Deciding whether or not to place a Do Not Resuscitate (DNR) order on our loved ones is a common struggle that people in the Huntington's Disease community deal with all too frequently. Most of us are often torn when we are faced with life and death decisions that all too often fall on loved ones to make. For many of us the wishes of our family or those who have been entrusted to our care had been expressed, and sometimes as difficult as it can be, if those wishes are to allow someone to die, we carry out those wishes out of respect even if we disagree with them. All people struggle with this no matter where we stand on the issue - for or against. Allowing someone to die is heart-wrenching, but we often justify it as ending needless suffering. , and in today's society, most people are in favor of allowing people with chronic diseases who wish not to have an intervention to simply be allowed to pass on considering it as a more dignified death.
It is this thinking that brought about the Dying with Dignity movement.
According to their website Dying with Dignity is committed to improving quality of dying, protecting end-of-life rights, and helping people avoid unwanted suffering. Dying with Dignity also:
Defends human rights by advocating for assisted dying rules.
Provides personal support to adults suffering greatly from a grievous and irremediable medical condition who wish to die on their own terms.
Educates people about all of their legal end-of-life options, including the constitutional right to medical assistance in dying (MAID), and the importance of advance care planning.
Supports healthcare practitioners who assess for and provide MAID.
There are many facts that support assisted dying and all of them are valid, giving those who suffer with diseases for which there is no cure or treatments a real alternative, or a way out, so to speak. It also can provide relief to families and friends of those who are suffering who are also in pain from the heartache and stress of seeing their loved ones slowly linger on in what appears to be an unimaginable situation. There are thousands of examples of people in articles and videos that are only a Google search away of people who advocate and are literally begging for this kind of relief, many of whom travel great distances and spend thousands of dollars to end what they feel is a miserable existence.
A 2014 Ipsos Reid poll showed that in Canada 84% of Canadians believe that gravely ill patients should have the right to end their lives with the help of a doctor. With so many people obviously seeing a benefit to assisted suicide, could this way of thinking cause difficulty for those among us who feel that dignity in death means fighting for your life to the end? Or that hold life in such a regard that they respect it no matter the consequences? And could this movement pose a threat to the lives of these people who believe in the sanctity of life and feel they still have something to live for?
Dying with Dignity says no, but when such a large amount of people begin to lower their regard for life, those on the side of life have to keep their guard up. One Nova Scotia woman, stricken with Huntington's Disease had a brush with this kind of thinking. It has to do with medical ethics. Do those who are medical professionals keep a person alive who by looking at her has no real quality of life? And what if the patient implies that she wishes to die? Medical professionals may feel as though they are doing wrong if they feel they are lengthening the duration of a person's life which also lengthens their suffering. In this woman's case she needed Optiflow oxygen for a few hours as her oxygen levels were going down and most likely would have led to her death. When the medical professionals went to apply the oxygen mask she stated that she wanted to "go home."
This created an ethical issue in the hospital as they felt that she had implied she wished to die. It was a religious issue since in many religions the term to "go home" means to go to Heaven, thus dying. Therefore, since medical professionals have the right to refuse life-saving measures in the event that someone whose prognosis shows no chance of improvement, and they "imply" that they do not wish to live, they could be in danger of not receiving treatment. In this case, she was from a Christian family whose beliefs do not coincide with the religious beliefs of those professionals that claimed she meant she wanted to die. The patient had no such belief that she would go to Heaven and when her decision maker interviewed her and asked her if she wanted to die or if she had told anyone that she wanted to die, she was not only clear about not having a death wish but that she had not stated any such thing. A short video of that interview is below.
It cannot be stressed enough for anyone to be clear as to their wishes. End of life planning may seem morbid and uncomfortable to discuss, but it may help families in the event they are faced with these decisions and could avoid making a sad transition, problematic at a time when people simply need to be close to each other. It is important to note that the Nova Scotian woman has now been medically discharged and while there is no cure or treatment yet for Huntington's Disease, she is happy and enjoys her life.
The opinions expressed in this article do not necessarily reflect those of WeHaveAFace.