Palliative care tradeoffs

Is life so precious that any number of painful, lonely, frightened deaths is acceptable to preserve one life?

As a child, I competed with my siblings to see who could hold their breath the longest. I remember the increasingly desperate need to draw a breath as time slowed in proportion to discomfort. The idea that units of time are constant is made absurd when you need to breathe and can’t. It is almost painful. Then there is the sweet, instant relief as you give up. The spent air is forced out, and a lungful of fresh air is gulped in. The whole thing is followed by raucous laughter and calls for another round.

Wouldn’t it be grand if people dying from COVID could just laugh it off as they draw the next sweet breath of air? Immediate salvation from death by hypoxia. Families around the world prayed for those easy breaths as they bundle loved ones into cars, tuk-tuks, and rickshaws in a desperate search for air—and care. On arrival at a hospital, staff had to make a quick decision. With limited resources, they had to choose who would be left to die.

I was told of one hospital where the “not to be treated” were seated in a circle with a single oxygen mask to share between them. They handed the mask from one to the other until, like the ten green bottles, one by one, they dropped out of the round. A colleague’s mother gasped her last breath seated in that circle. In other hospitals, the COVID patients died supine and alone on cots and floors tucked away from the urgent task of saving lives.

I have spent two nights of my adult life taking one careful breath at a time. Asthma. I very rarely have it, and when I do, it is environmentally triggered. On the last occasion, it was 11pm. We were six weeks into the pandemic, and I was alone in my flat in Dhaka. Breathing had become work. Tiring work. I remember skipping breaths because it was restful. Although I was worried, arriving with breathing difficulties at the A&E  of a panic-stricken hospital seemed a bad idea. With judicious and relatively frequent use of a salbutamol inhaler, the worst of it only lasted a handful of hours before I settled into modest discomfort and sleep.

It is a poor analogy, and I cannot really imagine the feeling of dying from COVID. It did get me thinking, however. What tradeoffs should be made to provide decent palliative care for those COVID patients who are dying?

The standard triage arrangement in hospitals prioritises patients according to the severity of the condition and treats the most severe cases first. If you are waiting to treated for a broken arm and someone is rushed in with myocardial infarction (MI). The MI wins, at least in terms of the immediate allocation of resources. And this will be true, even if the MI patient is highly unlikely to survive. No one dies because of the choice to treat the worst-off first. This is in sharp contrast to battlefield triage (or triage in humanitarian emergencies), where resources are severely limited. The choice to treat the most severe cases will condemn others, who have greater chances of survival, to a needless death. Battlefield triage will put some critical patients beyond care, focusing resources on lives that can be saved.

For many doctors, the COVID pandemic was their first experience of battlefield triage. At its worst, the situation meant there was not enough oxygen, ventilators, personal protective equipment, or staff.

Given two patients who will die without treatment and only enough resources to treat one patient, who should be treated? One patient is over 80 and has multiple co-morbidities; the other patient is under 30 and has no co-morbidities. The patient under 30 would win that lottery for (potentially) live-saving care.

But what of our over-80 patient (Sarah)? Does she warrant any resources? Does she deserve any clinical management and care even though her death is inevitable? Without any healthcare resources, she will die alone, distressed and in discomfort over the next 24 hours. If the situation is particularly dire—as it was during periods of the pandemic when patient waves crashed against the hospitals’ doors—even giving staff time to Sarah will endanger other lives that could be saved.

I am setting up a tradeoff. Tradeoffs have been used extensively to identify people’s preferences for different health states. The classic tradeoff is the time tradeoff (TTO). It is used in clinical research (and patient management) to identify preferences between the length of life and quality of life. The TTO might look something like this.

Imagine you have 10 years of life left with chronic obstructive pulmonary disease (COPD). You could trade those 10 years of life with COPD for fewer years of life in perfect health. How many years of life in perfect health would be equivalent to 10 years with COPD?

If you would not give up any years of life with COPD to live in perfect health, you are saying that you have no preference for a life with COPD over a life in perfect health. They are equivalent with respect to time. The example I give here is bare-bones. Numerous variations of the TTO have been developed to estimate preferences for different health states. Another tradeoff, the person tradeoff (PTO), was created to evaluate the severity of various disease states. The flavour of the PTO is given in the following, and I will stick with COPD for consistency.

Imagine you could choose (A) to extend the lives of 1,000 healthy people by one year, or you could choose (B) to extend the lives of N people with COPD by one year. How many lives of people with COPD would you need to extend for one year to choose B over A?

Suppose you would not tradeoff any lives (that is, 1,000 healthy people living for an extra year is equivalent to 1,000 people with COPD living for an additional year). In that case, you are saying (at least within the calculus of the PTO) that you have no preference for a life with COPD over life in perfect health.

These tradeoffs are all focused on the valuation of years of life. In the TTO it is explicit because you are changing the amount of time that a single life is lived. In the PTO, it is implicit. You are not asked to vary the time of a single life. You are nonetheless trading years of life: 1,000 person-years in perfect health is equivalent to how many person-years with COPD?

The tradeoff I am proposing for palliative care (explicitly terminal care) is somewhat different. In the TTO and the PTO, you are trading things of an equivalent nature—time or person-years. In the scenario of palliative care, you are trading things of different kinds (apples and oranges)—life against a comfortable death.

How many comfortable deaths need to be achieved to forsake a single life? The reality is that a comfortable death need not take a lot of resources away from saving lives, but it will need some. If reallocating resources results in one extra person dying, how many painful, lonely, frightened deaths would need to be made comfortable deaths to make that tradeoff acceptable? I would be prepared to lose lives that could otherwise be saved if it meant that many people whose lives could not be saved were given comfortable deaths. This view is not reflected in many government policies and I suspect that until the tradeoff is made explicit and data gathered, there will be no progress in fair resources for palliative care. It would also be good if voices from the global south were reflected in such considerations

Lessons in saying sorry

An apology is supposed to feel uncomfortable. After all, you did something WRONG. It is supposed to expose you and make you vulnerable. The movie, A Fish Called Wanda, provides a textbook apology by John Cleese after he is hung out a window by his ankles and schooled in the art by Kevin Kline.

In contrast to a fulsome apology, when it contains small flourishes to diminish your discomfort, it ceases to be an apology because it is now about you and your discomfort and not about the people you wronged. If you go so far as to try and suggest that the people who were offended need a new perspective, you really have stuffed it up.

Yesterday I had an opportunity to contrast two apologies and they could not have been more different in tone or impact. One was made by an extremely powerful voice in global health and the other was made by one of the many sincere workers in the field.

The power-apology was given by Richard Horton, Editor in Chief of The Lancet, who had approved the cover of the most recent issue. The cover was, in its entirety, a degrading observation about women. It reduced women to a reproductive body-part. The article, from which the cover quote was extracted was fine and, in the context of the article the text was relevant and reasonable. Decontextualised and displayed as the cover image, it was simply offensive. Think of putting a racist slur on a billboard that was extracted from an article on the horrors of racism.

Many readers were profoundly upset by the cover. They tweeted about it (giving rise to the hashtag #morethanavagina) and they wrote letters to the Lancet about it. With much cajoling, the Editor in Chief finally published an apology,

“I apologise to our readers who were offended by the cover quote and the use of those same words in the review. At the same time, I want to emphasise that….”

And here, in the second sentence, he lost it. He wasn’t apologising. Not really. It was insincere and an attempt to diminish the offence by suggesting that there were good arguments on both sides. He has undoubtedly made a difficult situation worse when his intention — badly executed — was to try and placate.

The contrasting apology, the sincere-apology, followed a large on line meeting to discuss a research protocol. One attendee (who had earlier raised pertinent questions about the protocol) inadvertently left his microphone open. He was heard to comment at the end of the meeting (in colourful and disparaging language) that the protocol was poor and should never have been funded. I missed the moment but as soon as I was told about it, I wrote to him. He replied.

I beg forgiveness for my unintentional comments. I had previously raised all the issues I needed to. So with this email I am begging sincere forgiveness from my colleagues. Sorry once again.

Now that is an apology(!), which will be circulated. I don’t know if it will be accepted by others but one cannot fault the sincerity of it. And that is in the nature of the genuine apology. You put yourself out there, take the risk, and hope the injured party will accept it. There was no prevarication and no attempt to diminish or justify the offence. He simply apologised.

In the absence of Kevin Kline on speed-dial, a sincere apology from those in power remains as elusive as a unicorn.

The original article was first published on medium.com on 28 September 2021. This version is very slightly edited.

The Leadership a-Gender — 1

After competence, are certitude,  charisma and chutzpah the 3-Cs of research leadership?

An image encouraging positive thinking to overcome self-doubt. Just make sure there are no large dogs about.

When Rob Moodie was the CEO of the Victorian Health Promotion Foundation (VicHealth) he started a “conversations in leadership” series for the recipients of VicHealth Public Health Research Fellowships. The idea was to begin an explicit process to develop research leadership in public health, drawing us together to think about the qualities that were necessary.

There were ten of us at the first gathering; two men and eight women. Beyond the fact that it was a meeting for “future leaders”, none of us knew what it was all about. Rob went around the table, asking each of us in turn to introduce ourselves; he also asked how we felt about being identified as a future leader in public health research.

The gender divide was immediately and starkly revealed. When Rob asked Paul (the other man in the room) and me how we felt, we gave suitably immodest responses. I can’t remember our precise answers, but they would have reflected in some way on the appropriate recognition of our talent. Then the first woman spoke. She told, hesitantly, of a gnawing fear that she would be “found out”. Someone, probably sometime very soon, would realise that she was a fraud. She had no right to the VicHealth Fellowship, and she had even less claim on being a leader. Paul and I glanced at each other. Who were we to say that she was wrong? And then there was a visible sigh from the other women in the room. Each one, in turn, expressed an almost identical fear of being found out. This is a well-recognised phenomenon in the gender and leadership literature, described as, “imposter syndrome“: the fear of being found out.

Notwithstanding my bravado or Paul’s, I suspect neither of us felt quite as sure of our place as future leaders as we expressed. I know I didn’t. Nor, however, did I fear being found out in quite the same way the women had expressed. I may have worried a little about whether my performance would be good enough (was I leadership material?), but I did not experience the depth of self-doubt expressed by my colleagues. I had been invited into the room and, therefore, I had a right to be there! They received the same invitation but doubted their right.

An article in the Harvard Business Review on overcoming the feelings of inadequacy associated with imposter syndrome described individual, cognitive behavioural techniques (CBT) to help people manage the sense. If these techniques work, that’s great! The solution, however, reveals at least as much about organisational gender bias as it does about ways to overcome it. Underlying the CBT approach is not simply a view that self-doubt is misplaced, but that there is a deficit in the way a person’s brain works if they have that self-doubt. In other words, to succeed in leadership, you need to think more like me! The obverse problem, having an over-inflated and unrealistic view of one’s own excellence, is often rewarded in organisations, and the sufferer (or more likely the insufferable) is never referred to a Psychologist for therapy “because you’re not thinking right”. Having the 3-Cs of certitude,  charisma and chutzpah — typically identified as leadership qualities and never as leadership deficits — means that you are thinking right.

It is worth noting that although the women expressed the fear of being found out, they had all applied for and won highly coveted VicHealth Fellowships, and they were all in that room — even with their doubt.

The researcher, Thomas Chamorro-Premuzic, suggests that many of the 3-C style traits that are traditionally associated with great leaders may in fact be emblematic of leadership weaknesses. Being quieter (a listener), more thoughtful (open to new ideas) and having some self-doubt (seeking out a diversity of expert advice) can be valuable traits in good leadership. These are traits often associated with women who are passed over for leadership positions because they have not yet had their “deficits” corrected.

There are some clearly terrible traits for research leaders to have. Being a bully, mean, harassing staff and being incompetent would be high on that list. In research leadership, raw incompetence would be unusual. The others, sadly, are not. Research organisations need methods for identifying good research leaders that do not fall back on tired tropes, and provide women fair paths of advancements. These are organisational systems issues, not individual deficits to correct. Almost two decades ago, Rob Moodie’s conversations in leadership was a gentle step in that direction: making us all ask the question, what is it to be a great leader? He never said, by I suspect that he hoped we would carry forward some insight into the leadership a-gender.

W.H.O. still thinks health equals medicine.

Not a WHO Director (source: JHU, Medicine)

Health related, Director-level appointments in the World Health Organization (WHO) are not front-line health workers with well-honed clinical skills. They are Senior Management/Administration. They need to understand resources, politics, and systems. They need to be able to gather, balance and weigh evidence, lead teams, provide advice, develop strategy, and monitor and evaluate performance. All this is done with the support of qualified teams. Where disease-specific knowledge is required, medicine can be useful. It is not uniquely qualifying.

A year ago I wrote that public health is not a specialisation of medicine. Sadly, no one at WHO read the blog. I know this because of the four director level (D1) positions recently advertised by the WHO African Regional Office (AFRO): (i) Regional Emergency Director; (ii) Director-Communicable and Noncommunicable Diseases; (iii) Director – Universal Health Coverage/Life Course; and (iv) Director – Universal Health Coverage/Healthier Population. Under “Required qualifications”, a medical degree with postgraduate qualifications in public health is stated to be essential for the first three positions. The requirement is marginally relaxed to “ Medical or health-related degree with postgraduate degree in Public Health or Social Sciences” for the last position.

The WHO view about the relationship between medicine as a qualification and the skills and capabilities required to fulfil the job — when you actually read the duties and responsibilities — is myopic. It is myopic because it creates a baseless, blanket exclusion for potentially excellent candidates. Why limit the pool of excellence that is available? No one is in any doubt that the health problems facing AFRO are massive. Hiring the best qualified people, not necessarily the best medically qualified people, will make tackling that problem a little easier.

Much has been written in the management and leadership literature about the need for diversity of thought at senior levels of organisations. The mantra is, do not surround yourself by cognitive clones. And yet, how much more effectively could one reduce the range of thinking than by restricting the thinkers to those who have all been trained to think in the same way? By identifying medicine as an essential qualification for jobs for which medicine is patently not uniquely qualifying, WHO entrenches particular ways of thinking about health and the delivery of its mandate. D1-Directors climb the ladder to D2-Directors. If you cannot qualify to be a D1-Director without medicine, you are excluded from climbing the ladder to a D2-Director. And thus, WHO develops a culture of thinking about health in which health equals medicine.

Who will cut that Gordian knot?