Sunsets

A sun setting on a life

Sometimes I think of each of us—yes, you and me—as a sun. That might sound strange—pretentious, even—but hear me out. Some of us are hot, passionate, glowing. Others live in the clouds and are hard to read. Some of us are swept away by storms and calamities. Some are completely absent—as invisible as the sun at night. No matter who we are and where we are, no matter what we have done or not done, no matter how much light we have shed or shadow we have cast, we will all, one day, slip below the horizon and disappear from sight. None of us knows when, exactly, but we do know that our sun will set.

Which brings me to dying with dignity, a very important and pressing issue right now. What do we mean by dying with dignity? In fact, what do we mean by dignity? I must admit that I don’t know for sure. Do we mean dying without suffering? If so, I’m not sure that is even possible. I’m not just talking about physical, somatic, neuropathic, or visceral suffering—all of which are terrifying. I’m talking about suffering in the broadest sense of the term. I’m talking about every kind of suffering. The moral suffering of leaving this life; the sadness of being no more; the sadness of no longer being able to live life. The realization that things are getting worse, not better. Exhaustion.

Fatigue. The pain of losing loved ones. Saying goodbye to plans and achievements. The immutable signs that we have reached the end of the road. Regardless of what people say, I believe that we all die experiencing these forms of suffering. Perhaps some of you are hoping to die while still vibrant and healthy. A Hollywood death in the arms of a loved one. Well. I have news for you. Dying is not easy or simple. It is surely as difficult as being born.

Help!

Imagine that the situation of the dying person has become untenable. Imagine that he or she can no longer live and wants only one thing: to die. Think about one of your patients who has a debilitating disease. Take, for example, the man who only yesterday was a vibrant, skillful, and visionary manager, who is suffering from Parkinson disease. Emaciated, unable to swallow, unable to manage even the most basic bodily functions on his own. Or the natural athlete who spent every summer sailing the waters of Lake Superior on his catamaran. Now, he is ravaged by multiple sclerosis, bedridden, humiliated. Or the hugely talented actor who made us laugh and cry and who has been struck down by amyotrophic lateral sclerosis. Now, she is immobile, silent, out of breath. Or the mother who was always so tender, attentive, dedicated to her family, and loved by all. Now, she lies curled up in a dirty diaper, incapable of understanding what is happening to her. Do I need to go on? Each one of these once vibrant individuals is now bedridden, wasting away, exhausted, despairing. Fed up. At death’s door. We all have had patients like this, haven’t we? And I think we would all agree that all, without exception, lost their dignity a long time ago.

So what happens when they (or their loved ones) look you right in the eye and say that they can’t take it anymore? Ask you to put an end to their suffering? And ask you every time they see you? And what if they (or their loved ones) are of sound mind—perfectly lucid— and their wish to die has been documented and confirmed by more than one professional? This is not some fleeting moment of discomfort or some minor, discouraging setback.

Let’s imagine, for a moment, that legislation like the Act Respecting End-of-Life Care, which was assented to in Quebec on June 10, 2014, and which will go into effect on December 10, 2015, is passed across Canada. And let’s imagine that these patients meet the criteria in the Act for obtaining medical aid in dying:

• they suffer from a serious and incurable illness;

• they are in an advanced state of irreversible decline in capability; and

• they experience constant and unbearable physical or psychological suffering that cannot be relieved in a manner the patient deems tolerable.

What if these patients (or their loved ones) approached you, saying “Doctor, can’t you do something for you-know-what?”

What would you do?

I know many doctors who would not hesitate to say, “Let’s put an end to this suffering.” I, myself, used to think that way. I wrote about it; I proclaimed it loud and clear in my article entitled, “Can we talk about euthanasia without dying of it?”¹ I even asked a friend to help me when the day came, saying, “If I asked you, would you do me this favour?”

Now, I’m not so sure.

I am having difficulty imagining a situation where I have helped a patient for a long time—trying to cure her, caring for her as best I can, listening and offering support, getting to know her, meeting her family—and then, one day, helping her to die. (Cure sometimes, treat often, comfort always.)

I am having difficulty imagining showing up at a patient’s bedside one day and saying, “Good morning, Mr Smith. Today’s the day. You’ve suffered enough. This won’t take long.” That feels very Dr-Jekyll-and-Mr-Hyde, wouldn’t you agree? And I don’t see myself acting like Pontius Pilate and handing off the patient to my colleague, Dr Death, the end-of-life specialist with his cocktail of drugs.

I must confess. I’m thinking, is this really necessary? Is this the right thing to do?

Time passes

Maybe our understanding of life and death changes over time. Maybe we see life and death differently, at different stages in our own life.

When I was a child, playing in the schoolyard during recess, the grade 7 kids seemed so big and so strong. And yet they were only children! And when I went to high school, the grade 12 kids seemed so old. And yet they were still adolescents! The year 2000 seemed so far away. And yet here I am—here we are—still very much alive.

We often say that if, one day, this kind of suffering happened to us, we would prefer to die. And, in fact, many of us will experience this kind of suffering. Right now, we are saying, if I ended up with Parkinson disease, amyotrophic lateral sclerosis, or another disease, I would want to end it. And yet, how many patients have we seen fighting desperately until their last breaths? It’s as though our vision of life changes, the longer we live. You only have to read Tuesdays with Morrie³ to be convinced of this. And I am sure that you have seen this for yourself. Am I right?

Robert Pope, Sparrow. 1991. Used with permission from the Robert Pope Foundation.

Choosing to end it

Sometimes, I wonder if we should have taken the same route as Oregon and Vermont, where physicians can prescribe a lethal dose of medication and leave the final decision up to the dying patient. If Oregon and Vermont thought this was the way to go, why shouldn’t we?

Maybe patients should be able to decide for themselves and we could have this conversation with them.

• You suffer from a serious and incurable illness. You are in an advanced state of irreversible decline in capability. You are experiencing constant and unbearable physical or psychological suffering that cannot be relieved in a manner that you deem tolerable.

• I want you to know that I am here to help you and that I will do everything I can to ease your suffering. But if this is what you really want, here is the cup of hemlock. Do what you think is best for you.

How many accidents are, in fact, suicides? And yet, I think that most of us would continue to live right up to the end. Most patients who are at death’s door continue to fight until their last breaths.

Yes, time passes. And the more time passes, the more we change. So, who knows what we will actually think when it’s our turn? Not an easy question to answer …

Did I mention that, behind my home, the sunsets are spectacular? And that when the sun disappears over the horizon, the heavens are lit up in every imaginable colour— red, yellow, orange, and even violet—each more brilliant than the next?