Month: February 2017

The unknown quantity

What determines if and when patients ‘turn the corner’? I have never understood.

In my world of acute-on-chronic disease, where patients suffer sudden and life threatening reverses, there are numerous stories of unexpected turnarounds. Our efforts to prognosticate accurately have led to many scoring systems, all of which have been ‘validated’, but when applied to individual patients who surprise you with twists and turns, their relevance appears diminished. However bad the numbers, we treat, we support, we try to save… unless the presentation comes at the end of a long and well recognised decline, and we (the patient, the family, the team) are thoroughly ‘signed up’ to palliation. That circumstance remains a rare one, despite the increasing value we give to conversations about death.

So we are guided by experience – that fickle teacher.

Last year a very sick patient came in. He struggled, we struggled; he responded to intensive care support, we felt satisfied that our decision to advocate for aggressive treatment was the right one. He deteriorated, we isolated the infection. We talked the family through it, and suggested that not give up yet. He fluctuated, weakening a little with each reverse, until… weeks later, he died. All that hope. All that work. The ‘numbers’, at one stage, had looked better. But that is the nature of the disease. Unexpected complications. Hidden infections. Sudden ruptures.

The grim picture joined the file of failures that I, and all doctors, compile in their memories from day 1. It is called experience. But the way such memories absorb the light colours our view of the present. That is the whole point of experience, of course; to change the way we approach similar circumstances in the future.

The shapes and lines of that patient’s clinical course remained etched in my mind when, months later, I recognised an almost identical scenario. Her liver function looked the same during the first week. Her slide into an intensive care bed occurred over similar interval. I was ‘guarded’ in my prognosis, but I knew what was going to happen here. I knew. The road home presented too many traps and potholes for her body to negotiate, given the advanced nature of her disease. Any and each of them could kill her in a few hours. As time passed, her clinical course described the usual sinusoidal curve. The downslopes were not catastrophic enough to justify withdrawal, and the upward gradients were not sufficiently sustained to launch a bid for convalescence.

We reacted to each complication with urgency. Our policy was unchanged – treat, support, save. But my heart was not really in it. I did not have hope. I know I communicated that to trainees. Those muttered opinions as we walked out of intensive care. But at no point did we hesitate or withhold. And time passed.

Until… she returned to the ward. She turned the corner. She had climbed far enough up the hill for the swirling, sucking mists of death to no longer have a hold on her. Then she went home.

A trainee asked, “You know _____? I thought you said the chances of her surviving were…” I stopped her there, and turned the case into a occasion to teach on the subject of uncertainty. 

Is it a ‘survival gene’? Poor science. Then what? We do not know. Probably, luck is involved. When such large unknowns are involved, when the rules that underlie our attempted predictions appear unfixed, pattern recognition can lead to erroneous conclusions. Sometimes it’s better just to treat, support, stand back, and try not to outthink the disease… hoping that they turn the corner.

 

See also, Patterns and pride: diary of a medical anecdote

 

 

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When atheist doctors meet God’s will

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Michelangelo’s Pietà, detail

It’s not often that patients near the end of life, or their relatives, invoke ‘God’s will’, but it does happen. When it does, the atheist doctor has a challenge. They ‘know’ that God does not exist, but must use words and arrive at decisions that take the patient’s religious convictions into account. This is not so hard, at the superficial level. They will ensure that the patient is offered spiritual support; they will tailor care to the patient’s goals and preferences; but they will never accept that their course is being observed or manipulated by a higher being. Perhaps it doesn’t really matter – as long as the right decisions are made, the difference in belief remains irrelevant.

When faced with a seriously ill patient (or more commonly their relatives) with an overtly religious perspective, I am respectful, but deflect the conversation to medical practicalities. This personal observation is borne out by previous studies. An analysis of 249 goals-of-care conversations, between 651 ‘surrogate decision makers’ and 441 health care professionals found that religion was brought up in only 40 cases (16.1%), despite 77.6% of the discussants saying that religion was a prominent consideration (Ernecoff et al, 2015). In only 8 of those conversations, ‘did health care professionals attempt to further understand surrogates’ beliefs, for example, by asking questions about the patient’s religion.’ A good proportion of doctors ‘redirected the conversation to medical considerations’.

The infrequency with which religion enters the room is surprising, given that religion serves as a great support in times of pain, distress or fear. Perhaps, confronted by the technical complexity of modern healthcare, and in environments that are not conducive to opening up their deepest, oldest beliefs, religion is left where is spends most of its time, within the private sphere.

However, faith definitely does influence decision-making. The Ethicatt study showed that ‘religiosity’ correlates with a tendency to request more medical interventions, and for longer (Bülow et al, 2012). Commenting on North American population, Maisha Robinson (2016) describes how religious ‘African Americans are more likely than Caucasians to choose life-sustaining treatment at the end of life—even if the burden of treatment outweighs the potential, limited benefits.’ It is necessary then, to have some knowledge of religious background even if it is not revealed during initial discussions. Palliative care teams are very good at actively seeking this information; those working in other specialties may be less proactive.

If an atheist doctor concludes that continued active treatment is no longer appropriate, how does she challenge a family’s preference without being seen to criticise their spiritual beliefs? This is very dicey ground, and one that most doctors choose to step away from. If the relatives’ opinion is based on their knowledge and greater understanding of the patient, who is the doctor to question the spiritual foundation on which that preference is based? Of course, she does not that. Instead, she restricts herself to medical matters. She ‘redirects’, as in the Ernecoff paper. In the Ethicatt study ‘eighty percent of respondents stated that they would try to convince a patient against treatment if they thought that treatment was futile’. It is common then, to challenge preferences that would prolong life without bringing benefit, even when those preferences are based in a heightened concern for life’s sanctity.

What are the words? If a relative says something along the lines of ‘we should let God decide,’ the doctor might explain that ‘we have been trying for three weeks, and the only reason your mother is alive is because of the life support machines. If there was going to be an improvement, we would have seen it by now.’ This avoids direct reference to God, but could be paraphrased as, ‘it is technology, not God, that has sustained your mother these last few weeks, and it is clear that no higher power has intervened to reverse the underlying disease.’ To say this would be offensive and unkind, but for the atheist who is reviewing a medical complex scenario from a causative perspective, no other conclusion can be drawn.

As doctors with our own views and beliefs (on non-beliefs), we are not trained to engage on theological or spiritual issues. Coincidentally, an example of faith sensitive therapy for depression is being widely reported in the media today – whereby a form of CBT called behavioural activation is linked to Islamic belief systems. Therapists involved in this service must be comfortable with faith based conversations – whether they need to believe or not is a more intricate question. Obversely, health care professionals have been disciplined for offering to pray for patients. How faith intertwines with health, fear (of dying), hope and nature’s sometimes cruel caprice is too subtle an analysis for us to undertake. It’s not revolutionary, but the message I take away is that doctors without faith must remain respectful, while adhering to what they feel, or know, is in the patient’s best interests while they lie in this visible, tangible realm.

 

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New collection, Vol IV – click image to see on Amazon

The gentle fiction

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‘Through rose tinted spectacles’, by monstercoach

 

This time I was going to give the hard news. That was my agenda. He had been in out of hospital a few times, his cognitive and physical status fluctuating due to the underlying condition. There was no cure. So in they came to the clinic, husband and wife, beyond middle age but not yet elderly. I got into it quickly,

“So… the last few months, I’ve noticed, you’ve got weaker every time you’ve come in. The complications have been more difficult to get over. At home… you’re not getting out…”

He said nothing. Perhaps today was an off day, mentally.

“So we need to think about the future. What should we do next time you come in. And if you get really ill, an infection, or…”

His wife shifted in her seat.

I went on, using words I have used many times. About how there was only so much we could do if he deteriorated. About the possibility of spending his last days or weeks at home, if it looked like he might be dying. About things that might happen suddenly. Uncomfortable considerations, but necessary.

“But doctor, he’s doing OK really, isn’t he?”

What? Where was this coming from? I moved by gaze from the patient to his wife. She was winking at me. A classic, conspiratorial wink. No, I would not have this….

“Well, it’s important that we are very clear, and honest, about what we have seen over the last year. It’s been a downward trend…”

“But at the moment, he’s stable isn’t he? He’s alright.”

I looked at him. He was looking at her.

“Don’t want to hear any bad news, do we?” she said.

“No. No. There’s enough to worry about in the world…” he replied, laughing quietly.

I paused. The signals were clear. This was not the time to push it. So I changed tack.

“Well,” I continued, “To be fair, you haven’t been in for two months now. The new drug we gave you for the confusion seems to be working. And…” I turned to the computer, “Looking at your numbers, your blood tests, there hasn’t been much change there either. So yes, pretty stable!” I was getting into it now. The conspiracy of optimism. He needed this –  this gentle fiction.

We wrapped things up. I had achieved nothing definite in terms of anticipating how to handle future crises. We would have to see how it went. So much for my agenda. Perhaps that was the problem, developing an agenda in isolation.

“Back in two months then?” I suggested, “Unless you have to come in earlier.”

They walked out. There would be another time. Or, more likely, the hard truths although fully understood, would remain unsaid until the very end.

 

(Details changed)

 

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Collected posts, Vol IV – click on image to view in Amazon

Curators of compassion

e_radiation_01bb_bm-copy_905Mechanical medic, by Ben Mauro (concept art for the film Elysium)

 

 

“When I was hospitalized for multiple cancer surgeries, it was my #nurses who provided the compassion many of my doctors lacked.” – a Tweet I saw this week.

 

Why is this? Do doctors not care?

 

The question was brought into focus by two things recently. A nurse consultant reminded me, after a talk I had given on the difficulties in finding time to understand the personal histories of alcohol dependent patients, that it’s not all about the doctors. Their job, if they are personally unable to sit down and explore what makes people tick, is to ensure that others do. They need to manage the service such that qualified and skilled people are around, like specialist nurses. This seems self-evident, but it reveals a truth. Doctors, especially consultants, are not necessarily best placed to act as the conduit of compassion or understanding. They are there to make the right medical decisions, to prioritise aspects of care (according to the patient’s needs and goals, obviously), and to help keep the whole team functioning. But, frequently, it is not they who are the face of kindness.

 

The second reminder I had was a very lovely thank you letter from a patient who needed an operation, and who was in pain every day, but did not tick the usual boxes for jumping up the waiting list. I helped to nudge and negotiate the bureaucracy such that her operation was brought forward, although it was by no means a single handed effort. Once on the ward I barely saw her. Her daily struggles were dealt with by trainees and nurses. Yet, when it was all done and she felt better, she wrote to me praising the whole team for our caring attitude. Some of this warmth reflected onto me, as the senior clinician. Yet I know I did not have the opportunity to show compassion, personally. All I did was organise stuff. That contributed to the positive outcome, and the perception of compassion.

 

As a consultant, you must get used to not being on the ward to demonstrate those human qualities that helped drive you to become a doctor in the first place. Depending on the job structure, you might go round the wards every day for a week, and have the opportunity to develop a rapport with patients. But then, when connections has been established, you disappear, into the land of clinics or other duties. The patients, who grew to know you and recognise your face, must now establish new connections. Or, you may do ward rounds in a more old fashioned model, making executive decisions, giving direction to the team, but only twice a week (a vanishing arrangement!). In that model your window for demonstrating compassion is very brief. You might try to pack all of your caring and empathic instincts into an interview with the patient, trying to achieve a good understanding of what needs to be done (especially important, say, a dying patient), but then… you are gone. You delegate the implementation and ongoing communication of the plan to the team. If there are problems, they will negotiate the hurdles and come back to you if they are insurmountable. That is delegation, a necessary art.

 

You may go off to do some other things, of no less value – perhaps administrative, managerial, educational or academic, but not ‘patient-facing’. Overall, that non-clinical work will contribute to better care, perhaps even a more compassionate system (the result say, of making a business case for more trainees), but it must be accepted that seniority is likely, over time, to reduce your role as a direct conduit of compassion.

 

So, if patients being discharged reflect that they ‘barely ever saw’ their consultant, it is worth remembering that their care was supervised and overseen by them, and that the (haughty? – never) individual who floated through the ward once or twice was once, possibly, quite good at sitting by the bedside and making the time to understand. Possibly.

 

 

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New collection, Volume IV, click to explore on Amazon