Such basic aspects of a human being can be carried on by loved ones who make decisions for the individual that are consistent with his or her own life choices. By such an approach, surrogates do not try to predict the actual choices that an incapacitated loved one would have made, as they would under substituted judgment. Instead, they make decisions that consider the individual’s interests and values in the context of their current situation.’

This simple approach is very appealing, and, I would argue, perfectly natural. I would imagine that most relatives, when asked what they think the patient would want, actually go through a similar thought process anyway. To do this requires knowledge and imagination – it is a form of extrapolation, such that the result in based in reality but can stand unsupported without true evidence. Guesswork perhaps, but inspired by proximity and emotional insight, and facilitated by a sensitive health care professional who can supply a medically accurate context.

This approach has been accepted by the American Medical Association, which writes,

‘…much empirical research indicates a low correlation between proxies’ decisions and what patients would have decided in hypothetical situations. Because there is no direct deductive relationship between values and a particular choice, or between previous decisions and current positions, the surrogate is often left to make an approximation of what the patient would have wanted. At best, substitute decision making requires great imaginative effort to process a patient’s web of values, preferences, and medical judgments.

Rather than attempt to predict what the patient would say about treatment preferences, the patient’s life story is considered, and a particular option is evaluated in terms of its “fit” with the elements of the patient’s life story. This narrative model rests on the idea that individuals create an identity for themselves through their life story and it is through this narrative that persons conceptualize themselves. Thus, the physician and the surrogate have a prima facie moral obligation to continue the story in a manner that is meaningful and consistent with the patient’s self-conception. It is possible that more than one choice is compatible with the patient’s self-conception.’

So, it seems the principle of SJ, on which we rely to guide our decisions, is flawed. Should we be worried. I don’t think so. Why? Because I don’t think we do rely on SJ. How many of us have asked a relative or loved one to actually make a decision? Few, I would say. The way we deal with such situations is to talk, to feel our way into the mind of the patient through the Next of Kin, to gain a sense of what they would be happy with and how much suffering, risk or chance they might accept in proportion to the possible gains. I think that most of us talk, converse, share, learn and, finally, approach consensus by tactfully and empathetically filling the gap in the ‘life story’ that is described to us. Having read the research, criticisms, studies and articles, I fail to recognise in my own practice, or that of my past trainers or current colleagues, the exercise of pure SJ. The good doctors begin to write that life story in their head as soon as they meet the relatives. It is an art and a skill that those who meet hundreds of patients per year develop naturally.

oOo

The final thoughts of Ella Hughes
“What did I really want? I can think it, but I can’t tell you, not from where I lie. Suffice to say, it has hurt. I have suffered. For a while I thought it might be worth it. I caught a few words from the heart doctor…he was talking about some operation. I was hopeful. Then it all went silent. No more talk about a new valve. And that was my last chance, I think. Now I am going downhill. I believe they have given up. I don’t mind, because I know I am dying. It was obvious to me from the moment I collapsed. But I wish they could have made up their minds earlier, and not prevaricated. If there was nothing that could be done, fine…don’t do it. But they talked to my sister. My sister! At least Tony knew me for what I am – a pragmatist. He would have told them the truth about me. Do only what is useful, don’t do anything just for the sake of it, for some idealistic ‘life at all costs’ ideology. I don’t suppose they do that anyway nowadays…but he’ll have told them. That’s been the story of my whole life..pragmatic, no frills, no waste, no fuss…’

(I am very grateful to Katherine Sleeman, palliative care registrar and clinical lecturer at Kings College London (Twitter @kesleeman) who made some very helpful comments regarding the difference between US and UK law when this post was first published.)

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