Arnold Tweed
The wisdom literature of our cultural heritage often provides remarkable insight into current issues. We are now in the midst of a national debate, particularly challenging to the medical profession, on choosing the time to die. This is a very old question, addressed in Book 21 of the Old Testament, Ecclesiastes (3:1-8) in a passage often quoted at funerals: “To everything there is a season, and a time to every purpose…a time to be born and a time to die…” In Ecclesiastes one’s role and tasks are defined by divine order and the time to die is part of His plan. The right time is when one’s appointed tasks are finished, when one has fulfilled his role in creation. But this is not much different from the evolutionary world-view where our place in the natural order and time of dying are also determined for us, not by a divine plan but by random selection. Both theology and evolutionary science describe a natural order, a cycle of life, and a time when that cycle is complete. This acceptance of life and death as part of the natural order was brought home to me by one of my most memorable patients, Mrs. Lena B.
I was a junior resident on the medical service in the autumn of 1970. We admitted an old woman from the ER to a medical bed, mainly because there was no other place to send her. Her admission history was not exceptional. She lived alone in a small apartment and had managed, in a way, until now. A neighbor, who looked in on her regularly, had called an ambulance because Mrs. Lena B. could not, or would not, get out of bed. We had no medical history and, even with an interpreter, were unable to elicit anything of significance. However, bit by bit, we were able to piece together a social history.
Lena B. was a survivor; she had survived both poverty and persecution. During the Stalin era she escaped from the 1932/33 famine in the Ukraine, walked for days carrying her two children, and eventually got to Sweden. Her husband had been ‘drafted’ into a work camp and she didn’t see him again for almost 10 years. Eventually she made her way to Canada and eked out a living working in a factory. It was enough of a living to educate her children, keep her husband supplied with cigarettes and a little whiskey, and with just enough left over to sustain her. Now, her husband long dead, her children dispersed, she had lived like many other old widows: her church and a few old acquaintances her only interests.
Lena did not refuse to leave her bed; she simply did not cooperate. Neither did she converse, eat or drink. She answered questions appropriately in her mother tongue but was otherwise passive and seemingly unconcerned with our attempts to stimulate her. She did not exhibit signs of depression or psychosis, nor a medical condition that we could identify, other than old age, and therefore there was nothing to treat. Tube feeding and intravenous fluids were considered but we didn’t have a diagnosis to treat, had no permission to intervene, and were uncertain what to do.
Lena died quietly on about the eighth day after admission, with no medical diagnosis and no active treatment. The cause of death was heart failure due to “old age.”
In the years since I have often questioned our decision not to intervene more aggressively in Lena’s care. However, at the time, her disinterest in living seemed clear and aggressive intervention looked to us more like assault than treatment. In retrospect her life and death were the embodiment of Ecclesiastes: her tasks had been accomplished; the cycle had been completed; her time had come. Of course, at that time physician assisted suicide was both illegal and unthinkable and, even now, she would not qualify. She exercised her autonomy in the only socially acceptable way available to her; she didn’t actively seek death, she simply stopped living.
Our attitudes towards death and dying have undergone dramatic changes, largely because we now accept that these are in the domain of individual rights and autonomy. Decisions about life and death, formerly left entirely to external resolution (either the divine or natural order) are now matters of personal concern. Only a few years ago both abortion and assisted suicide were unthinkable; now they are almost commonplace. Prior to 2015 aiding or abetting anyone in committing suicide was a criminal offense. This changed with the Supreme Court decision (Carter v. Canada) in 2015 that these laws denied Charter rights and consenting adults with “grievous and irremediable” medical conditions should not be denied the access to assisted death. The new Liberal government (this is now 2016) has proposed legislation, Bill C-14, that would allow MAID (medical assistance in dying) with strict constraints; these constraints are now the topic of intense debate.
We have not seen the end of this debate. The legislation being currently debated, Bill C-14, is not broad enough to satisfy all. It places definite limitations on MAID: in particular patients must be mentally competent and able to consent. This excludes, for example, those with Alzheimer’s or other forms of dementia who may meet the other criteria but, for reasons of age or mental capacity, are not considered competent. There may be a provision to honor advance directives, but only if made in that small window of opportunity after the disease had been diagnosed but while the individual was still mentally competent.
There are important ethical and social issues at stake. Society and the Courts have agreed on the general principle that one’s life is a personal possession; it does not belong to God or the state; it is ‘my life’. We have also agreed, through the Courts and Parliament, that it is legally and socially acceptable, under some circumstances, to request and provide medical assistance in dying (MAID). Those limitations are now the subject of debate and the dilemma is to draft rules that satisfy the demands of individual autonomy while at the same time providing acceptable protection for the vulnerable.
MAID places a heavy responsibility on medical doctors, a responsibility they fear that could lead to misuse or coercion. The conditions for MAID all require subjective medical interpretation. The first is to determine what medical conditions are eligible. The official (legal) definition of the Supreme Court states only that they must be “grievous and irremediable,” a rather broad description that includes congenital disorders, mental illness, Alzheimer’s and other forms of dementia and chronic disease. The next condition addresses the stage of the illness: “an advanced stage of irreversible decline.” Stable conditions, no matter how grievous, need not apply. Projected length of life must also be considered: a natural death must be “reasonably foreseeable.” Don’t apply if your problem is low-back-pain; it may be intolerably painful but not lethal. But “enduring suffering that is intolerable to the individual” will be a consideration. How much suffering is intolerable is, of course, a personal decision. Most restrictive is the requirement that the applicant must be mentally competent to give voluntary consent. This is necessary to protect the vulnerable (including minors) from exploitation, but also excludes a large number who may fulfill the other criteria.
We should understand where MAID stands in relation to current medical practice. The object of MAID is to deliberately hasten death in a competent and consenting adult. Moreover, it is to hasten death as the primary intent. Hastening death in the terminally ill as ‘secondary intent’ (or unintentional) is unavoidable in palliative medical care. We understand, clearly and without equivocation, that potent drugs which are necessary and desirable to relieve the symptoms of pain, nausea and fear, may also shorten life. Patients, doctors or the law have never questioned the ethics or legality of this practice. This might also be called the doctrine of the ‘lesser evil’, where withholding treatment and tolerating unremitting and unrelieved suffering is the greater evil. In MAID there is no excuse of ‘secondary intent’, relief of symptoms is total and permanent. Life itself becomes the ‘greater evil’.
How do we see this issue unfolding? First, in recognition of personal autonomy and one’s right to decide, I believe there should and will be increased emphasis on ‘Advance Directives’, essentially end-of life-instructions. This might even take the form of a simple statement. “when I have reached a stage of dementia when I do not recognize or appreciate family and friends I instruct you to euthanize me.” But who is the “you” who will make the decision that it is time for me to go? Certainly, in order to protect the vulnerable (that is me), it should not be someone who will gain from my death. This excludes my doctor, because he will get a fee and get rid of a nuisance, and my family and beneficiaries. In fact, it excludes almost everyone I know. The only situation that I can conceive that would protect my vulnerability would be to pay a disinterested third party a fee every three months to examine me and pronounce me ready or not ready. In order to continue collecting fees it would be in his interest to pronounce me “not ready “and thereby collect the next quarterly fee. His interests would therefore counterbalance the interests of those who might benefit from my departure.
Since Ecclesiastes was written we have come a long way in our thinking about the time to die. There are many who are kept alive beyond their ‘appointed’ time while others will be assisted to die in advance of their ‘appointed’ time. Lena B. was the exception, not the rule, but her choice foretold the future. The time to die can now be framed as a personal decision and we have the option to exercise that right. Each of us can decide which is the greater evil: on the one hand to live on in helpless incapacity or mindless dementia or on the other hand to ignore natural law and prearrange our demise. Fortunately, we now have the means to exercise our choice by writing advance directives. Just be sure they are directives that can and will be honored. Perhaps the greater evil is to make no plans and leave the decisions entirely to others.
Postscript: Since posting this story I have had an interesting email from my friend, Mike Czuboka. He suggests that patients with terminal illness may fear intolerable pain more than they fear dying. This is a medical problem for palliative care physicians. I have observed instances where medical professionals were unwilling to prescribe or administer sufficiently large doses of narcotic analgesics for fear of making the patient addicted. This is absolute nonsense in treating terminal disease. What does it matter if I become addicted in the last days or weeks of my life.
Pain can always be treated and large doses of morphine are one very useful option. Of course morphine, like all potent narcotic analgesics, has side effects, and these may hasten dying. For many that is a reasonable trade-off and I consider morphine to be the dying patient’s best friend.
Thank you again Arnie. Wonderful story. It is a bit of a dilemma – well, perhaps not so much a dilemma as a situation – that we face regularly in the ER. I am so glad that we are finally coming to the point that we can treat our loved ones in the end game as well as we have been able to treat our beloved pets for decades. A transition with dignity.
Mike