Clinicians in Intensive Care Unit. Wikimedia Commons

Questions of Life or Death

She was an atheist and outspoken “right to die” and “living will” advocate. But the life of Sylvie Ménard was affected by another illness: her own. We interviewed this woman whose heart and mind were changed by the facts staring her in the face.
Matteo Forte

“It’s not illness but life that’s incurable.” Sylvie Ménard, 64, married with one son, an oncologist at Milan’s Tumor Institute, is frank. Ever since she discovered she had bone cancer, she’s had a different take on euthanasia. A patient’s illness is not something apart from their humanity or expectations. As a member of a committee of doctor-patients appointed by the Health Minister “to humanize medicine,” she believes it is impossible to treat pain while ignoring the urge to live that we all have within us from birth–an urge to live that may actually be heightened when we get cancer. Family affections rediscovered in the experience of suffering and the banks of evergreens that brighten her office are all signs of the same urge. During our conversation, she receives a call from an anxious patient. She is reassuring: “Listen to your son,” she says. “A mother should always listen her son.” And then: “Keep your morale up, otherwise the medicines won’t do any good.” This call came in the middle of our discussion and confirmed her stance in practice of her newfound convictions.

Dr. Ménard, you were in favor of euthanasia. Now you’re against it. Why?
I was a student of Dr. Umberto Veronese, a great mentor. He always supported euthanasia, so now he’s launched the idea of the “living will”–you have the right, when you’re well, to say how you want to die. I used to be firmly convinced we should decide our own fate. Then, when I fell ill, my perspective changed.

How did it happen?
I realized, above all, that when you get sick, death is no longer virtual, the death of the other, but is part of your own life day by day. You feel it pressing on you. And the closer you feel to death, the more you say, “I’ll do all I can to live as long as possible.” Before falling ill, I was ready to say: “Extraordinary medical treatment or these medicines we know nothing about… Heavens, no, I don’t want them.” Today, I will do any thing that offers me hope. But I also say, “I don’t want to feel pain.” It’s a rule of mine not to suffer.

The “right not to suffer” is the principal argument used by supporters of euthanasia. Why do you feel it’s not valid?
Instead of persuading a patient to seek euthanasia because he’s suffering, the best thing would be to save him from suffering–and not just because pain therapies have made giant strides in recent years. People generally support euthanasia for two reasons. The first is because they don’t want to end up bed-ridden and completely dependent on others for all their physiological functions–theeating, washing, and so on. As long as we’re self-sufficient, life is considered worthwhile. When we’re not, people claim the “dignity of death,” which is terrible. It’s like saying: “Everyone who isn’t self-sufficient but bed-ridden and perhaps in pain is leading a ‘worthless’ life”. So we’ll let them die so as to regain their dignity. Apart from being horrible, this attitude harbors the risk that a right of this kind might become a duty.

In what sense?
A person who feels he’s a burden to his family because he’s not self-sufficient, knowing euthanasia exists, will feel almost duty-bound to remove the burden. It seems that here we’re going well beyond the other side of humanity, of the so-called “freedom to do whatever we want to.” I haven’t the freedom to take a hammer and hit you on the head. So it’s not true that we’re free to do whatever we want. Then there’s the second problem. Patients often get depressed, precisely because they feel they’re a burden and are suffering acute pain. Depression is something pretty much all patients experience sooner or later. Giving them a paper to sign authorizing the doctor to have them put down is like seeing someone on the parapet of a bridge and giving them a push instead of holding out your hand to help them back.

Those that claim the right to euthanasia would object: “But it’s a free choice for every individual. You’ve chosen to live, but why deny someone else a different choice?”
I believe no one in his right mind wants to die. It’s not in human nature to desire death. The instinct of self-preservation and survival is always stronger; the urge to live prevails. The right to die doesn’t make sense. No amount of depression or sense of worthlessness and pain can be reasons for asking to die. These situations are potentially reversible. It’s not illness but life that’s incurable. No one is going to survive life. It’s said that if a single month of life is all that remains, then it’s not worth living. But if one month isn’t worth living, it won’t be worth living two, either. Go on like this, and we’ll kill off all our children. They’re going to die anyway; they’re incurable; none of them will live longer than a couple of centuries. But if I have three days to live, why not live them? Three days are worth as much as three thousand times three days. If I have a family and they surround me with their affection, why give up these three days? And if someone isn’t in the best of health and is bedridden, but still has the affection of the family, I believe even in that state life is worthwhile.

So, the majority of doctors are not in favor of euthanasia, as some would have us believe?
Let’s begin by saying that among supporters of euthanasia there are doctors and then there are doctors. The pathologist, who only see parts of dead patients, may be more inclined to share the opinion of the person in the street. But the doctors whose opinion you need to get are those responsible for palliative care, who look after patients in the terminal phase. Of these, at least among the ones I’ve known, there isn’t one who supports euthanasia. A palliative specialist, who had done this and nothing else for fifteen years, once told me, “A patient at death’s door needs to be accompanied until he dies by seeking to save him from suffering, giving him whatever will enable him to meet death serenely.” Only one of my patients ever asked me to help them die. One! So it’s not true that the terminal patient wants to die, not in the least.

A conference recently presented the results of a survey. The Canadian government commissioned an oncologist to assess the need for a euthanasia law. The survey showed that very few terminal patients support euthanasia; they feel it’s pointless, meaningless. Those favorable, however, tend to want it for their neighbor in the ward, for the “right” of the other, not themselves. And then, those who supported euthanasia at the first interview had already changed their minds by the second, due to fluctuations in their emotional state. If I’d drafted a living will three years ago, I would have written one set of instructions, then when the diagnosis arrived I would have changed them completely, and now they’d be different again. Death when you’re in good health is purely theoretical, something that affects other people. A healthy person who proclaims support for euthanasia actually has no idea what they’re going to think when they’re ill.

The issue of the living will takes us straight to the case of Eluana Englaro, the girl in Lecco in a neurovegetative state. Some weeks ago, the Court of Appeals handed down the criteria to be adopted in deciding when it’s lawful to continue feeding her.

I also read the interview with Eluana’s friends, who say that when she saw someone in a wheelchair she said, “Oh, I could never live like that.” It’s not true that people can’t live like that, and you get the proof when young people have an accident and end up in a wheelchair. They live their lives with great courage and patience. It’s not true such a life is not worthwhile; it’s absurd to say it! That’s just the pride of the healthy.

So what are the implications?
When someone ends up in that state, you realize he has to come to terms with what has happened. No one wants to end up like that, no one in their right mind wants to die, but the closer death comes, the more you change your mind. Forget about the right to die! I now claim the right to live! I’m ready to fight for patients’ rights to all the therapies they need, including painkillers; otherwise, we’re failing to provide treatment. When everyone has this right, when every patient is accompanied in illness, not by giving the family money but by providing care by dedicated, competent, understanding, and humane personnel, then we can review the issue of euthanasia, if necessary. With euthanasia, medical science is not asked to cure the illness; the patient is asked to cure himself. If a patient asks me to let him die, it means I’ve failed to do my duty as a doctor. In Holland, where euthanasia has been legal for about five years, I believe, some ten thousand patients ask to die every year. Ten thousand. It’s a massacre. A society where ten thousand patients ask for an early death every year is no longer a civilized society.

Let’s go back to the Englaro case…
I’d like to know where some people get their convictions from. How can you be confident those cerebral waves that show up on the monitor are not life? A dead person doesn’t have any cerebral waves–here medical science agrees with us. The problem is those waves. Where’s the neurologist who can say, “Those waves are worthless?” Who knows if she isn’t thinking about something wonderful, if she isn’t in another world, experiencing something pleasant and worthwhile? Of course, I don’t know the answer, but I believe no one does. Do we always use “worthwhile” or “worthless” just to mean “we’re up to the mark,” “we’re in good shape?” Just because the patient can’t talk to us or her family any more, and no longer has any reflexes, does that mean she’s unworthy? I don’t know. I can see that a nurse who shirks her duty or a doctor who neglects her patients is unworthy. I’ve seen photos of Eluana and she doesn’t seem to be suffering. They say she’s vegetative, but vegetables don’t have a brain or cerebral waves. Eluana looks vegetative to us, because we use her lack of response to us to justify calling her a vegetable. I believe that as long as there are cerebral waves, we can say there’s life. She’s not worthless just because she needs life support. This is no disgrace; there’s no reason to say, “I can’t stand this.” I call this arrogance. “I couldn’t stand not being independent in my physiological needs.” Are you joking? You’re so proud you wouldn’t accept a state like that for yourself? Who are you, to have this high opinion of yourself? You couldn’t put up with it, but a lot of people put up with it willingly. There are patients with Lou Gehrig’s disease that write books by the movement of one eyelid. We should acknowledge that these people have the courage of lions. Accepting euthanasia would be like a slap in the face. It would amount to saying, “Your life is worthless. We have everything and know everything; we’d be willing to die rather than live like you.” I think it’s inhumane. You see, we started with a right but, then, it leads you to things that are unreal and inhumane. Inhumane above all.

What are your current concerns?
I belong to a group of people who are wrestling with an issue: how to humanize medicine. Over the years, medicine has become increasingly technological and physicians are increasingly specialists. The result is that sometimes the patient is no longer seen as a person but as so many bits and pieces. What’s lacking is someone who can put all these pieces together. The patient is neglected with his anxieties and questions. The Ministry has created a commission by appointing a number of sick doctors, who can see the health system from both points of view, both as physicians and patients. Our contribution is to identify the failings of the health system–those that can be righted and those that are structural. For instance, think about choosing the place to get treatment and having a better chance of living a little longer. Here, patients are left completely without guidance. They trust hearsay, the advice of friends, in an effort to clutch at something real, the best treatment. For many, me first of all, the fear I’ve failed to do my best for a patient is very distressing.

The Health Ministry should have a list of specialist centers showing the number of cases treated and assessments of the quality of the treatment. This is one of our proposals. We also recommend that the situation needs to be taken in hand in the medical schools. A medical student can’t be a bad communicator. There are doctors who never even look their patients in the face. The patient in the hospital has the right to talk to the doctor once a day. If this talk is conducted humanely, the patient will pass the remaining twenty-three hours and fifty-nine minutes quite serenely without the doctor. Of course, these things seem obvious, but they become more obvious when you actually experience them. Humanization and euthanasia seem to be two different approaches, but in reality they’re closely related. With a truly humane medical practice, there would be no need to argue over whether the patient wants to live or die. The problem would never arise.