Quality vs. Quantity at the End of Life

Welcome back to the final pre-PhD Moral Guillotines! This will be my last post until mid-September, but I promise I’ll be back soon. On that note, today’s post will be about death.

As humans, we generally like to avoid unpleasant things. Some of these things are concrete, like harm, some of these things are social, like conflict, and some of these things are potential harms and conflicts, ones that we can’t anticipate and don’t know when they will come and what they will look like. Things like death.

Despite the importance of legal documents at the end of life such as DNRs, wills, and living wills, most statistics say that at least 50% of adult Canadians do not have such documents in place.

But even if you have such documents you may not be planning the end of life you desire, or if you have not communicated your wishes to your family they may try to interfere with your plans. In these cases, most hospitals have ethicists and ethical guidelines to try to resolve conflicts between patients, caregivers, and doctors.

There is also a disconnect between what end-of-life care doctors would choose for themselves and their families vs. what most patients and their families choose.

Life at the Doorstep of Death

It is already contentious whether or not we consider life to be an intrinsic good. However, conversations about the value of life become even more fraught at the end of life- a time when autonomy is more likely to be limited by cognitive and physical disabilities, and when existence may be seen as a burden because of intense levels of suffering both in terms of pain and in terms of dignity.

In Canada, we are working towards a system of euthanasia, or physician-assisted suicide to help prevent unnecessary suffering- right now some patients have access to this service, but there are still many problems with its rollout. In conjunction with this, we also have medical advances that provide an increasing capacity to keep individuals alive according to some technical measures but not others (fun fact: there are at least 7 ways to be dead).

The decisions around death become even more confusing in situations such as those experienced by Dr. Jauhar’s patients as described in his article “How do you want to Die?” which asks, would you rather live longer or have the type of death you want?

Essentially, medicine, through its proficiency and power, is asking us to make the most fundamental decision about how we want to live our lives and die our deaths: quality or quantity?

The Problem of Conflicting Values

Obviously, most people would want to say ‘both’, the same way we want to be protected from hate speech while simultaneously we want to have the right to freedom of speech, but sometimes, rights and values just come into conflict.

At the end of life, the quality and quantity of life and death may be like this, and so we have to choose. That’s why DNR orders are great- because they enable you to make the choice before you are in the situation, especially if you are cognitively or physically unable of making decisions later on. DNRs are likened to Ulysses contracts– something your present self does for your future self that enables you to make hard decisions that you know are right and so prevent you from weakness-of-will in the heat of the moment.

Furthermore, no matter how much we want to avoid talking about death, thinking about death, or heck, avoid dying at all- death is coming for all of us. Death is the only certainty. This was stated very poignantly at a recent conference I was at, where the speaker, talking about children and the horribly fraught decision to become a mother said, “The only thing you can know about your child before they are born is that they will die.” And, while death is certain, the method and quality of death is unknown.

The value judgement that must be made at the end of life in situations of medical and palliative care between quality and quantity can only be made by individuals, but the choice does not simply go away because you avoid thinking about it. Just as in all other cases, the ethical determination of the rightness of your action may change based on this, but inaction is always in and of itself a type of action.

What is the Ethical Decision?

When we are talking about the death, there is not a fixed ethical choice. Instead, like in many complicated contexts where an action will only impact a select few people, or perhaps only yourself, the ethical choice is the one that is best for you and your loved ones.

The first step to exercising your autonomy and making an ethical choice for yourself is to be informed about what death is like and what palliative care options or medical interventions are available. The second is to deliberate on your own values and and preferences and decide how those fit into the process of death you envision for yourself.

However, when doing those things we also need to be realistic about our capacities- or lack thereof. One of the most incredulous things to me about how we treat disabled people is the fact that 33% of seniors age 65 and over in Canada are disabled. These are factors that need to be a part of the discussion of end-of-life care. Similarly, you need to be realistic about your expectations of death- if you end up in a hospital and are taking any and all life saving measures, chances are you won’t pass peacefully or suddenly in your sleep. The choice to prolong suffering is a legitimate one- especially since the suffering will be your own.

But it is a choice we all have to make.

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