Category Archives: Equity

Related to the fairness of distribution of goods, opportunities, and processes.

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

Playing Fair: “Horizontality” and the Future of Aid

The arrival of US Aid, “from the American people”.

In his book, Playing Fair, the self-confessed Whig, Ken Binore argued for the redistribution of the “social cake”.

For progress to be made, it is necessary for the affluent to understand that their freedom to enjoy what their “property rights” supposedly secure is actually contingent on the willingness of the less affluent to recognize such “rights”. It is not ordained that things must be the way they are. The common understandings that govern current behavior are constructs and what has been constructed can be reconstructed. If the affluent are willing to surrender some of their relative advantages in return for a more secure environment in which to enjoy those which remain, or in order to generate a larger social cake for division, then everybody can gain. (p.7)

In other words, if we do not share the cake, “they” might burn down the bakery.

I am more idealistic. I have a sense that we should share the social-cake because it is the right thing to do, or maybe it is less the case that redistribution is right than it is wrong to leave people in states of significant disadvantage, particularly when one can do something about it. I am also sufficiently pragmatic not to care what motivates people to extend a hand to others.

Do it because it is right. Do it because it serves your own interests. Do it as a romantic, random act of kindness. I don’t care. The capacity of a dollar to make a difference is not altered. DO IT!

Let me extend this discussion to support offered by more affluent countries to less affluent countries. A couple of days ago I attended a virtual dialogue at Wilton Park as part of their “Future of Aid” series. “Aid” in this context is the (usually financial) assistance provided by one country to another.

Definition; Aid: Late Middle English from Old French aide (noun), aidier (verb), based on Latin adjuvare, from ad- ‘towards’ + juvare ‘to help’.

At least in conceptual origin, country-level aid is about one country doing something towards helping another country. And I would argue that what is really meant (or should be meant) by one country helping another country is that they are helping to improve the lives of the people who live in that country and, in particular, the less affluent and less powerful people.

An important idea emerged in the discussions about aid and that was “horizontality”. Horizontality is the idea that the donor and the recipient countries are equal partners. It is an attempt to move aid beyond neocolonial domination. I applaud this idea, at least I applaud the idea that we should not use aid as a vehicle for exchanging one kind of colonialism for another.

What I hope we are saying when we talk about horizontality is that aid is not about the exercise of power, it is about the redistribution of power. To achieve horizontality, aid can be neither handout, loan nor gift. Aid must be part of a just, redistributive process to improve lives and reduce suffering that recognises we all share one planet, and appreciates that donor and recipient governments are imperfect, though necessary, vehicles for realising these goals.

Horizontality does not mean that aid should be without conditions or accountability. In fact, it means the very opposite. Aid should have strong accountability mechanisms because the purpose of aid is to help people, and governments (and other involved commercial or civil society organisations) are simply vehicles for achieving that goal. The aid is from my people to yours.

If I give money to a homeless person, I am not asking for them to account for how they spend it. I am giving it to them because they need it. Maybe it goes on food or shelter, or maybe some momentary pleasure or relief from misery. If I give money, however, to a charity, I absolutely want them to account for how they spend it, because they are the means to the end and not the end in itself.

COVID-19 has brought the “future of aid” question into stark relief. We need better, more respectful mechanisms for delivering even more aid from more affluent countries to less affluent countries. The aid needs to come with strong accountability mechanisms to ensure that benefits are distributed according to an inverse power-law: the least powerful and the least affluent first. Aid, of all things, should not trickle down. When it does, governments on both sides of the aid-exchange should be held to account, by your people and mine.

How do you make a grown man cry?

Answer: Give him £20.

You look baffled — like you missed the punchline to a joke. There was no joke and you didn’t miss anything. Although I have a perniciously dark sense of humour, this is not an example of it.

Outside a supermarket, in South London, there was a man begging. I had a £5 note amongst a couple of twenties and I fished it out and gave it to him. He looked grateful for this small windfall and tucked it away in one of the many folds in his layers of clothes.

COVID-19 has pushed people out of their jobs and out of their homes. The lockdown has reduced pedestrian traffic on the streets, closed public toilets, and made life even harder for the homeless than it was before.

He and I did not catch up on the state of business, but I imagine there were not many people giving him £5 notes. By the time I’d finished my shopping, he had already bundled his belongings together and headed off — I surmised, for food — and in his place was a new face.

I saw the new guy and my immediate thought was, “Yeah, Nah”. I did what anyone would do in these circumstances. I ignored him. I made no eye contact. I pretended I had not heard his polite request for help, and I headed down the street.

Before you judge me, let me remind you, I had already given away my £5 note and all I had left were the twenties. There were also other prospective givers, who felt no compulsion. If they weren’t giving, maybe they knew something about him that I didn’t — some mark or taint that made him less deserving of charity. I felt OK about the decision. Thomas Aquinas wrote, “because there are many in necessity, and they cannot all be helped from the same source, it is left to the initiative of individuals to make provision from their own wealth, for the assistance of those who are in need.” And I had already done my provisioning for the day.

Two hundred meters down the road, I thought to myself, “you arsehole”. And I walked back. I retrieved a £20 note from my wallet and I folded it so it could be passed to him more discreetly. As I got closer I was struck by how lifeless he looked. Huddled, still, and head bowed. He was not looking about anymore. He was not begging. He was spent.

I put my hand out with the money and he reached for it mechanically. Head up to say, thank you. Looked at his hand. Looked again. Started to say, thank you, and burst into tears. There is something profoundly wrong with a grown man being that grateful for £20 — a breach of protocol — so I joined him.

Who speaks for whom in Global Health?

Speakers’ corner [Source: Wikimedia]

I had an interesting experience the other day when a friend, Mark Cheong, and I submitted a letter to one of the leading health journals.

Mark, a Malaysian academic, had done his PhD on palliative care with a particular focus on the delivery of palliative care in low- and middle-income countries (LMICs). For about six months, he and I had been discussing the ethical challenge of delivering palliative care in LMICs. It is a pillar of Universal Health Coverage. Still, there is a possibility that in weak health systems, governments could avoid their obligations to deliver curative care by choosing, instead, to deliver palliative care.

With the development of the COVID-19 pandemic, our conversation had taken a slightly different path. The modelling suggested that many LMICs would have their hospitals and clinics overwhelmed with COVID patients. The basic management tools of oxygen and ventilators, which were being rationed in High-Income Countries, would be a rare resource in poorer ones, leaving many people to die without any care at all. Our thinking returned to the palliative care question. The ethical dilemma, however, had shifted. The issue now was, how do LMICs deliver palliative care at a massive scale?

This was the subject of the letter, “Manage suffering when you cannot manage treatment”. The letter didn’t say anything earth-shattering, but it was necessary, and it had been crafted into a pithy 600 words. We had not seen anyone else raise the issue in the COVID-19 literature, which was (and still is) overwhelmingly focused on the provision of clinical care. We submitted the letter and crossed out fingers.

In terms of an academic career, a letter in a high profile journal does not amount to much. But it is a nice affirmation of one’s relevance in a global conversation. As a mentor, I have certainly encouraged colleagues to use letters as a vehicle for sharing and developing ideas. It also strikes me as important that it is academics and health professionals in LMICs who are the ones highlighting the issues that are important in LMICs. Now, you might take issue with whether I have a legitimate place in that conversation or not, but there is no doubt that Mark does.

I was surprised when, 9 days after the letter was submitted, an editorial appeared in the journal developing similar ideas. It was written by the Editor-in-Chief, a well-known advocate for many worthy causes, who lives in a high-income country. He regularly uses the pages of the journal to discuss challenging global health issues about health equity and human rights. He had more words available to develop the ideas and, in truth, he writes much better than we do. Six days after the editorial was published (15 days after submission), we received the rejection letter.

Thank you for submitting your Letter. Having discussed your Letter with the Editor-in-Chief, and weighing it up against other submissions we have under consideration, I am sorry to say that we are unable to accept it for publication. Please be assured that your Letter has been carefully read and discussed by the Editors.

I did not feel assured at all. It would have been impossible for the journal to publish the letter once the editorial was published. It was redundant. Instead, it made me wonder about whose voice gets heard? Whose voice has enough legitimacy even to have the possibility of being heard? And the reality is that power matters.

Nothing nefarious happened. Ideas are cheap, and the Editor-in-Chief had a similar idea to our’s — and he has a privileged platform from which to deliver it. The message is important, and ultimately it was delivered. Does it matter who delivered it? I think it does. Having the right to say something does not mean it is right that you say it. Comedians are very aware of this. A powerful joke from one person’s mouth falls flat when delivered from another’s. Who tells “a Jewish joke” and who uses the “N” word can shift comedy from hilarious to tone-deaf to the offensive.

To have a platform from which to advocate for justice is a great thing. It is often more important to use that platform to enable, empower and legitimise other voices (and add your voice to theirs) than to be the voice.