Imagine that you are offered a medical program, free of charge, that not only promises a lifespan of 200 years, but also a life free of disease, illness, injury or pain of any kind. For example, you will never develop cancer or heart disease or pneumonia, and if you break your leg, it will heal instantly. Would you be interested?
Suppose further that the medical plan requires no special work on your part, no promises to keep, in fact no obligations whatsoever. Just to sweeten the pot, you are also guaranteed that you will never be required to partake of anything that you loathe or find distasteful. If you dislike opera then you will never be exposed to opera. If you can’t stomach broccoli then no broccoli for you. If sports are not on your radar, then they will not be offered. Does the medical plan sound pretty tempting? Not only a very long life free of worry, responsibility and suffering, but, in addition, on your two hundredth birthday there will be a big send-off and you will die peacefully in your sleep that night.
There is no fine print in this offer; no hidden ‘catches’ to trip you up. Well, except for one.
During your entire 200-year life span you will never be allowed to engage in anything you enjoy. If you love chocolate ice cream then no chocolate ice cream for you; but if you are neutral about banana ice cream then banana ice cream will not be off-limits. If you love rock’n’roll, then no rock’n’roll for you; but if you are ambivalent about jazz then that will be made available. If you love tinkering with tools, then no tinkering for you; but if reading neither excites nor bores you then you’ll have unlimited access to the printed word. Should anything neutral become something you either enjoy or detest, then it, too, will be out of bounds.
Well, what do you think? Ready to sign up? Remember, 200 years at no cost, and you can opt out anytime and return to your present life of unknown duration, replete with risk, potential for pain and suffering.
I have offered this program to many groups and individuals, but despite the plan having some very appealing elements, no one has ever opted for it. Why is that?
It likely relates to something we refer to as ‘values’, ideas we use to explain why certain things matter to us. Values are things we are willing to work and sacrifice for in order to achieve. One way to categorize values is to examine whether they are intrinsic or instrumental or both.
Intrinsic values are ones we seek for what they are; we desire them for their own sake. We may have many such values: peace, freedom, and health, for example. On the other hand, we identify something as instrumentally valuable because it helps us to reach our intrinsic values. So, for example, the law may help us to attain a peaceful and civil society; democracy may
facilitate maintaining our freedom; and health care systems may help us to maintain maximal health. Thus, law, democracy and health care systems have instrumental value.
Interestingly, health has both intrinsic value and instrumental value for us. It is a good in and of itself, but it is also instrumental in helping us to attain so many other intrinsic values. It is easier to be at peace and to utilize our freedom when we are healthy than when we are not.
Our little thought experiment demonstrates that although health has a considerable degree of intrinsic value to us, its primary value for us may be more instrumental: it allows us to realize so many of our other values, without which life might feel rather empty and meaningless.
It is easy for us to lose sight of this reality. Yes, health is important, but it is not the only intrinsic value we have, and maybe not the most important one either. We should not elevate it to such a point where it automatically trumps all other values because many of our most cherished intrinsic values might be sacrificed in the process. In fact, the instrumental value of health may be just as important, or even more important, than its intrinsic value.
Is this at all relevant to the pandemic and how it has been managed? In the process of protecting health, have we sacrificed too many of our other values, even sacred ones like freedom, the right to worship, and the need for social contact?
Let me give you a concrete example.
In December 2019, my wife and I made our annual pre-Christmas pilgrimage to visit my mother who was living in a nursing home a six-hour drive away. The following month, January 2020, she had her ninetieth birthday. With her children and grandchildren scattered widely, the plan was to delay the celebration until March allowing most family members to attend. Needless to say, that celebration did not occur because the pandemic, and its restrictions, were in full force by then. It turned out that my visit in 2019 was the last time I was to see my mother alive, as she died peacefully (not related to COVID) on Good Friday, 2022, in that same nursing home, without her family present. Multiple attempts to schedule a visit prior to her death had been scuttled, often just days before a prearranged visit, because of the ever-changing pandemic rules.
On the surface it is clearly a sad story, but at a deeper level it is truly tragic. My mother was so desperately afraid of acquiring COVID-19 that she acquiesced rather easily to isolation from her family in order to be ‘safe’. I had the feeling that she was not alone in her sentiments; isolation from loved ones was simply the price that had to be paid in order to be ‘safe’ from COVID and no other perspectives could be entertained. The governmental authorities had decided what was best for her and us, effectively deciding which of our values were acceptable, and that was that.
This experience of mine, and the entire pandemic in general, have reminded me of the thought experiment above. Is the quantifiable yardstick ‘length of life’ the ultimate measure by which to make medical decisions? Does quality of life ever fit into the picture? And who decides?
At ninety years of age, was it best for my mother to be separated from her loved ones so as to potentially live a year or two longer? There was absolutely no guarantee that she would have contracted COVID, nor would have died of it, had we been allowed physical contact with her. Under what circumstances would she and her family be allowed to decide the risks she was willing to take in the context of their values, not those of the authorities? Could arrangements have been made whereby patients and their families who wanted to maintain personal contact could have done so without putting staff and other residents at unacceptable risk? Having taken care of patients in nursing homes for two decades, I think such mechanisms exist.
My story is not a rare one, and it is one worthy of more ethical reflection. We’ll explore such issues in our next article.
J. Barry Engelhardt MD (retired) MHSc (bioethics)
CAERS Health Intake Facilitator
I’m so sorry to both of you, Barry and Cinnamontwist, for your losses. My parents are in their sixties and I’m grateful everyday to still have both of them. Having worked with the adult and elderly population in community programming and rehab for over 10 years, I can say, without a doubt, no one is ever prepared to lose a parent. It is jarring at any age because these were our role models and their loss represents the end of an era, the formal or informal passing of the baton and responsibility of matriarchal or patriarchal roles. To go through this transition without the closure of saying goodbye is beyond me. My heart is broken for the millions of stolen goodbyes the pandemic response is responsible for. I’m also enraged. Furious that fear overtook common sense. Furious that our fears were created and then taken advantage of.