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Suffering with dignity
We must find meaning in dying, to make it the last great act of living.
A friend just e-mailed me an update about a mutual friend. Michael (not his real name) had major surgery for very advanced stomach cancer a year ago. Now he's been admitted to hospital because of excruciating pain. He is weak, dizzy, panic stricken and very upset at being in hospital again. He is also taking large doses of pain-relief medication.
My friend writes: Michael phoned his wife to say the hospital was “starving him” and he wanted her to take him out to find something to eat. He did not intend to tell the hospital staff of this “outing” and said no one would notice he's gone. She refused to co-operate. He got out of bed and into his clothes and, without a word to anyone, walked out, intending to go to mass in a church near the hospital. But it was the wrong time, so he took a bus to another church, heard mass, then walked back to the hospital and treated himself to a coffee in the hospital's café.
My friend goes on to say: I remember about 30 years ago a doctor telling me that all his patients had their clothes taken off them because matron liked to have them all powerless in bed and in pyjamas, but most of them didn't need to be dehumanized like that. Anyway, I'm sure Michael's revolt did him no harm, and restored his self-respect. He feels his treatment is out of his control, he is hungry and, in fact, his life is out of control and he is terrified.
So what lessons can we learn from this sad but everyday story?
Michael's wish to temporarily leave the hospital is a response to two related feelings: First, that his body has completely collapsed and that he's no longer in control of it or what happens to him. And, second, that the “real” him is trapped inside his body and needs to escape. Michael is experiencing intense suffering.
Eric Cassell, in his book The Nature of Suffering and the Goals of Medicine, describes suffering as a sense of your own disintegration and a loss of control over what happens to you. While not all of Michael's suffering can be relieved – for instance, his fear of death, a fear most of us experience – the professionals caring for him have ethical obligations to relieve his suffering to the extent that is reasonably possible and, certainly, not to exacerbate it. That means they must try to give Michael a sense of control.
So how can they do that?
Euthanasia is proposed by its advocates as an appropriate response to pain and suffering, precisely because, they argue, it gives patients ultimate control over what happens to them. But if, for ethical and practical reasons, we believe (as I do) that legalizing euthanasia is a very bad idea, what else can we do to reduce the suffering of seriously ill and dying people?
First, everyone has a right to all necessary pain-relief treatment: We must kill the pain, not the person with the pain. To unreasonably leave someone in pain is a breach of a fundamental human right and a breach of trust.
Trust in one's caregivers is very important in reducing suffering. In the past 30 or so years, we have changed from blind trust – “trust me because I know what's best for you” – to earned trust – “I will show you can trust me and will earn your trust.”
Earned trust requires honesty, and shared information and decision-making, all of which increase the patient's sense of control, thereby reducing suffering. When it's not possible for the patient to be in control, honouring the patient's trust becomes even more important.
We have medicalized, depersonalized, dehumanized and technologized death – and, as a result, dying people suffer intense premortem loneliness. We need to recognize and address that loneliness. Euthanasia is a medical technological response to suffering and death. But in a caring, ethical society, the answer to loneliness and abandonment is not a lethal injection.
We need to understand what seriously ill or dying people require to feel respected. Harvey Chochinov, a Manitoba psychiatrist who specializes in the care of terminally ill people, and his colleagues have developed a treatment they call “dignity therapy.” They identified the elements that contribute to dying people's suffering and designed interventions to counteract these elements. Hope, for instance, is very important in reducing suffering. It requires having a sense of connection to the future. We can give people “mini-hopes” – things to look forward to – even when a long-term future is not possible.
Leaving a legacy also helps create such a connection. Feeling that one's life has had meaning, that it was worthwhile, is important to dying peacefully. People were helped to experience that feeling. “Post-treatment measures of suffering showed significant improvement and reduced depressive symptoms.” Patients reported “life feeling more meaningful and having a sense of purpose, accompanied by a lessened sense of suffering and increased will to live.”
A central element of the essence of our humanness is that we are meaning-seeking beings. The challenge is to find meaning in dying – to make dying the last great act of living. A lethal injection is a simplistic, cheap, quick technological fix. Finding meaning in dying is none of these. But it's probably necessary if we're to find meaning in life and pass on ways we can do this to future generations. Maybe that's one important reason why we've prohibited euthanasia.
Margaret Somerville is founding director of the Centre for Medicine, Ethics and Law at McGill University.
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