**NOTE: All names, basic demographic information, and identifying symptomology in the following story have been changed to protect the healthcare privacy of individuals involved.**
One of the hardest cases I was ever asked to evaluate was that of a woman named “Betsy”. Betsy was a 57-year-old female, diagnosed with Chronic End-Stage Renal Insufficiency, and she suffered a plethora of physical pains and problems as a result of her disease. She had neuropathy (nerve pain) in both her legs and hands, edema (severe fluid accumulation) in her legs, pressure sores on her buttocks and thighs the size of a fist, and she was wheelchair bound. She also was diagnosed with Type II diabetes, which was causing progressive blindness and extremely poor wound healing. Betsy had been in constant pain for well over two years and she was aware there was no “cure” available to her…only palliative care for her discomfort. Her tissues were slowly rotting away and it would most likely be only a matter of time before she died from infection. Betsy also went from her nursing home 3X/week to renal dialysis because her kidneys had ceased to function altogether several year’s ago. Her mind remained intact, but her body was slowly dying.
I was asked by the nursing home staff to come evaluateBetsy because she was refusing to continue her dialysis treatments, which would surely kill her in a matter of days (Chronic End-Stage Renal Insufficiency is not a terminal diagnosis, unless dialysis is NOT performed). The care staff felt Betsy must have become severely depressed (and therefore, suffering a mental disorder) and she must be refusing dialysis because she was suicidal. They wanted me to lock her up in a psychiatric hospital as a means of “forcing” Betsy to comply with her dialysis treatments. Of note: Betsy had no documented history of depression or any other mental disorder for that matter. She also remained competent to make healthcare decisions for herself.
I made my usual investigative calls to Betsy’s children and discovered she had been discussing with them the idea of stopping dialysis for quite some time. Her children were not “happy” with their mother’s decision, but all agreed they would support her choices because they could hardly bear to see her in so much pain. The children also confirmed Betsy was of “sound mind” and had no prior history of depression.
I went to visit Betsy and, after informing her of the legalities of my interview and possible outcomes, we talked for nearly an hour. I completed a basic mental status exam with her and found no gross evidence of mental disorder. She even laughed when I carefully broached the subject of auditory hallucinations saying, “Well, I only hear YOUR voice right now. But since I can’t really see you too well, I suppose you could be in my head!” I soon discovered Betsy was far from “crazy”.
We then discussed her understanding of what would happen if she did not receive dialysis. She told me, “I will die and that process will be painful, too. But at least I will know IT (increased physical pain brought on by complications of renal toxicity) will end eventually. I have suffered THIS pain long enough.” Betsy was making a conscious and competent decision to control the only thing she must have felt she had left to control: her own death.
I advised her I did not find evidence of a mental disorder and, therefore, could not legally force her into a psychiatric hospital. I thanked her for her time and told her I felt fortunate to have met her. She was too blind to see the tears well up in my eyes, but she must have sensed the hesitancy in my handshake. Her last words to me seemed so simple, but somehow so complex. She told me assuredly (and probably to ease my mind), “You know, I’m NOT committing suicide here. I’m just refusing medical care.”
I have a Healthcare Advanced Directive in place. I consulted an attorney shortly after I was diagnosed with MS to draw up legal papers protecting my rights should I become incapacitated and unable to voice my wishes because of physical illness. My directive gives the medical community explicit instructions to withhold extraordinary means of prolonging my life and also to withhold nourishments, antibiotics, etc. It lets my doctors know they can and should administer only palliative care for comfort measures. I am, in essence, refusing medical care before it is even needed or offered.
So, am I instructing the medical community to allow me to commit suicide in the face of a terminal illness or irreversible incapacity? Am I simply committing suicide by the willful act of omission? Am I acting against the laws of nature (and perhaps a higher God?) to NOT accept any treatment available to prolong my body’s existence? Am I truly “suffering” if I am not consciously aware of my condition?
I know what my thoughts, feelings, and responses are to the above questions. Have you thought about yours? If not, I encourage you to explore your thoughts and feelings about these issues BEFORE a medical crisis forces you into contemplation.
Someone once said (and pardon me for refusing to reveal my source), “It is in dying we truly learn to live and we die a thousand little deaths before we close our eyes to eternal sleep.” The diagnosis of Multiple Sclerosis is just one of those “thousand little deaths” I have experienced along my path. My world and my worldview was changed overnight when the neurologist told me these four words, “You have Multiple Sclerosis”. It has been in my effort to truly live from that “death” I have had to confront my own fears and ideas about dying.
I entitled this 3-part blog “Euthanasia” really just to capture your attention. I didn’t think you’d read it if I called it something like “Dying With Dignity” or “The Pros and Cons of Suicide”! Let’s face it…none of us want to focus on death, dying, or any other terminal subject. We want to believe like children that we are immortal. But “stuff” happens and usually that “stuff” is when we least expect it.
I don’t know how or when I’ll die. Heck…knowing me, I’ll probably get hit by a bus and killed before I die from any kind of illness! But facing my fears about death and particularly MY death has helped me realize how I choose to live.
I am living with MS, but my Spirit and innate drive for freedom, peace, and joy will not be diminished by this disease. Each relapse, I worry if the disability I am experiencing at the time will be permanent. And each symptom that has become permanent, I have learned to adapt, but not without struggle. In each struggle, I am forced to look beyond the disability and weigh its consequence. And in each consequence, I discover what qualities of my life are most important.
For me, those “qualities” of life are far more important than any quantity. I already know I will not live forever and I have accepted MS will most likely slowly erode many of the qualities of life I cherish. But I still somehow look toward a future with a desire to live as free and peaceably as I can with laughter and joy.
My only hope is when Death comes knocking on my door, I can calmly invite Her in and share a cup of tea like old friends…just like I have done with Life.