In a recent case in New Zealand, a man who assisted his wife, Rosie, to die, was discharged without conviction by the court. Rosie was suffering from an aggressive form of multiple sclerosis, with no possibility of remission or reversal, and lived with protracted pain, severe tremors, and was becoming increasingly and rapidly dependent. In her eyes, life was no longer worth living. So she took her life using equipment her husband had, at her request, helped her research and assemble. When she decided the time was right, she asked her husband to leave the house as anyone in the room with her could face more serious criminal charges.
In a video made by Rosie some months before she died, she made it clear that she was euthanizing herself, and that no one had coerced her. This video was one of the deciding factors for the judge when, for the first time in a case like this in New Zealand, there was no conviction. The court’s decision is in line with polls that demonstrate that the majority of New Zealanders believe that assisted voluntary euthanasia in cases of terminal illness and irreversible disease should be legalized.
Because assisting someone to end their life is still a crime in New Zealand, as it is in many other countries and most U.S. states, Rosie had to die alone, without dignity, with a plastic bag over her head and a gas bottle at her side. Her husband suffered the agony of helping her, and then waiting for a court to decide his fate. His “crime” could have been punished by up to 14 years in jail, although previous cases have received minimal sentences of a few months. Perhaps most distressing of all for Rosie’s family and friends was the loneliness of her death. As her husband said, "For Rosie to be that sick and to die alone by her own hand, that's not right. Our family should have been around her to say goodbye."
Assisted voluntary euthanasia—when a patient intentionally brings about their own death with the help of a physician—is a complex, emotionally charged issue. Many people are against its legalization because of their religious, cultural or ethical beliefs. The specter of coercion, or even murder, in the guise of assisted euthanasia is always hotly debated. But equally, others are in favor of assisted voluntary euthanasia because of their belief that everyone should have the right to choose when to die, and to die peacefully and painlessly, if their life has become unbearable because of an incurable illness.
In New Zealand, as in many countries, withdrawing medical treatment that is not effective, or complying with a “do not resuscitate” order, always in accordance with the patient’s wishes, is legal and not uncommon. But withdrawing treatment which may or may not accelerate the patient’s death from their disease is viewed by the medical profession and by ethicists as quite different from giving the patient an injection that ends their life.
Many palliative care experts argue that there is no need for euthanasia, as with modern day medications and care, most terminal patients can be made comfortable until they die naturally. Sadly, some illnesses are so disabling and distressing that the only way the patient can be helped is by dulling their senses so much they are no longer themselves. Many people find this more acceptable than the alternative—voluntary euthanasia. There is no argument that palliative care in cases of terminal illness should always be a choice, and for most people, the best choice. But if I were in that situation, I think I would feel comforted by knowing that if at some point even this had become intolerable, I could bow out at a time and place of my own choosing, without guilt and without putting the people I love at risk.
The aim of palliative care is to support people who are dying so that the process is as peaceful and dignified as possible. There are many situations where a person’s disability is such that palliative care is not the answer. What if the person is suffering terribly from a condition that is not reversible and possibly will not get worse; a person who with good nursing care may not die for many years. Some of the saddest stories that come into the public arena because of legal battles to be allowed the right to die, are those of people with locked-in syndrome. This is a neurological condition that results in a complete paralysis of nearly all voluntary muscles except the eyes. The patient is unable to move or respond verbally although they can still hear, see and understand what is going on around them. Usually they are able to make minimal responses using eyeblinks; one blink for yes, two blinks for no. Around 85 percent of patients with locked-in syndrome are still alive after 10 years.
Thankfully it is an uncommon condition, rarely affecting children as it is usually caused by a stroke in the brainstem. However, in a recent case in England, nine-year-old Eve became locked in after she suffered a bleed from an undiagnosed brain tumor (read here). Her tragic story highlights other issues important in the voluntary euthanasia debate; most importantly, when is a child old enough to make a decision about whether they live or die, and how could parents cope with this? Eve also improved a little following radiotherapy that shrunk her tumor. Being aware that sometimes conditions that were thought non-reversible do show small improvements given time (especially in the very young) or as new treatments are discovered is clearly important when considering voluntary euthanasia.
These stories are moving and painful to read about, but some day we may be in a situation where we have to think about these issues. It may be a sound investment in our well-being. It is very unlikely that most of us will have to confront the concerns Eve and her parents are facing, but normal old age brings with it the possibility of a drawn-out and painful terminal illness, or a very severe stroke that leaves the patient paralysed and unable to communicate. Most of us have parents and grandparents who live to be old, and most of us in turn will get there some day. And it is not only the old who are at risk. Extremely severe head and spinal injuries from vehicle crashes can happen, and do happen far too often to young men in their teens and early twenties.
Even in countries and states where assisted voluntary euthanasia is not legal, you can make a living will. In this legal document you can specify which treatments you do or do not want applied to you in the event that you are no longer able to make decisions for yourself. Usually you would appoint someone you trust to make such decisions on your behalf when you no longer can make these decisions, and this person must be very clear about your wishes. It is important to realize this works both ways; whether you do or do not want to be actively treated in certain circumstances. If you do believe in assisted voluntary euthanasia for yourself in specified conditions, then there is no harm in adding to your living will your wishes about this, whether for or against, in the event that in time the laws about euthanasia may change. Of course, once you have a document like this you must keep it updated to reflect your views if they change.
When I was 17, my mother died after a five-year battle with cancer. That word “battle” is often used in this context, and I know why. Even so, throughout her years of ever more painful illness and enduring ever more radical treatments, my mother always returned home, where she was the center of our lives, always positive and finding new ways to enjoy life. In the last days of her life when she finally had to be taken into hospital, comatose, I remember vividly on that day after school biking around the park, and around again and again, too afraid to go and see her. I finally did, and as I stood alone at her bedside looking at her, her arms tied to the cot sides of the bed, I remember hoping, feeling guilty as I did so, that she would die quickly. I didn’t go back to see her that evening with my father; I couldn’t. She died next morning. Back then I had never heard of euthanasia, and in my mother’s case it wouldn’t have become an issue. But thinking back, I realise I have no idea what she would have wanted, if she had lingered for longer than she did, once her battle was over.
So some day when you are in a good state of mind, healthy and happy, take the time to ask yourself a few questions. If you suffered an irreversible illness that made your life, every minute of every day, a nightmare, and nothing you or others had tried had been able to alleviate your misery and pain, would you want the choice to die with dignity? And an even harder question: if your partner or parent or even your child was in that same situation, would you be willing to support them if they wanted to die? Thinking about these issues in the abstract and perhaps talking about them with those you love will not necessarily predict how you will feel and the decisions you will make if you are actually faced with this in your life, but considering the issues in advance may make future decisions less agonising.