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.
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…”
“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.”
“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.”
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?”
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.
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.
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.
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.)