The Magic Check-Out Line

This article is in response to Canada’s recent legalisation of assisted death.

There once was a frail elderly man who lived with his son, daughter-in-law and their four year old son. One day, the adult son became impatient with his elderly father, because in his old age he had difficulty eating and caused a mess at every meal. So every night the adult son made his father sit alone in a room with a wooden bowl to eat by himself, so that the rest of the family would not be bothered. One day, the adult son came home from the fields to find his son sitting on the kitchen floor playing with scraps of wood. “What are you doing?” asked the father, sweetly. Just as sweetly, the boy replied, “I am making a wooden bowl that you can use when I grow up.”

This powerful story makes me think of how we are treating our elders and our vulnerable who are dying today. In particular, it makes me think of the woeful lack of palliative care in Canada.

Palliative care helps people live until a natural end, addressing their physical, psychological, spiritual and emotional needs. Dr. Cicely Saunders began the modern palliative care movement from England. She founded St. Christopher’s Hospice in London in 1967, the first of its kind. She said a cry for death was an indication that we had not met the needs of the patient in some way.

Yet only 16%-30% of Canadians die with access to or receive palliative care and end-of-life care services.[1] That means 70%-84% of us die without it.

Undue influence by circumstance

As a lawyer I encounter the issue of undue influence every day. For example, is my client being pressured by her future spouse into signing a one-sided marriage contract? Is an elder being forced to sign a Will that does not reflect his wishes? But there is a wider, environmental kind of undue influence, and it can be systemic. For instance, is this elder’s lonesomeness causing him to give everything to his caregiver to the exclusion of his family? The problem with this form of undue influence is that it is insidious, because it permits the illusion of sound, rational and sober choice, while cloaking the underlying undue influence. It is arguably very difficult, if not impossible, to detect this sort of undue influence, for it requires a situational, holistic and contextual understanding of the person which is arguably not available in contemporary forms of analysis that are used to determine a person’s capacity.

Now I want you to imagine the undue influence that is possible by the circumstances we have created for our elders and dying. In particular, I am referring to the woeful lack of good, quality, compassionate palliative care, and the undue influence that could have on their choice to die by assisted suicide. Let me share a true story that helps to illustrate the point.

My firm once had a client who directed medical staff to remove her from life-saving drugs to let her die naturally with the use of pain management. She did not want assisted death. But palliative care was not available to her. It took her six weeks to die. To put it into context, that is a month and a half of perishing in a hospital, without the emotional, psychological, physical and spiritual care that only a devoted palliative care team can provide. As a result, the focus was not on her passing, but on saving the patients around her, for that is the integral mandate of a hospital. By contrast, the focus of palliative care facilities is the journey towards death, not its reversal.

Our client’s attending physician disclosed to us that the cost of occupying her hospital bed by furthering her treatment was very high, and that this cost factored in his mind as he contemplated the patient’s options with her. It is only human to do so. But we must not permit dispassionate economic calculations to dictate how we treat our elders, especially when a cheaper option is readily available in the syringe. If we do, we will surely rob our elders of their dignity, and steal from ourselves our own dignity too. Like the man who forced his father to eat by himself to avoid the inconvenience of caring for him, we risk having our own children show us the same callousness in return.

Let’s take a moment to distil what a conversation might look like between a dying patient and her attending physician, from the patient’s point of view. If one person chooses assisted death to relieve her of the shame she feels because palliative care is not available to her, that will be a crime against humanity.

Day 1

Doctor: “Madam, we don’t have space for you in the palliative care ward.”

Madam: “So I must continue to suffer here with indignity, where doctors and nurses seem to be running in every direction but my own, and are not focussed on ushering me towards my final destination?”

Doctor: “Yes.”

Day 3

Doctor: “Madam, we still don’t have space for you in the palliative care ward.”

Madam: “So I must continue to suffer here with indignity?”

Doctor: “Yes.”

Day 7

Doctor: “Madam, we still don’t have space for you in the palliative care ward.”

Madam thinks to herself: “I understand there is always space for me in the assisted dying ward to relieve me of my indignity.”

Some will say, “I don’t believe that people will choose assisted suicide because they lack palliative care.” To him, I say “Are we betting that no one will choose assisted suicide because they lack palliative care?” For if we are, I have never been party to such a wager, where the chit I am placing on the table is an innocent human life.

Of soup kitchens and euthanasia

“Dying with dignity” through assisted death only makes sense in a world in which there is a shortage of palliative care beds. In the same way, advocating for more soup kitchens is only possible in a world in which the current distribution of wealth makes soup kitchens necessary. But I would much rather live in a world in which soup kitchens aren’t necessary by the circumstances we have created for ourselves. Similarly, I would rather live in a world in which assisted death isn’t necessary due to the shortage of palliative care beds, which we ourselves have caused.

Is assisted death in a world lacking in palliative care a natural extension of a world in which we treat people as commodities, good only as long as they represent so many units of production? Is that why our elders and our dying lack palliative care? In a world where there is a serious lack of palliative care, it isn’t hard to see assisted dying as an attractive alternative to living a life that is worthy of palliative care. But it also isn’t hard to think that our society deems the lives of our elders and dying unworthy of palliative care, because of our collective decision not to sufficiently fund it. As a Christian, I believe that in the end, God will render to each person according to his deeds[3] and “the king will say… whatever you did for one of these least brothers of mine, you did for me.”[4]

I know there are very difficult cases. I daresay Elizabeth Bruyere, foundress of Ottawa’s largest palliative care hospital, would not have judged them. I do not judge them. I could not possibly judge them, for I am not fit to do so. And if a loved one wanted me to be there for them until the end, and they wanted assisted death, I would be there with them until the end. But we are better than to withhold palliative care from three quarters of our elders and dying.

He who lives by the sword dies by the sword[2]

What kind of world have we created where our elders, to whom we owe our lives, are unable to get the care they deserve in their last, dying days? And what kind of people are we to set the option of assisted death right in front of them like a snare, draping it in words like “dying with dignity”? Assisted death for our elders and dying makes sense when there is a woeful lack of palliative care in their dying days. But assisted dying is a shell of compassion when compared to loving, palliative care, and everybody knows it. We set assisted death down in a bowl of milk and honey, but it is a sponge soaked in vinegar.

Callousness begets callousness, brutality begets brutality, violence begets violence, and he who lives by the sword, dies by the sword.[5] If we are to allow our most vulnerable to choose assisted death because they lacked palliative care, what kind of society will we have built? The most brutal kind I tell you. What kind of people will our children say we were? The most uncivilized kind I tell you. And by what rule shall we appeal to when our time comes to ask for palliative care? For we will have permitted those who went before us to die by euthanasia as in their brave whispers they appealed for more care. Is this the world we wish to leave our children? Is it the rule we wish to live by, and the sword we wish to die by too? For it will be as Robert Bolt wrote in the play A Man For All Seasons:[6]

“Oh? And when the last law was down, and the Devil turned round on you – where would you hide, Roper, the laws all being flat? This country’s planted thick with laws from coast to coast – man’s laws, not God’s – and if you cut them down – and you’re just the man to do it – d’you really think you could stand upright in the winds that would blow then? Yes, I’d give the Devil benefit of law, for my own safety’s sake.”

The magic check-out line and the coming redundancy of palliative care

There is more trouble brewing than the risk that those wanting palliative care will choose accessible death by assistance because they could not get palliative care.

The risk of having a two-tiered end-of-life system where palliative care is on one end, and assisted death is on the other, is chronically underfunding the more expensive palliative care option. The availability and use of the more inexpensive option of assisted death ends up enabling a chronically underfunded palliative care system, because so many who would demand it, will in the end be tempted to take the syringe from underneath the hospital sheets of shame and desperation. It is a trope to deny this. Palliative care is so expensive and the cheaper option ultimately becomes a reason that palliative care remains underfunded – unless we fight dearly for it.

An economist I once worked with created a thought experiment for the purpose of studying public transit ridership. If there was a futuristic check-out line at a grocery store that was able to process its queue in a second, no matter how many people were in it; and if there were other check-out lines in the same grocery store that had an average wait time of ten minutes, how long would it take for that grocery store to process its groceries? The answer is one second, because everyone would choose the magic check-out line. And what would ultimately happen to the ordinary check-out lines? They would disappear because they would become redundant.

How long will it take before a reasonable person chooses the magic check-out line of assisted dying because extreme duress caused by a lack of palliative care has robbed her of her dignity, has made shameful her incontinence, has made intolerable her pain, and has given her the distinct and inhumane feeling that she is a shameful burden to others? We need to give people good palliative care so they have the true option of living until their last dying breath, instead of taking their last dying breath while living. Otherwise, palliative care risks suffering the fate of the ordinary check-out lines: it will become redundant and so continue to be chronically underfunded. And this, as a matter of convenience, not as a matter of right; as a matter of economic calculations and rational choice theory, and not as a matter of the human rights of those deserving of palliative care but who, because they do not receive it, make the “rational choice” for assisted death.

There have been 162 reported deaths by assisted suicide in Ontario alone between the time assisted dying legislation was passed on June 17, 2016, and December 8, 2016, the time of writing this article.[7] Predictions reportedly show that approximately 300 people will die by assisted death in Ontario within a year of the law being passed.[8] Statistically, 70%-84% of those dying in Canada have access to or receive palliative care. Therefore, of the 162 patients who have died by assisted suicide in Ontario, at least 114 chose assisted death in the absence of a choice for palliative care. Was that a true choice? How many of them would have preferred palliative care to death? The shame is on us for letting them down, and then introducing them to the magic check-out line.

Of those who have already received assisted death, did they opt for assisted death for “shame relief”? Were they offered palliative care? What did they reply? Did they have the chance to ask for it? This information should be demanded of our governments, and could possibly support a finding of a lack of informed consent to assisted dying by those to whom palliative care has been denied but to whom the magic check-out line was offered as an ever-present option instead.

What will we now say of this loss of the Charter right to life, liberty and security of the person? The Supreme Court of Canada granted the right to euthanasia to those who demanded it. What of those who now receive it, but who do not truly want it? How do we test for circumstantial undue influence, while at the same time respecting personal autonomy? Before, we had life without the willingness to live, so death was granted. Now, we have life with the willingness to live, and life is taken away. Is that justice?

It is not difficult to produce the feeling inside a weakened and dying patient, by overt and covert messages, that they are a shameful burden. I have observed them with my own eyes as their lawyer and at times as their legal attorney for personal care. The message comes in the sigh of a nurse going on the ninth hour of her shift while changing a patient’s bedpan, but who is not a trained palliative care nurse working inside a committed palliative care environment, with everything that entails. It comes in the sigh of the patient, who waits for a visit from a doctor whose priority is on saving other patients’ lives.

I tell you it is not the physical pain that tempts death the most, for even that can be relieved while maintaining the will to live. For example, in Oregon and Washington, where assisted death is legal, loss of dignity and autonomy are listed as the primary concerns of those who request assisted death. Pain is not a primary concern.[9] The shame and desperation that comes with making someone feel as though he is a burden to others cannot be removed without good, quality, compassionate palliative care, if we are to respect a person’s ingrained will and God-given right to live until the end. The trouble is, now we have the magic check-out line, which costs little, and palliative care is just so darn expensive. Moreover, the magic check-out line is relatively accessible, and palliative care is not.

By systematizing the syringe, we have just given impetus to tempt our elders and our dying to shake hands with the devil. But these our fathers and our mothers, our sisters and our brothers, are among our fighting cause and hope to advocate for better palliative care. How are they and we supposed to fight when they are being trolleyed away to the assisted dying ward, making palliative care redundant? If this is the way to prompt us to fight harder for palliative care, I say: At what cost?! The cost of fighting for proper palliative care should not be a scapegoat who takes the needle for the sake of shame relief, and whose death urges us to fight for palliative care. The fight has been on since 1962, and it was not about to waiver just because people weren’t being killed.

Some will say “Caesar’s hands are clean! Let the rabble sort out their palliative care.” But I ask you, what is the role of Caesar? Those who would fight for life but for the magic check-out line now fight with one hand tied behind their backs by a system in which “there is always space in the assisted dying ward”. Meanwhile the other hand is always tempted to reach out and shake the right hand of the devil. Is this the role we agreed Caesar should have? If it is, then many of us have been gravely misinformed.

And what of the families of our loved ones who will choose assisted death because of a lack of palliative care? Many will resign themselves to the belief that in the end their loved ones “chose” assisted death, though in the end we shall always know, or should, that in too many cases it was a false choice, made merely because of a lack of palliative care. This resignation risks silencing opposition to assisted death. Worse, it may let the systematization of death creep into our hospital wards and dampen the passion to fight for more and better palliative care.

Because of this, the more attractive option for our weak, our marginalized, our desperate, our dying, our lonesome, our frail, and our elders, who cannot speak boldly for themselves, becomes assisted death. And who will speak out against their inauthentic and unduly influenced wish for assisted dying, once the die is cast?

In the final analysis, assisted dying without palliative care risks undercutting efforts to fund more and better palliative care at home and in our healthcare institutions, because a dark consensus may emerge that palliative care is redundant, for so many are opting to be taken to the assisted dying ward in the absence of palliative care. And so, the premise becomes the conclusion, the error becomes the truth, and the bewailed state of affairs becomes the new status quo. The lack of palliative care, which was the premise that made assisted dying the rational conclusion, now becomes the conclusion itself. For assisted death risks making palliative care redundant, and risks leading to the conclusion that palliative care is unnecessary. This, in the end, may lead to the continued chronic underfunding of palliative care, but in the end, not as a bewailed and exceptional state of affairs, but rather as the state of affairs that must be, a part of this brave new world, in which the rational magic check-out line is really the best, the most compassionate, the only way to go. And so the drape of falsehood covers bit by bit the glory of truth, by pretending to be truth itself, and slowly ushers her off the stage, from simple premise to conclusion.

 

Carter’s two trolling nets

The Supreme Court in Carter argued that the ban on assisted death was overbroad because it had the effect of forcing people to suffer without the option of assisted death. Now let us compare apples and apples.

The Court has traded in one overbroad net for another, but what it captures now is much worse: those who do not wish to die by assisted death, but who choose it because they cannot access palliative care. They live in a world in which they must sit by themselves with the wooden bowl. Such of our elders and dying are vulnerable to undue influence by desperation and shame to take their lives prematurely by assisted death.

Since Carter, the law is now overbroad in the following sense: it forces our most frail by the undue influence of insufficient palliative care to end their lives prematurely, thus perpetuating the chronic underfunding of palliative care and catching still more innocent lives in its trolling net. Instead of inviting them to eat with us, we are forcing our elders and our dying to eat on their own from wooden bowls. Worse, we are forcing them to give up their meals completely.

The choice in Carter, then, was between the right to life and the right to death. The right to death brings with it the theft of the right to life of those who want it, but who cannot have it for lack of palliative care, and who therefore choose death in desperation. By parliamentary democracy, the right to life was preferred. By judicial fiat, the right to life has been taken away.

Death was proclaimed the higher virtue. We have created a world in which palliative care is chronically underfunded. The democratic response was to prevent those lacking palliative care from being forced to choose assisted death. In that set of circumstances, those needing palliative care and their families were our beacon and our hope and our cause to fight for better palliative care. But now, we neatly tie the noose and place it tidily in the frail hands of our elderly and dying, as we politely tell them: “on with the fight, you; but don’t forget, there is always space for you in the assisted dying ward.”

The democratic response prevented this type of world through a complete ban on assisted death. But in the end, the life of those willing to keep it but at risk of being pressured into taking it was not thought the greater value. The value judgment being sent to he who insists on living until the natural end is clear: “if your life is intolerable because of a lack of palliative care, you should consider death by assisted suicide. It’s dying with dignity.” To which the response may be given: “but I want to live until the end, and I want palliative care in order to say my farewells. I insist on it”. And the final reply is given: “Look, you can’t get palliative care, so take the lesser evil.” The principle is clear… Choose evil.

Instead of aspiring to the higher virtue and gift of life, we have instead lowered ourselves by systematizing death and by making it “accessible” to the weak, who would not choose it but for lack of palliative care. Before instituting such a system, have we given sufficient thought to those who are in the throes of suffering, who are fighting for their lives and whom we now lead into temptation? We live in a culture of convenience and “access” adorned by the bejeweled language of rights. When will we remove the veil from our eyes and truly see what we are doing?

What we owe to our elders

The Supreme Court of Canada in Carter framed the choice in assisted dying cases as being between “cruel suffering” and “death”. If we had created a different set of circumstances for ourselves, in which no expense was spared to honour our elders and our vulnerable by funding adequate palliative care, would the choice have been between “cruel suffering” and “death”? In Canada, we fund a 200 billion dollar universal healthcare system each year. We spend over 20 billion dollars annually on defence. Are our elders not as deserving of palliative care as we all are to universal healthcare and defence?

As Lao Tsu wrote, life and death are one and the same thread, perceived from different ends. When a child is born, we rally together as parents and grandparents, brothers and sisters, doctors and nurses. Should we not do the same when it comes time to say our final farewells?

Who are our elders but ourselves, floating further downstream on the same river? The choice we have been offered is a false one, foisted upon us by our own collective failure to provide enough palliative care for our weak, our dying and our elders. And now it is them, who gave us life, whom we risk treading underfoot. Is that justice?

The lack of palliative care makes a journey towards death undignified, and it is this gaping hole that makes assisted dying appear to be dignified. But it is palliative care in the first place that makes a dignified death, because the desire for assisted dying evaporates when one receives good palliative care. But the quiet wish for real palliative care does not vanish with the availability of assisted dying. It is the lack of palliative care and the attendant indignity that forces the choice for assisted dying onto a person. But the wish for palliative care remains.

A foundational principle of philosophy holds that a well-articulated problem is half-way towards its solution. The problem here, properly articulated, is why we have arrived at a state of affairs in which assisted dying is seen as a dignified death. What suffering are we refusing to alleviate in order to respect the dignity of human life, and what suffering are we making possible so as to blur a person’s conception of what it should be to suffer, which has resulted in assisted death looking so attractive? The solution, as I see it, is love, not in the form of the syringe, but in the human hands of our doctors, nurses, families, clergy and administrators of palliative care institutions.

I do not want to be the boy carving a wooden bowl for my father. And I do not want my son to carve a wooden bowl for me.

[1] Canadian Hospice Palliative Care Association, “Fact Sheet – Hospice Palliative Care in Canada”, March 2014. <http://www.chpca.net/media/330558/Fact_Sheet_HPC_in_Canada%20Spring%202014%20Final.pdf>.

[2] Matthew 26:52.

[3] Romans 2:6, Matthew 16:27, Apocalypse 22:12.

[4] Matthew 25:40.

[5] Supra note 2.

[6] Robert Bold, A Man for All Seasons. New York: Random House Inc., 1960.

[7] Elizabeth Payne, “Hospitals get secrecy: Assisted dying rules would shield institutions that offer the option”, Ottawa Citizen, 12 November 2016.

[8] Ibid.

[9] Archbishop Terrence Prendergast, “Euthanasia and Assisted Suicide: False Mercies”, 2015. See also Maytal Guy, and Theodore A. Stern, “The Desire for Death in the Setting of Terminal Illness: A Case Discussion Prim Care Companion” J Clin Psychiatry. 2006; 8(5): 299–305.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s