When it Comes to Covid Vaccination, the Terminally Ill Shouldn’t Be Forgotten — They Should Be Prioritized
Their time is precious. The vaccine allows them to meaningfully use what little of it they have left.
The vaccines are here. We now know that the pandemic will end, though not at the same time for everyone. For those prioritized in the early rounds of vaccination, it will commence ending … well, now.
We get to decide who those people are.
This is a unique situation. Never before in human history have we vaccinated our way out of the middle of a global pandemic. And never has a generally accepted component of medical triaging — that we prioritize patients based on who can most benefit from an intervention if they receive it urgently — given us reason to triage for individuals who, whether they receive the intervention or not, will die in the near future.
The most obvious benefit of early vaccination is that you spend less time at risk of getting sick or dying from Covid than you would if vaccination was farther out into the future. But that is not the only benefit. The other is the freedom to resume meaningful ways of living sooner.
Obviously these two benefits are closely connected: one of the reasons our freedom is so restricted right now is because engaging in activities outside our homes is so perilous for our health. But the current debate on vaccine allocation has focused on deciding prioritization according to the first benefit while ignoring the second.
This has led to an inadequate accounting of the needs of a certain part of the population, the terminally ill, for whom time is very much of the essence.
If you are only predicted to live for a short period more, there is good reason to prioritize you for vaccination over someone likely to live a longer life, for reasons over and above your likely greater vulnerability to serious illness or death. Delays in vaccination which prevent the resumption of meaningful ways of living are more costly for those with less time left to live.
A terminal illness is a disease or condition for which there is no curative treatment and is reasonably expected to lead to the death of the patient. But not everyone with a terminal diagnosis has reason to be prioritized. There are two exceptions we might keep in mind: (a) terminal patients whose terminality is not close to being imminent, and (b) terminal patients whose quality of life is not recoverable.
Here is an example of the first: a 20-year-old who discovers he has the faulty gene that causes Huntington’s disease after a genetic screening, but who would likely not manifest symptoms for another 10 to 30 years. This person may be considered to have received a terminal diagnosis, but would not be justified in receiving vaccine prioritization according to my argument, because of how long they can expect to continue living. For an example of the second, consider an elderly-aged individual who is comatose and whose doctor judges she will likely never recover consciousness. This person also falls outside the scope of my argument.
My argument applies primarily to individuals who have little time left, who have a quality of life capacity intact, and who are not so exceptionally clinically frail that the risk of possible side effects is too great. Consider the patients profiled in a recent STAT piece, which conveys the tragedy of these patients, at the end of their lives, being forced to cancel time with loved ones, long hoped-for trips, and the “little social moments” that are so important when experiencing terminal illness.
Clinicians should be granted the discretionary privilege to prioritize such patients for vaccination so that they can make the most of their limited remaining time.
When I say that vaccination will allow patients to resume meaningful ways of living, I do not mean the ability to live wholly unencumbered from social distancing regulations. Vaccines are not guarantees of safety, and it is important to communicate the need to continue protecting others once vaccinated, which means mask usage, avoidance of crowded indoor areas, and generally following public health rules. But receiving the vaccine will allow a terminally ill individual to live out in the world without the same fear of contracting a disease which, as a clinically vulnerable individual, could cause serious illness and an even more premature death.
There are also encouraging signs that the vaccines may be useful in preventing transmission of the virus. Early evidence from Israel supports the hypothesis that receipt of the Pfizer/BioNTech vaccine reduces an individual’s viral load if they are subsequently infected with Covid-19, indicating that vaccination reduces transmission as well as conferring individual protection. A pre-print in The Lancet suggests the Oxford/AstraZeneca vaccine may likewise confer protection from viral transmission (note: both studies are yet to undergo peer review). And the CDC has stated that fully vaccinated individuals do not need to quarantine following exposure to an infected individual, because asymptomatic individuals are believed to transmit the virus less readily than symptomatic ones, and vaccination confers a large degree of protection from symptomatic infection.
If vaccination confers more freedom to live safely for yourself and for others, as the clinical trial data, early evidence on transmission, and CDC guidance suggests, we should not be underselling this benefit of the vaccine. It is in everyone’s interest for as many people to want to be vaccinated as possible. And we could communicate this benefit by prioritizing the terminally ill so they can most meaningfully experience their remaining time.
This time is precious because the end of life is suffused with what the philosopher Ronald Dworkin identified as critical interests: things that we pursue not just because we enjoy the experience of them, but because we believe they are constitutive of our own ideas of what a good life means for us. For example, people raise families not just because they enjoy the experiences of family life, but because they view having a family as central in the narrative of their lives.
For people with the knowledge that they will die soon, all interests become viewed through the lens of critical interests. We wish to choose experiences most in line with the best forms of living we have identified in our lives: prioritizing time with close friends and family, visiting significant places from our past or embarking on new adventures, eating our favorite foods, and so on. The choosing of experiential interests becomes an expression of critical interests.
Of course, it is not only the terminally ill whose critical interests are being denied during the pandemic — consider the couples who have delayed their wedding multiple times over the last year. But the reduction in freedom that has come with the need to socially distance and the corresponding barriers to the fulfilment of critical interests is temporary for the majority of the population. Weddings are being delayed, not canceled full stop, and delay is not the same thing as forfeiture. In contrast, significant delays in the fulfilment of the critical interests of the terminally ill will likely mean they cannot be fulfilled at all. A lost year is bad, but a lost ending is worse.
One of the only public discussions of vaccine prioritization for the terminally ill has taken place in the U.K. It was brought about by the advocacy of Fred Banning, a 38-year-old father of two young children, who was diagnosed with incurable bowel cancer in February of last year. In a Sky News interview, Banning explains that vaccine prioritization would allow terminally ill patents to spend more of the “finite time” they have with their families. “When you do feel that you have a finite time left to you, the difference of, say, a couple of months in when you get vaccinated is actually really, really significant.”
In her response to Banning’s campaign, the first minister of Scotland Nicola Sturgeon replied that she understood the reasons behind the request, and noted that “within that priority list are the clinically vulnerable, and therefore there will be priority.” Cabinet Office Minister Michael Gove replied that the government was reviewing how the “most vulnerable and those in clinically difficult positions can be vaccinated.”
It is true that terminally ill patients in the U.K. may be prioritized on the grounds of their clinical vulnerability, and the early start and subsequent speed of the U.K.’s vaccine deployment means that no-one there will have to wait too long for vaccination. But Britain is an outlier. The U.S.’s rollout has been comparatively slow, and only 22 states have included high risk younger adults in phases 1a and 1b of their vaccine rollouts, a category many terminally ill patients occupy. Vaccination is moving at a crawl across the European Union as its nations struggle to vaccinate their highest priority citizens before moving onto other selected groups. By mid January, only 25 vaccine doses had been administered across all the low-income nations on earth. Even if they are categorized as clinically vulnerable, terminally ill patients worldwide may be waiting a long time for vaccination.
And this is time they do not have. Despite the compassionate response from some British policy makers, there is still the feeling that they were talking past the ethical weight of Banning’s request. Focusing on clinical vulnerability fails to account for the uniquely urgent exigencies faced by the terminally ill: the need for a speedy vaccination. This is important not only because it justifies their prioritization over an equally clinically vulnerable, but non-terminally ill patient, but also because we are morally obligated to provide a full accounting of the reasons that justify prioritization.
The ethics of vaccine allocation cannot be reduced to the question of who is to receive it when: why they are receiving it matters too. Intention matters to morality. For example, it is defensible to prioritize the vaccination of political officials on the grounds that they are essential workers and vaccinating public figures might reduce vaccine hesitancy in the wider population, but it is indefensible if they receive the vaccine earlier because of cronyism and political influence. The why matters.
Likewise, it is important to recognize and communicate that some terminally-ill patients should be prioritized for vaccination not just because of their clinical vulnerability, but because their remaining time is particularly precious. To adopt this policy would demonstrate a welcome and long overdue respect for the special importance of the end of life.
On Wednesday, Fred Banning received his first vaccine dose. That is wonderful news. For the many others in his position worldwide, there is little time to waste.
