Futility

Death eclipsed

 

Finding the right balance between active treatment, which may include surgical or semi-surgical interventions, and palliative care, can be difficult. The two can go on in parallel, of course, but often a full palliative care assessment and plan takes place when the primary medical or surgical team have drawn a line under their management. Ideally, palliative care expertise would be provided alongside active treatment, if it is recognized that the medical condition is incurable, death is likely in a certain time-frame, and there are symptoms that need to be alleviated. In the real world, perhaps due to resource limitations, perhaps due to fear of confusing families, or perhaps because it is very difficult to ‘do’ palliative care while patients are being taken away for various procedures, the two approaches tend to occur sequentially. If a patient dies shortly after such an intervention, there will be regret that the right balance was not achieved. A potentially ‘good’ death was eclipsed by hospital-based interventions that ultimately brought no benefit.

 

In this scenario I describe a patient, Thomas Franklyn, for whom the correct balance between active treatment and palliation was difficult to find. It is fictional, and I have deliberately kept the ‘procedures’ and the ‘disease’ unnamed, so that its principles can be applied in any medical area.

 

Part 1

Complaint: Excerpt from letter, written by family member to the Trust:

‘…we do not understand why Thomas had to go for all those procedures, including one to stop bleeding that occurred as a complication, when he was clearly dying and suffering. The doctors asked him how he felt about having them, but he was in no state to give an answer. By the time the palliative care consultant came to see him he was so weak, any chance of going home had passed. In the end he died in the hospital which was not what he wanted. It was obvious that he was dying from the beginning, but because of these decisions his last few weeks were spent waiting, recovering from procedures or in pain… ‘

 

Part 2

View from the ward sister:

You can often tell when death has become inevitable. The patient engages less, eats less, sleeps more. There weren’t the classic signs of imminent dying in Thomas’ case, but we all knew it was not far off. So on the wards rounds we mentioned palliative care, and the doctors agreed it was time. But at the same time there were more procedures that could be done, not for the sake of it, but because they were designed to ease certain symptoms, or reduce the risk of infection, and ensure a bit more time. We asked Thomas if he was happy to have them – he was quite capable of agreeing and signing consent forms – and he said yes. He got through the first two procedures pretty well, but the after the third there was a bleed, and we rushed him down one night to sort it out. They stopped it, but he was never the same afterwards. A lot weaker, far less engaged with us and the family. He never really recovered. Palliative care came to see him again, and because our team now made it clear that there was nothing else to be done from their side, they started full end of life care… a syringe driver etc. I could tell the family weren’t happy. They had set their hearts on him getting home, had prepared a room downstairs. But he deteriorated too quickly. It was so sad. Then, two months later, we received the complaint…

 

Part 3

View from Foundation Year 1 doctor (FY1):

I’ll never forget this patient. I discussed the case with my educational supervisor and wrote a reflection on it. The main challenge, for me, was balancing that sense of diminishing returns from the procedure against the time it was taking to arrange them, and the discomfort they caused. We all knew he was dying, and to be fair my consultant discussed the possibility that the procedures might be futile, but on the other hand if they worked, it was possible that Mr Franklyn would survive an extra two months, maybe three. That would have been a real gain, for him. But it didn’t work out.

The thing is, I had a sense that it wouldn’t work out. Mr Franklyn was getting weaker every day, not eating well, and I had a bad feeling. In the discussion about futility, which we had in a meeting room one morning before heading out to do the ward round, I was asked my opinion. It was my second month as a doctor. I was really pleased to be asked, and I said that I thought he looked very frail and wouldn’t tolerate any complications well. But as soon as I started talking, I thought – what do I know? I haven’t even seen a patient with this before. I was very happy to accept the consultant’s view, as she must have seen hundreds. So we talked to the family and the patient, who was still alert enough, and were honest that the benefit could be good, but that it would take more time to get the procedures done. They agreed. We didn’t say they were high risk, I don’t think my consultant would have suggested them it they were. But then there was a complication, and it appeared to speed up Mr Franklyn’s dying. I remember going home thinking – I knew it! I was right that time, but next time I might be completely wrong. You have to respect experience.

 

Part 4

View from the consultant:

At the end of the day, it looks like a bad call. I was very careful to involve the whole team, nurses, the family, and the patient of course. But in these situations where you’re dealing with quite specific diseases and specialised procedures, people look to the clinical leader in the team. They are the ones who have seen it before, who have the deepest experience. The patient, Mr Franklyn, was passive… by which I mean weakened by his illness and happy to receive advice from a team he trusted. It isn’t right or fair to dump all the information, the pros and the cons, on a patient and wait for a yes/no answer. People are different, but they often need to be guided. That is our job. I guided him towards the procedures that, if successful, would have allowed him home for a good couple of months. One of them went wrong, as we know.

What about the palliative care side? That was a criticism, that we – I – didn’t get pall care up sooner. Well we did, but Mr Franklyn was being prepared for procedures, getting transfusions, having antibiotics to cover the procedures, having regular blood tests… the situation wasn’t really stable enough for them to initiate a calm management strategy. So I said, look, we’re in the middle of everything, we’ll let you know when the procedures are done. We were proactive on agreeing an escalation plan and resuscitation parameters, but even that was a bit tricky. What if he deteriorated just after, or during, an intervention? Should we let him go without any circulatory or breathing support, or try to re-stabilise? Can you take a patient with a obviously terminal condition to ICU to get them over an acute, procedure related complication? ICU may have a view different to the ward team? If you decide no, you should tell the patient as they go for the procedure that if they deteriorate they may never wake up again, as we will let them go. Who is going to agree to that? (In the event he did deteriorate, with a bleed, and that required all hands on deck for a while.)

What did I learn? The more I see of these sad situations, the more I am inclined to say to patients, yes, there are things we can do, and they may work, but we are not going to stop the underlying disease. So do not be afraid to draw the line. Tell us when you have had enough. We, the doctors, may not be the best ones to tell when that time has come, despite all our training and all our experience. It may sound like I am absolving myself of responsibility, but sometimes it is true.

 

Part 5

View from the palliative care consultant:

I often ask myself the question – how emphatically should I make the argument against further interventions, if I feel that the patient is likely to die very soon? This requires very careful analysis, and each case is different. I  am asked to see patients under many adult specialties – neurology, cardiology, general surgery, gastroenterology, gynaecology – and each one has its specialised procedures, its own evidence and knowledge base. Although I am confident that I can recognize the approach of futility, I am not always right, and I have seen lives extended almost miraculously, by fairly straightforward surgical or endoscopic or radiological interventions. They can work. So it is not justifiable for me to come onto a ward and say, wait, slow down, leave this poor man alone, he is ready to go home to die. On the other hand, I, and the specialist nurses, and perhaps ward nurses, may need to be guardians of a patient’s dignity if we feel the specialist team is having trouble seeing the wood for the trees. It’s a balance. Each time. With Mr Franklyn, events show that we were wrong, and I was wrong. If I had stepped in assertively after the second procedure, recognizing that he was continuing to go downhill, we may have been able to get him home, albeit for a week. That would have satisfied the family, and Mr Franklyn. We lost that opportunity.

This cases adds to the sum total of experience. It also confirms that while we do our best, we cannot control the disease, nor can we control the outcomes of every procedure. Complications do occur. They will occur. But usually, they do not, and the patient gets the best out of the procedure.

We involved the family in every decision. The patient too, but he was becoming disengaged. We decided to see the treatment strategy through – perhaps there was an element, in the primary team, of ‘now we have started we should finish’. And it didn’t go as we hoped.

The complaint, when it arrived, was upsetting. But it shows – and this is a lesson – that although we thought the family were alongside us with the decision-making, they weren’t, not entirely. We flattered ourselves that there was consensus, but perhaps we convinced ourselves of that because we knew what direction we wanted to go in.

 

 

***

 

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Birthday party

Lonely birthday by Stephen Davies


It was time. After a week in hospital Mrs G, in her late 80’s, had failed to improve from a chest infection. Her frailty meant that the chances of making it out of hospital were shrinking. We were duty bound to discuss resuscitation. I knew what I thought: there was no way it would work. Before we entered the bay, I asked the team what they thought – all agreed. Was that their true opinion, or where they just following my lead? All one can do is ask. I looked to the senior nurse. She agreed too. It was not a difficult decision, medically. “By the way,” said the nurse, “It’s her birthday.”

            I approached the bed space. Mrs G was drowsy, but a hand on the shoulder and gentle rock caused her to wake. She had all her mental faculties, full ‘capacity’, as we say. I knew already that there were no family members living nearby. I started in the usual way, with a brief examination and review of the latest blood tests. Then I prepared to deliver my line – ‘I thought we should talk about what might happen if you get worse… if your breathing or your heart deteriorates… there’s a chance that your heart could stop suddenly… it’s called a cardiac arrest…’

            Her thin arm lay outside the sheet, and I glanced at the name band. The date and the month… today. There were no cards, no flowers. I paused. Was she even aware? “It’s your birthday,” I said. “Yes,” she replied, in a neutral tone. It had no significance for her. Birthdays are only as special as the people around you.

            Images of her as a young girl waking up in a state of excitement, 80 years ago, entered my mind. The juxtaposition between youthful health, optimism, a life not yet lived, and present reality… was stark. My words, formally raising the prospect of death, would symbolize the end of the dreams and ambitions she had nurtured. Perhaps most were fulfilled. I did not know.

            “Well, happy birthday anyway,” I muttered. She smiled weakly. We moved to the next patient. The tasks we had set ourselves – agreeing limits of care, completing a DNACPR form – were incomplete. “Not today,” I said to the team. “Not today.”

 

***

[Patient details changed.]

Reputations: the light and the dark

‘Light in the darkness’ by Pat Cegan

 

A recent thread on Twitter brought up a subject that is really spoken about. Elin Roddy kicked it off with a comment that patients admitted to nursing homes should routinely be engaged in conversation about their preferences towards end of life. With habitual frankness, she later commented that there is a danger that those working in hospitals who are more willing and able to do this, run the risk of gaining a ‘reputation’. Others confirmed that they had indeed become known in their Trusts as being prepared to discuss resuscitation and sign DNACPR forms.

This is something that has bothered me for a long time, being one of the self-acclaimed “willing”. What if a doctor acquires a reputation as being comfortable with the fact that their patients might die? Might that realism be construed as nihilism? Might they come to be regarded less as a saver of life, but rather an usher into the next? Uncomfortable!

Doctors lie on a spectrum. Some cannot bring themselves to consider the possibility of death, and continue to propose active treatment even when the patient does not seem to be responding. Others readily identify signs and symptoms indicating that life expectancy is limited, and are prompted to initiate a (sometimes) difficult discussion about end of life care. Some move across different points on the spectrum, but it is quite possible that they feel at home near one end or other.

If a doctor actively seeks the signs of imminent dying in the belief that they will save patients the burden of futile treatment, there is a theoretical danger that they will fail to recognise opportunities for saving them. A doctor on the other end of the spectrum may identify ‘survivors’, and during their career may be credited with helping to save patients that others would have ‘given up’ on. However, in doing so they will probably push more patients through periods of aggressive and ultimately futile treatment. How many ‘failures’ it takes to justify one ‘success’? This sounds like an overly cold and impersonal way of looking at things, but it is a justifiable metric. In my recent paper on DNACPR decisions, I cited a study by Paniagua et al, who found that ‘29 octogenarian patients with cardiac arrest have to be treated with CPR to net one long-term survivor’. That ratio doesn’t look good.

As a patient, do you want your doctor to be the one who looks for any chance to cure, or who accepts that death is sometimes inevitable and changes their approach swiftly if things are not going well?

Of course, it all depends on clinical context, and on your wishes. However, in the 8th and 9th decades, when physical frailty is significant, comorbidities sometimes numerous, and mental capacity variable, the assessment very much depends on the doctor’s perception. Their instinctive position on the aforementioned spectrum may make a big difference.

They may be influenced by the type of patients they tend to see; their case-mix. A palliative care doctor will spend his or her days looking out for signs of terminal deterioration, and (almost by definition) will not be looking for opportunities to commence heroic new treatments. The elderly care physician will try to balance the burden of curative or preventative treatment against the realistic benefits. In my specialty, hepatology, I see patients in their third and fourth decade who look as though they are going to die in the next week or two (usually from multiple organ failure as a complication of cirrhosis). But, being young, they might pull through if we keep supporting them in the ICU. The reward, survival, seems to justify any cost – long weeks in ICU, months convalescing. But the price (not mine, the patient’s) to pay for failing to recognize that organ support is not working, and carrying on with fingers crossed just in case there’s a ‘turnaround’, is a prolonged death attached to multiple life-support machines.

Negotiating optimism and pessimism in these situations is difficult, and as I described in a recent case report, fluctuations in clinical condition that result in changes of tack on the part of the medical team can result in what looks, in retrospect, like vacillation. This goes to show that few of us are comfortable in diagnosing dying, and, especially in younger patients, will always choose life-prolonging/saving treatment if there is a chance, however small, that it will work.

There are other, perhaps less noble, drivers to continuing with aggressive treatment in the face of apparent futility. Perhaps a patient’s management is being led by another consultant or team, and it does not feel right or comfortable challenging their decision. Perhaps the underlying disease is well outside my expertise, and I do not feel confident commenting on the likely disease trajectory. Perhaps the team treating a patient are known to be therapeutically aggressive, and are bound to take suggestions that they should rationalize treatment badly. Perhaps I have seen too many patients die recently, and just want a good news story…

In my view, as a doctor who is generally comfortable and accustomed to recognizing futility, we must be careful not to lose the ability to see glimmers of hope, even if those glimmers are not apparent until the murky surface presented by illness is scratched away by a period of active, optimistic treatment. As long as we are able to admit defeat when things are going wrong, and brave enough to explain that to our patients or their families, it seems reasonable to sit on the optimistic end of the spectrum most of the time.

In this way we might witness recovery against the odds, feel good about, and use those cases to motivate and enthuse our teams. At the same time, there is no harm in being known as a realist who can identify the signs futility when they begin to accumulate, and who is willing to change direction even if that means pushing against the prevailing wind.

***

 

‘I wouldn’t want it but…’ – commentary on an important paper

 

do unto others title

This study, published by the open access journal PLOS1 last week, approaches but does not solve two important questions: Why do doctors provide intensive treatment at the end of life when they would never accept it themselves? And how can they propose such treatments when evidence suggests that patients do not want it?

The paper begins by presenting general data on public opinion about preferences at the end of life, such as,

‘More than 80% of patients say that they wish to avoid hospitalizations and high intensity care at the end-of-life, but their wishes are often overridden. Most patients at the end-of-life prefer care that is focused on augmenting their comfort and dignity…’

and,

‘Studies show that the end-of-life care patients receive depends not on the patients’ care preferences or their advance directives (AD) but rather on the local health care system variables like institutional capacity and individual doctors’ practice style’

So the authors asked over a thousand young doctors about their attitudes to advanced directives (ADs), which in the US are an established method of allowing patients to determine, broadly, what sort of treatment they receive in the context of critical or incurable illness. The questions cast ADs in both a positive and a negative light, and examples included:

dountootherssamplesquestions

The 2013 group were also asked to fill out a simulated AD themselves, which look like this:

  1. Choice To Prolong (full-code status): “I want my life to be prolonged as long as possible within the limits of generally accepted medical treatment standards” (or)
  2. Choice Not To Prolong (no-code): “I do not want my life to be prolonged if the likely risks and burdens of treatment would outweigh the expected benefits, or if I become unconscious and, to a realistic degree of medical certainty, I will not regain consciousness, or if I have an incurable and irreversible condition that will result in my death”.

Their answers were compared to a large group of community doctors who had been asked the same 14 questions about ADs in 1989, just as the Patient Self Determination Act was about to be passed. The two groups are quite dissimilar, and although I did not find the comparison between two eras that enlightening, the authors did find significant differences in 3 aspects:

‘Compared to 1989 cohort, the 2013 doctors (a) were unlikely to believe that AD will lead to less aggressive treatments even for patients who do not have an AD (b) had greater confidence in their treatment decisions if guided by an AD and (c) were less worried about legal consequences of limiting treatment when following an AD.’

The contemporary respondents were generally supportive of the idea of ADs, and did not feel that use of ADs posed a threat to the fundamental duty of doctors, the preservation of life, in other contexts. They felt that ADs can enhance autonomy and can legitimise the therapeutic decisions that are taken for patients.

The study also found that doctors’ attitude to ADs varied according to their specialty, the calculated Average Advance Directives Support Score (based on how they responded to the 14 questions) being lower for radiation oncologists, for example.

As to what the doctors would want for themselves…they clearly, and predictably, wouldn’t want prolonged intensive treatment.

‘The majority (n = 954 or 88.3%) of the 2013 doctors opted for the Do-Not-Prolong Life (no-code status) for themselves when terminally ill. Only 11.7% of the doctors opted for the Choice-to-Prolong Life (full-code status) for themselves. Doctors who were less supportive of AD were more likely to opt for full-code for themselves…’

The final line suggests that those who would rather be resuscitated are less supportive of engaging patients in discussions on their preferences.

In the discussion the authors explore possible reasons for the disparity between doctors’ general acceptance that the intensity of treatment should be moderated when the effects of chronic, incurable disease draw patients the into the last year or months of life, and what a actually happens – which is quite different. The reasons are largely based on conjecture, and do not relate to the data presented in the paper (which I can never get away with when I try to publish papers!). They come up with 4 possible explanations –

1) Doctors have been witnesses to the undesirable burdens of treatment: ‘…it is likely that doctors recurrently witness the tremendous suffering their terminally ill patients experience as they undergo ineffective, high intensity treatments at the end of life and they (the doctors) consequentially wish to forego such treatments for themselves’

2) …but they are unrealistic when it comes to their patients’ chances: ‘…doctors tend to be very optimistic and overestimate the prognosis and life-span of their patients. This results in escalation of high burden technological interventions until it is clear to all stakeholders that the patient is dying. Sadly, this clarity often comes in the last few hours to days of life, resulting either in terminally ill patients experiencing highly medicalized death in hospitals or in very late referrals to hospice care.’

3) The system default to intensive treatment: ‘…the culture of modern biomedicine with its default set to maximal interventions for all patients, irrespective of the effectiveness of doing so. This may foster implicit biases in doctors causing them to override their patients’ autonomy when the patients’ choices are in conflict with what the doctors believe will benefit the patient.’

4) And in the US at least, money is involved: ‘…the current fiscal system rewards hospitals and doctors for medical procedures and providing high-intensity care to terminally ill persons and does not reimburse them for conducting prophylactic conversations that elicits values and goals of care and what matters most to patients and their families at the end of life.’

There is much more that could be said here. In the field of acute/general medicine doctors meet patients who would benefit from being engaged in a conversation about end of life care on a daily basis. In the UK this would not necessarily be expected to result in a detailed AD (which in my experience remain rare), but perhaps an agreement on resuscitation status and a general inclination about where they stand on prolonged organ support. Other reasons for failing to broach end of life scenarios might include:

Non-holistic focus: perhaps specialists are seeing patients as diseased bodily systems that need ‘managing’. This is age old accusation, but one that still bears scrutiny. The PLOS1 one paper includes an interesting observation in the introduction;

‘there was a twelve percentage point increase in Medicare beneficiaries who saw more than ten different physicians in the last six months of life, especially medical subspecialists…’

It may well be the narrower one’s area of specialisation, the harder it is to see the whole picture.

First contact: if you are one of those ‘ten different physicians’, it is hard to steer the conversation directly into the realms of pessimism. When seeing patients for the first time, it is natural to want to focus on the positive. It requires some confidence to be open and honest about the utility, or futility, of treatment from the outset.

Precedent: …and why did none of the previous 9 physicians bring up the subject of dying? It is quite common to meet patients who are clearly near the end of life, and who has been under other specialists, but who have never been engaged on the subject of end of life preferences. Sometimes you begin to wonder – well, if they didn’t bring it up, why should I?

A trial of therapy: because the default approach, quite rightly in medicine, is to try to prolong or preserve life, an intellectual compromise that appears to justify intensive treatment is the ‘we’ll try a period of aggressive support, but if it clearly isn’t working it may be time to discuss comfort measures’. In this way patients can easily move into an intensive medical environment, a move which sometimes acquires a momentum of its own. I have written about this is ‘5 days – a tale of escalation creep’

Finally, a question that challenges the paper’s presumption – are we really subjecting patients to treatment against their will? I don’t think so. I don’t know of any patients who have been taken to intensive care, or given chemotherapy, or undergone surgery, against their wishes. It is more likely that we are not facilitating patients in the difficult and subtle process of articulating what they truly want from the medical system into which they have entered; a system that can do just about anything, unless you say no.

 

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Don’t tell me the odds

I survived the war…the odds were long for prisoners like me, but I managed it. Luck played a part, but so did resilience, and, though it I can’t prove it, my ‘survival gene’. I won’t tell you exactly what I went through but I was in Singapore when it fell in 1942, I was captured and imprisoned, and I was starved. I saw friends and fellow soldiers swell with malnutrition, vitamin deficiencies and heart failure, and a good number fell to the ground on the building works. There was cruelty. The chances were that I would not survive, but I did.

Since that time I have dodged a few bullets: a car accident on the M1 in 1975 (‘a miracle you survived’ said the intensive care nurse when I came back to thank them for all they had done), and the bad bout of influenza in ’92 nearly did for me. I was on a ventilator for two weeks, and developed kidney failure as well. The family were brought in, and they heard that I was ‘very, very unlikely’ to survive. But I did. I’m a survivor.

So now I come to this week. I’ve not been right for months, but 5 days ago I got properly sick. It looks like the heart is catching up with me because suddenly, just like the chaps in the prison camp with wet beriberi, my legs started swelling and I got desperately short of breath. Apparently my chest x-ray shows that my heart is hugely enlarged, and after the echo test I overheard someone say that it was pumping like an old carrier bag. I get the meaning. I’ve got bad heart failure, from the fags I’m sure, and two of the valves are shot. But I’m what…born in ’24…I’m just shy of 90, I’ve done pretty well.

So one of the random doctors came along this morning and did the usual checks, crossed some things off the drug chart and added some more, then looked at me, all sensitive in the eyes, and sat on the bed. He said,

“Eric, I’d like to ask you something that you may not have thought about before.”

“Yes.”

“It’s about what we should do if your heart were to suddenly stop. If you were to have a heart attack, a cardiac arrest.”

“I know what you mean. But I haven’t thought about it.”

“As you might know, we often call the emergency team to try to restart hearts with chest compressions or electric shocks, but we have to be sure that there is a good chance that it will work. Sometimes, if the heart is already very weak, the chance of it working is very small indeed, and the damage that those attempts can do is quite significant.”

“So what are you saying?”

“Well, in your case, I don’t think it would be a good idea. We know your heart has become very weak over the last few years, without you knowing it, and if it were to stop – and I’m not anticipating that it will, you’re quite stable – the chance of getting it going again, strongly enough for you wake up and be close to how you are now, is unlikely.”

“How unlikely?”

“I can’t give you a definite number.”

“Don’t they know?”

“Well, I did read a study that found for every 30 people in their nineties who were resuscitated only 1 left the hospital. But everyone is different, it’s a decision that needs to be made on an individual basis.”

“But from where you’re standing the odds are bad.”

“Yes.”

I really hadn’t considered all this before. Perhaps I should have. You see, I enjoy my life, and I have confidence in my ability to survive. I’ve proven it, after all, time and again. But yes, I am older now, the floppy bag in my chest is on its last set of batteries, so I suppose I need to listen. But I wasn’t prepared to say – ‘OK, mark me down for no resuscitation.’ I’m sure it’s awful, being compressed and shocked, I’m sure the machines you have to go on are uncomfortable, but I’ve had worse. They way he spoke, I’m not sure he’ll agree to put me down for resuscitation anyway, it sounds like it’s his decision. But he did ask me. Didn’t he? Or did he tell me. I don’t know. So I’ve left it for now. I want to think about it.

 

The doctor sits in the canteen with his team. His junior colleague asks,

“So, the old chap with the bad heart. Do I do a DNAR form?”

The senior doctor replies,

“Tricky, tricky. In my opinion he has next to zero chance of surviving a crash call. I made that pretty clear didn’t I, within the bounds of compassion.”

“I think so.”

“Would you give chemotherapy to a cancer patient if there was, say, a 2% chance of it working?”

“No, of course not.”

“In fact, you wouldn’t even discuss it. It wouldn’t be on the agenda. So you could argue, why are we even discussing resuscitation with this man? Statistically, medically, it’s an irrelevance. It won’t work.”

“You don’t know that. And you’re talking about the end of his life. The moment of death. He’s bound to have an opinion. You didn’t say it was guaranteed not to work.”

“Trust me, it won’t. He might get a pulse back but he wouldn’t get off inotropes afterwards. And his kidneys are already working at 20% capacity. They will fail too. And will intensive care take him? No. If he stays for resus we’re holding out a false hope. It’s dishonest.”

“So I should do the form shouldn’t I? It’s the weekend, we can’t leave it.”

“I’ll need to go back to him, see if he agrees. He wanted more time, so be it.”

 

Back on the ward.

“Hello again Eric.”

“Hello.”

“I wondered if you had thought any more about our conversation.”

He sat down again, carefully addressed the subject. He made a good case. And you know what I said? Well, I didn’t say much. I didn’t have the energy. I couldn’t be bothered to tell this doctor about my scrapes with death, about the commitment I made to myself back in ’42 never to give in, never to accept fate without a fight…because that’s what got me through it, and that’s what got me off the ventilator in ’92. It was survivability. I’m still the same man, mentally, if not physically. Call me stubborn, but his statistics don’t apply to me. I’ve proved that. I’m going for it.

 

The doctors’ mess

“Did he agree?” asks the junior.

“No.”

“What do we do?”

“Respect it.”

“It’s crazy…it’s not the right decision?”

“Well I’m not signing it.”

“I’ll talk to him some more. Do you mind if I try?”

“And coerce him?”

“Persuade him.”

“He’s made up his mind. It’s not a rational thing. It’s about not letting go of 90 years of life without an argument. I understand it. I don’t agree, but I understand.”

“And if he arrests, we’ll look pretty silly, leaving a 90 year old with severe heart disease for resuscitation.”

“So be it.”

 

fall of singapore painting

 

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5 days: a tale of escalation creep

escalation

Day 1 A 90 year old lady, Mrs V, is admitted to hospital with symptoms of pneumonia. She was managing at home 6 months ago but has become increasingly dependent on her family; the plan was to employ or arrange carers soon. She always said she never wanted strangers around – the words ‘fiercely independent’ are used a lot. She saw her husband die on an intensive care five years ago – it was very unpleasant, and her son makes it clear from the outset that she would never want to be put on a ventilator. Treatment begins, and her son actively engages the consultant in a DNAR conversation during the post-take ward round. All are agreed she should not be subjected to it should her heart stop. But the consultant explains that the pneumonia is not that severe, and says she is optimistic that Mrs V will improve. The son was due to go on a business trip for three days – he asks if that is wise. The consultant says,

“Well, nothing is ever certain, but her oxygen levels are not too bad, and she has no other illnesses. I can’t tell you what you should do, but she doesn’t seem to be in imminent danger.”

He leaves.

Day 2: Mrs V appears confused to the registrar who does the daily ward round. He notes that her oxygen level is borderline. The oxygen flow is turned up, the level improves. But later that day it dips again (saturation 83% on an oxygen mask). The registrar calls the consultant,

“I was thinking about some non-invasive ventilation on the medical HDU.”

“That would be reasonable. Her son was keen not to medicalise too much…”

“I think she just needs a couple of days of support.”

“I agree. She was pretty good before, the antibiotics haven’t really kicked in yet. Any positive microbiology?”

“Streptococcal antigen positive.”

“Ah. Well at least we know. But it could be aggressive. I’m happy for you to arrange transfer.”

Day 3: Mrs V has spent the night on a tight fitting mask which allows oxygen to enter the lungs under pressure. She struggles with the mask periodically, but settles eventually. Her oxygen levels are better, but she is still confused. The team put this down to delirium, an acute confusional state. A blood sample is drawn from the wrist, and it shows that her carbon dioxide levels have risen. The HDU nurse asks if the team could arrange an arterial line, a cannula inserted into the radial (wrist) artery, to allow more frequent blood sampling. This will avoid repeated needles. The registrar agrees, the SHO volunteers. He can feel the artery easily, and is confident. The ward round moves on and the SHO stays behind, but 40 minutes later he calls the registrar.

“I couldn’t get it in.”

“How many attempts?”

“Just three…but it bled and she has a big bruise.”

“Leave it for now. I’ll do it.”

Day 4: The consultant does a ward round in the morning.

“How come she’s got a nasogastric tube?” she asks of the charge nurse.

“She was sick overnight. Her stomach filled with gas because of the positive pressure. She’s a lot more comfortable now.”

“Is she eating?”

“Not much. She has some sips during breaks off the mask.”

The team look at the arterial blood sample results. Gradually, with the eye of faith, the respiratory failure is improving. Mrs V cries out. She has pleurisy, intense pain at the edge of the lungs. Simple pain killers are not enough, and she is prescribed morphine. As the consultant walks away she notices the urinary catheter bag hanging from a stand.

“Why the catheter?” she asks. The charge nurse replies,

“She couldn’t manage with the commode, not on the mask. She’s high risk for pressure sores. We put it in yesterday.”

Day 5: Mrs V deteriorates. A repeat x-ray shows that the pneumonia has spread further through the right lung. The registrar calls the consultant.

“I’ve got quite a bad feeling about her now. I think her age is beginning to tell, I know she didn’t have any other illnesses but…”

“You’re right. Once things begin to go downhill it’s hard to see her getting better.”

“I understand her son didn’t want her to go to intensive care.”

“I don’t think they would take her to be honest. But yes, he told me that she wouldn’t want that. In fact he needs to know what’s going on. He’s supposed to be coming back today.”

“The nurse called him this morning. He arrived back in the country in the early hours apparently. He’s on his way in.”

“I’ll speak to him. We need to discuss de-escalation.”

At 2pm her son arrives on the ward. He finds his mother lying on her bed, barely conscious now. She is muttering words but he cannot understand them. A monitor pings and alarms insistently above her head. Trailing from her body are a urinary catheter, an arterial line transducer, two intravenous infusion lines and the wide oxygen tube attached to the mask at her face. The air and oxygen in the mask whistles. Cardiac monitoring leads trail out of her gown into the machine that is alarming. He sees the bruise on her forearm that has now developed into a 4-inch haematoma that sits proud to the skin. He pushes the curtain aside, tears in his eyes, storms out of the cubicle and shouts in the direction of the nurses’ station,

WHO DID THIS? SHE NEVER WANTED THIS!”

She dies later in the day, the mask having been removed and the monitor having been turned off. Six weeks later her son writes to complain about the inappropriate, overly intensive treatment to which she was subjected during her final illness.

What happened here?

*

I wrote this to explain how, as the cliché goes, the ‘road to hell is paved with good intentions’. Looking back, Mrs V’s treatment seems misguided. How could her consultant have allowed a frail 90 year old lady with (what proved to be) severe pneumonia undergo multiple, potentially painful and distressing procedures to no avail? Didn’t she hear the son when he explained how Mrs V had witnessed her husband undergo a similar ordeal? Why didn’t she put a brake on the system and stop the medical rollercoaster in its tracks?

But then, let’s go back to beginning and follow these events step by step. The infection didn’t look that bad at the beginning, there was little reason to expect Mrs V’s death. So, when Mrs V’s oxygen levels fell, a judgment was made that a short period of assisted ventilation would help. But then, to avoid repeated blood tests, an arterial line was required – a procedure that proved harder than it looked. The gastric tube had to be passed, the nurses couldn’t just stand by as her stomach filled with gas. The catheter was routine. Every step was justified.

How could this have been avoided? Well, if the son had been there every day he may have called a halt to things, but I’m not sure he would have felt able to question each procedure in the face of enthusiasm and almost routine pattern following on the part of junior doctors and nurses. So to stop this we need to go back further…to the initial conversation. It needed to focus on the ‘ceiling of care’.

Perhaps the consultant should have made a decision, in discussion with the son, that whatever happened Mrs V would remain on the basic medical ward…even if she deteriorated. In that way there would be no danger of being prescribed the mask, and no danger of having to endure the paraphernalia that can goes with it. The son would have returned (perhaps a day or too earlier if he had been contacted about the deterioration) to find his mother being treated on the original ward, in relative comfort. Knowing how things turned out in the end, that decision would have been right. But no-one knew how things were going to go. The consultant thought there was a chance of survival. She decided that the burden of treatment was reasonable in this case, despite the caution that the patient’s son had expressed. She made the wrong call.

I have no right answer here. I wish only to highlight that, as Soren Kierkegaard said, ‘Life can only be understood backwards; but it must be lived forwards.’

The case description is entirely fictional.

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Futility redux, and reset

The futility debate has had its day, hasn’t it? At its height between during the 1980’s and late 1990’s there were hundreds of publications on the subject, but a NEJM ‘sounding board’ article by Helft et al, ‘The rise and fall of the futility movement appeared to bring it to a natural end. The authors explored definitions, data, the importance of patients’ autonomy versus physicians’ autonomy, and attempts to resolve disputes. They described how there had been,

…an attempt to convince society that physicians could use their clinical judgment or epidemiologic skills to determine whether a particular treatment would be futile in a particular clinical situation.

In their conclusion, where the authors sought to explain why interest in the idea of futility had dwindled, they pointed out that the medical community,

…could not agree on underlying principles…there was no consensus on a specific definition of futility or on an empirical basis for deciding that further care would be futile. Those who argued that the critical issue was autonomy could not agree on whether patients or physicians should have the final say.

Doctor-centric exercises in calculation appeared at odds with the need to take into account the views of patients or their representatives. The right decision always depends on communication and a mutual understanding of burdens and benefits, so purely objective estimates of futility appeared bound to fail. The paper ends with,

The judgment that further treatment would be futile is not a conclusion – a signal that care should cease; instead, it should initiate the difficult task of discussing the situation with the patient…Talking to patients and their families should remain the focus of our efforts.

That does not sound alien to anyone who practises in a patient-centred way. Nevertheless, futility is a word that continues to be used in every hospital, every day of the week. It remains relevent because no doctor wants to advocate treatment that is useless. Futility remains important. Yet, in the absence of definitions we continue to make qualitative assessments.

In the rest of this article I would like to explore what factors influence doctors’ perception of futility?

Changing the guard

An intensive care consultant once explained to me that frequent rotations with his colleagues through the unit minimized the risk not only of fatigue, but of ‘therapeutic boredom’. He meant that after a week of trying to improve patients who were barely able to stand still, he began to run out of ideas. He grew weary of the grinding, entropic drift towards death that no amount of physiological tinkering or pharmacological manipulation could reverse. The only remaining option, to withdraw, grew more and more reasonable. But come Monday a new consultant with a fresh pair of eyes and, perhaps, a new idea, might change tactics and bring about some improvement. It struck me that in this environment, a rarified and unusual one I admit, a physician’s personal definition of futility was hugely significant. But for the patient it was a definition that could change overnight. Surely, I reflected, matters of life and death should not be altered by the psychological state of the doctor in charge. But of course, they do.

The language of futility

Apparently small chances of survival can be interpreted in different ways, according to whether the doctor or the patient/family have a positive or negative overall ‘feeling’. That feeling may be determined by previous experience with a patient. Here I imagine two scenarios* with an estimated 5% survival probability. In scenario A the brother of a socially isolated, middle aged woman with decompensated cirrhosis feels strongly that organ support should not be continued, in contrast to the view of her doctors who feel there are reversible factors worth treating aggressively. In scenario B a man with cirrhosis who has deteriorated several times before is once again admitted to ICU. The doctor feels that ongoing support is not justified, but his son demands that they do not give up. The 5% number is invoked, although there is of course no way that the accuracy of this can be proven. It is quite common for such numbers to be brought up as an easily understood ‘handle’ by which families can grasp the situation. It’s something I tend to avoid nowadays.

Scenario A

The female patient’s (pessimistic) brother: Isn’t it all futile? Five per cent your colleague said, when she was admitted. One in twenty. It’s not a figure to put much hope in, is it? “Fifty-fifty” would sound bad enough.

Doctor: I suspect my colleague wished to impress on you how very ill she was, not to rob you of all hope. But she has survived the first 48 hours. The next few days will be crucial in telling us if she can get through this, depending on how her heart, lungs and kidneys respond.

Brother: And if she shows no signs of improvement, what will you do? Turn off the machines?

Doctor: We may limit the amount of life support and submit to the natural process. The nurses would know that she was dying, and would not call for doctors to give electric shocks or more drugs if her heart slows down and stops. It would be as peaceful as possible. But should we see positive changes, we must give her as much support as she needs, so that those improvements can be built on.

Brother: What positive changes? Less of the blood pressure drug, less oxygen? In my mind those changes would mean very little; she would still be needing the ventilator, she would still be on life support, covered in wires, knocked out, totally dependent. But you will detect signs of improvement, and the process will go on and on.

Doctor: It would not go on indefinitely. She, her body, will tell us if indeed the time has come to die, and we will not strive to reverse the inevitable.

Brother: But isn’t it obvious already? Do you really believe she has a chance…or are you saying these things because you are trained to be positive, to treat, treat, treat? You take her 5 per cent chance and channel all your efforts into it, all the heroic potential of modern medicine. For a child, for a 30, 40-year-old struck down by a heart at- tack, meningitis, leukaemia, yes, but for my sister, so weak, ruined by her addiction … it doesn’t seem right.

Scenario B

The ‘end stage’ patient’ s son: But your colleague spoke of a 5 per cent chance, 1 in 20. So his illness can be reversed, one in every 20 cases. It seems a good enough chance to try for. Or was your colleague being optimistic?

Doctor: I always try to avoid quoting numbers, they don’t mean much in individual cases. I’m not saying that some recovery from this infection is impossible, but even if the other organs begin to function his liver will have deteriorated further in the meantime. He will remain on the ward, permanently confused I should think, just as he has been since his last infection…

Son: He recognized us on the ward. He smiled when he heard my voice.

Doctor: That’s good, but please understand me, I’m describing what he might be, should he have the energy and luck to grab that 5 per cent chance. But I do not think he will be able to take that chance.

Son: But surely you are trained, if not obliged, to concentrate on that small percentage. If you can get him through this … and if he remains stable on the ward, he can go on the transplant list again, get a new liver, and live another 5, 10, 15 years. The alternative is so good, shouldn’t you try your hardest to make it happen?

We see the same statistic presented in two ways; for the female patient with the pessimistic brother 5% is worth fighting for…yet the same doctor tries to convince the male patient’s son that he is concentrating too fixedly on that ‘1 in 20’ chance. Ultimately, the doctor devalues the statistic entirely by resorting to a deterministic outlook – ‘ ..five out of 100 people in his situation might survive, but for him, as an individual, fate may already be decided’. Interpretation is physician dependent.

Divorcing statistics from individuals

As scientists we are trained to read papers and absorb numerical evidence, but, strangely, there is also a duty to disregard data as we approach individual patients. The mystery of numbers when applied to medicine is one on which a statistician can shed more light that me. In ‘Where is the Individual in Statistics?’, Linda Tickle-Degnen dwells on standard deviations and how to discern individual variability in large analyses. Fascinatingly, she quotes Stephen J Gould (the famous paleantologist and science communicator) who was diagnosed with abdominal mesothelioma in 1982:

‘I am not a measure of central tendency, either mean or median. I am one single human being with mesothelioma, and I want a best assessment of my own chances—for I have personal decisions to make, and my business cannot be dictated by abstract averages. I need to place myself in the most probable region of the variation based upon particulars of my own case; I must not simply assume that my personal fate will correspond to some measure of central tendency.’

In 2003 Gawain Shelford, a doctor, wrote about his own relationship with statistics (BMJ – £) after being diagnosed with rectal cancer at the age of 39. He wrote in bold italics,

‘The information that I want is not that 1 in 10 patients will benefit, but whether I am that one…’

and asked if we,

haven’t all been bamboozled into believing that statistics and evidence are really relevant in our care of the individual patient. We repeatedly advise patients as to the best treatments for their illness, or for preventing illness, without pointing out that we have no true idea as to whether the treatment will in fact benefit them as an individual.’

Experience and nihilism

So, statistics shouldn’t necessarily drive day to day medical decision making. That’s easy to absorb….they derive from large studies that appear abstract and meaningless outside our personal experience. But we are still busy compiling a personal database, one which will hold great power over us. Those who work with critically ill patients month after month, year after year, are bound to review (consciously or subconsciously) their own accumulated experience. We learn the lessons of our past efforts, and believe the results of those often rather qualitative calculations more than those that those they read about in papers. Such a personal approach was condoned by Lawrence Schniederman et al in their 1990 Annals of Internal Medicine paper, ‘Medical futility: it’s meaning and ethical implications’,

…we propose that when physicians conclude (either through personal experience, experiences shared with colleagues, or consideration of reported empiric data) that in the last 100 cases, a medical treatment has been useless, they should regard that treatment as futile.

But does such a steady accumulation of face-to-face encounters risk the development of bias? Perhaps an extended, bad run will skew the tone and result in a jaded view. The world-weary attitude we sometimes see in more senior doctors may reflect a career’s worth of exposure to poor results in certain conditions. Where once they threw everything at particular patients in the hope that through modern medical techniques and drugs they could drag their patients into the small percentage who might do well, later on they submit to the inevitable. They pick their therapeutic battles in a highly selective way. In doing so they would contend that they protect patients and their families from false hope, needless interventions, pain that is divorced from the reward of a longer life…from futility. But we must beware the self-fulfilling prophecy. If, despite a history of failure, there remains a real, albeit small chance of survival, taking a conservative approach may actually guarantee that the chance is zero.

Optics and caring

The continuation of manifestly futile treatment was described in a New York Times article in 2010. A dying 2 year old with severe congenital abnormalities underwent a resuscitation attempt, apparently for the benefit of his of her parents. The physician’s approach to futility was criticized because it seemed that his duty of care had transferred to the parents, who left the hospital ‘with a feeling of wholeness’. Neonatology and paediatrics are very special in terms of the way the family unit is managed, but in adult medicine there are parallels to this case…where appearances become the focus, even after futility criteria have been met.

Imagine a young man who has hitherto been doing well during his treatment for, say, leukaemia – potentially curable. He develops a severe infection with associated multiple organ failure following a course of chemotherapy. Organ support is continued well beyond the point at which the medical team have accepted, internally perhaps, the survival is impossible. But it is accepted that treatment will continue until his heart stops – why? The detailed logistics of how organ support technologies are withdrawn requires great skill and sensitivity. Treatment that is quite futile may be carried on until family members have arrived to say their final farewells. And on some occasions, in our imagined scenario for instance, I wonder if the decision not to actively withdraw is less a symbol designed to comfort the family, more the fulfilment of a promise to the man himself. To maintain a commitment not to ‘give up’. He and his team made a pact at the outset, to go through thick and thin. There may be a stage in treatment therefore, where the chances of success have dwindled to well within the margin of futility, but in circumstances where it has been understood that it will be the patient who gives the final signal for release (by dying, by the heart actually stopping) rather than the physician. The decision, to withdraw, is never made. The doctor allows futile to continue, confident that it is not causing harm, but knowing that it can do no good.

No wonder the medical community never agreed on the criteria for futility. But as Löfmark and Nilstun proposed in their Journal of Medical Ethics review ‘Conditions and consequences of medical futility—from a literature review to a clinical model’,

‘the following two questions should always be separated in the clinical setting: “What may be regarded as a futile measure?” and “What is justified in futility situations?”

The question is not what is futile, but how to deal with that futility.

Reset

This exploration of the subject of futility has made me pause. I’m sure most doctors would admit to developing nihilistic tendencies is some areas. Areas in which we have less knowledge perhaps, areas in which we have less interest. Perhaps, now and again, it is necessary to step back, clear our minds of the vivid, negative examples from our recent past, overlook the statistics that cannot be applied to the individual, remind ourselves that the patient’s prognosis should not depend on our state of mind…and reset.

Note:

* I used these dialogues in a 2008 paper called ‘Sophistry and circumstance at the end of life’ (Communication and Medicine)