These themes are rattling around in my brain, and I would like to share my thoughts.
Death With Dignity
“Death With Dignity” is the phrase I heard when I recently attended the 20th annual biennial conference of World Right To Die Societies, in Chicago. I listened to speakers from some 27 countries and many states describe what legislation has been passed in their jurisdictions or what means they have taken to enable people to hasten their death with dignity, control and choice, when prolonging life has become intolerable.
Bishop Tutu spoke to the conference via video about the need for such freedom of choice, having come to this decision after watching Nelson Mandela suffer in pain for the final five months of his life.
Sean Davidson from Cape Town, South Africa told us about his aged ailing mother. He described her rich life and the love he had for her. During her final days, he went to be with in Dunedin, New Zealand. As her pain and suffering dragged on, she told him she was ready to go. She was determined and refused food and liquids, hoping to hasten her death. Her plan was not well-executed, however. Dehydration will hasten death, but she continued taking liquids and, after five weeks, she continued to live, She pleaded with Sean to help her die. He obliged by giving her a shot of morphine. Then he watched her die a peaceful death.
As I listened to his story, I was filled with compassion and respect for him. I wondered if he’d felt himself to be in a dilemma. Then it occurred to me that there was no dilemma. He cared for her, did not want to see her suffer, and he knew what she had completed a good and full life. This is the subject of his book, Before We Say Goodbye.
The story doesn’t end there, however. Several years later, back home in Cape Town, he published his diary and informed his siblings of his action. He was ultimately charged with criminal behavior and kept under house arrest. You can read about his experience in his book, After We Said Goodbye: The price of helping my mother die.
His story reminded me that not everyone agrees that aiding death in a case like this is the right and compassionate thing to do. Why is it considered illegal in some places to enable people to choose a peaceful, dignified death – when it is legal to end one’s own life by jumping, drowning or shooting oneself, but getting assistance to end life in a humane way is not?
My pet-owner friends who have reached the tough decision to “put their pet down” tells me that we treat pets more humanely that we treat our aging parents.
Communication About Death
That’s when my thoughts about communication kicked in. As a communicologist, I began focusing on the words that are used to talk about end of life wishes.
One word used is “choice” – not advocating an early death, not encouraging or advocating for another person – but allowing individuals to have the means to end their life (or be assisted by someone) when extending life (or prolonging dying) becomes intolerable.
Another term is “rights.” If patients have the right to healthcare, do they also have the right to deny healthcare that will extend their life? Refusal of treatment IS legal. And do they have the right to seek assistance to end their life? Who owns the life?
Closely related is talk of “autonomy.” The Advanced HealthCare Directive is a major step forward in allowing people the “right” to “choose” a measure of care or to refuse it. But currently the law does not allow individuals to include in their advanced care directive if they want their physician to assist in hastening death, when they are ready. (The Advanced Healthcare Directive only goes into effect when persons can no longer speak for themselves. At this point, they would be incompetent and no longer eligible for assistance in dying, in most jurisdictions.)
Where the law allows physician’s assistance in aiding death under certain conditions, concern arises for something called a “slippery slope.” As the law stands now, individuals have the option to seek assistance in dying from a physician in: Oregon, Washington, Montana, Vermont, the Netherlands, Belgium, Luxembourg and Switzerland. Each jurisdiction is slightly different, but all have provisions that ensure that such a final decision is made only after the patient who is enduring unbearable and hopeless suffering has received an informed prognosis, it is determined that there are no reasonable alternative, the patient is of sound mind, and an independent physician is consulted. In some cases, the patient must be deemed “terminal.”
The law does not allow physician assistance for someone suffering from dementia, or psychiatric disease, old age (referred to as the “completed life”), or prolonged suffering though not terminal (as might be the case with ALS). (In the United States there is a service known as Final Exit Network that will provide information and support in the home anywhere in the U.S. for individuals wishing to hasten their death. Since terminal illness is not a criterion, people with early dementia who are still competent can available themselves of this service.)
The term “euthanasia” is used only in certain locations. In the Netherlands “voluntary euthanasia” is legal. Unlike other jurisdictions, a physician may administer the lethal medication.
Another term that raises concern is the word “suicide.” There are those in the movement that wish to reclaim the word. Others wish to avoid it and prefer the phrase “aid in dying.” In some cases, calling the event “suicide,” instead of assisted dying or voluntary euthanasia, would negate an insurance claim if the policy has been held for less than two years.
The word “aid” is another term that must be carefully understood. What is considered “aid?” Some will say it means providing lethal medication or other means to end life. Others will interpret “aid” as meaning providing information on how to obtain such medication or means. In a court of law the definition of such a term becomes essential.
The end of life is a part of life. Everyone experiences it. Although it is a difficult subject, it is one that cries out to be discussed. In the process, words can present stumbling blocks. “Suicide,” “euthasnasia” “aid,” “slippery slope.” What do these terms mean? “Choice,” “rights,” “autonomy,” “dignity.” What do these words mean?
If there is agreement that one’s death should be peaceful and with dignity, perhaps we need to get beyond words and enter into discussion.
~ Carolyn Shadle
P.S. I know reader of this blog spot are accustomed to reading our posts about organizational communication and management. We decided to take a break, however, to bring you our new awareness. I hope you will find it useful.
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