My mother matter-of-factly told me yesterday that she was no longer going to get mammograms. This proclamation stunned me, coming from my breast cancer survivor mother. My mother has always been proactive when it came to her health. A life-long advocate of vitamins and supplements, she never missed an annual appointment, dental cleaning, or vision exam. She was fastidious about her colonoscopies and Procrit shots. So when she informed me of her new position, I was caught completely off guard. She went on to clarify her perspective: “I am 87 years old. If they find something, I am not going to have an operation to take care of it. And I’m not going to have any long drawn out treatment that will only prolong my illness, that won’t cure me. I will take measures to be comfortable, but I am not being cut into at my age.” That’s my mother. Determined and in control. Always.
This new declaration came after one she had told me six months previous: That when the time came and she decided she didn’t want to live anymore, she was going to stop eating. “And don’t you try to make me eat. I wont. I’ve read all about it. I’m going to stop eating and I will gently fade away. On my terms.” And that is the way it will be.
This new realization that she shared with me gave me pause. Not about my mother, because I knew she was right, absolutely. I completely agree with her position. But it made me think about our elderly citizens and questioning if their rights are being met. Are they being allowed to die when they want to die? Do they get to choose how they die if they are suffering from a terminal illness? Do they have to suffer? Should euthanasia or physician-assisted suicide be legalized? This is an unpleasant topic to discuss, to be sure. It’s difficult enough to make arrangements with your parents or spouse for a Durable Power of Attorney, determining what measures should be taken if you are considered brain dead and should be put on a ventilator. Under what circumstances should heroic measures stop? No one likes to think like that. But people who think ahead, people who don’t want family members to be burdened or fraught with the angst of making a life and death decision, plan for exactly that. I know for my mother it gives her great comfort knowing that there is a plan of action that she helped develop. We will do it her way, not what we think she wants, because she told us precisely what she wants. She is in control of her life and her death. And isn’t that the way it should be?
When Vermont announced last spring that they were joining the ranks of Washington State, Oregon, and Montana, all of which have legalized Physician Assisted Death (PAD) my mother and most of her neighbors in her 50 and above retirement community were very pleased. But there were a few who thought it was wrong. Their religion didn’t allow for that. They were “good Catholics” and the Catholic Church holds “sacred both the dignity of each individual person and the gift of life.”
The Church has three binding tenets. It states it is considered an evil action if anyone attempts to kill an innocent person. “Second, each person is bound to lead his life in accord with God's plan and with an openness to His will, looking to life's fulfillment in heaven. Finally, intentionally committing suicide is a murder of oneself and considered a rejection of God's plan.” It would be considered murder on the part of the physician. How can a “good Catholic” possibly agree to PAD or euthanasia?
In the sixteenth century, Thomas More, better known as the Catholic’s Saint Thomas, in describing a utopian community, “envisaged such a community as one that would facilitate the death of those whose lives had become burdensome as a result of ‘torturing and lingering pain’.” St. Thomas not only supported it, he worked to pursue it.
Jack Kevorkian, better known as Dr. Death, made it his mission to help terminally ill patients end their lives. As an advocate for the terminally ill, he challenged the social taboos of disease and dying, and believed that he was helping to end the unnecessary suffering of people. It is believed that he helped 130 people end their lives, and although he was arrested, tried, and found guilty of second degree murder of his last patient, Dr. Kevorkian helped promote the growth of hospice care in the United States and made the medical community more sympathetic to those in unbearable pain. The Detroit Times reported that “Jack Kevorkian, faults and all, was a major force for good in this society. He forced us to pay attention to one of the biggest elephants in society’s living room: the fact that today vast numbers of people are alive who would rather be dead, who have lives not worth living.”
The American public remains deeply divided on the question of whether to legalize physician-assisted death. Those who oppose it feel that it is categorically wrong to purposefully help someone die. Instead the physicians should offer excellent palliative care to the patient. Palliative care is a team approach that focuses on improving the quality of life for the seriously ill patient and his family. Not only is the patient getting management of their pain and other symptoms by experts, because of their close communication as a team they are able to better navigate an often confusing healthcare system. They are given guidance through difficult and complex treatment options, as well as emotional and spiritual support for the patient and the family. The American Medical Association and American Geriatrics Society are against assisted death. They are apprehensive to link PAD to the practice of medicine for fear of damaging the integrity and image of the profession. The Hippocratic oath states, I will "be of benefit, or at least do no harm." Thus they believe “Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer.”
Being labeled as “terminally ill” is a judgment call. Physicians have to weigh all the quantitative and qualitative data and then come to a medical decision about the status of that illness. What if their decision proves inaccurate? What if they haven’t examined all the variables? What if they discount the qualitative data and focus solely on the quantitative data? Will they not arrive at a different decision if the physician downplays what the patient and families have said and instead focuses on blood pressure and urine output? Another physician who focuses equally on both will certainly make a different decision. Take for example a patient with Parkinson’s disease. Parkinson’s Disease is unquestionably a terminal disease. Unless they die from another unrelated cause, they will die as a result of Parkinson’s disease. That’s why the states that allow P.A.D. have stringent guidelines that mandate that an entire team including the patient and family members make those kinds of decisions together.
Those same questions need to be talked about regardless of your or your loved one’s perspective. For instance you have to consider if you are the patient, when you think it will be the right time to let go. Likewise, religious beliefs are deeply personal. So you and your loved one must consider those deeply held spiritual beliefs in whatever decision is finally made. You have to have that conversation before hand. Because if you don’t know what your loved one’s true desires are, too many things can get in the way; conservatorships, powers of attorney, wishes of other family members who didn’t have that conversation. All of those things can interfere with the patient’s true wishes. Finally, we must reshape our views to acknowledge death as a natural last step in the progression of aging and of disease.
Providing care for a dying patient is challenging and, when done well, a meaningful and gratifying experience for the physician. To help someone die in comfort, in peace, and with dignity is to give one final gift of life. No matter what camp you are in, whether it is my mother’s camp ending your life by not eating, or letting nature take its course without intervention, or persuing physican assisted death, you need to have that conversation with your loved one. You need to have that conversation now.