I had a call yesterday from the spouse of one of my recent patients letting me know that he had died following complications from Covid and pneumonia. He also had a diagnosis of Parkinson’s disease which is how I had come to know him. Over the time of knowing him, I became very fond of him and his wife, and I was touched that she thought to contact me and notify me of his passing. Just a few days before, I had spent several hours at the hospital with another patient and his wife. He too has a Parkinson’s diagnosis, and since being diagnosed 17 years ago, the last two years have been especially difficult for him and his wife due to repeated hospitalizations and decline in his overall function. His wife is now thinking about bringing him home with Hospice, a decision that can sometimes be met by family or friends with anger if they interpret the decision as “giving up” or hastening death.
While not all of us will be lucky enough in our lifetime to have the first-hand experience of bringing new life into the world, we will all, like it or not, have the experience of death. Our own, and those we have loved in this lifetime. The notion of having a “good death,” may be a foreign concept to many people, especially in our culture when decline from illness and even natural aging are taken on with a vengeance as we “fight” aging and disease. It’s no wonder that when one decides to elect Hospice for themselves or a loved one, it may be viewed by some as “giving up,” when in reality it may be an important gestation period preparing for death. A decision to request Hospice can provide support and help to family members and be an opportunity for an individual to live the remaining time of their life in whatever way feels meaningful along with some re-assurance that they will be helped to transition out of their physical bodies with as little pain or other discomfort as possible.
Prior to being eligible for Hospice, some patients may elect to have Palliative care. Unlike Hospice, which is usually recommended when it is anticipated that an individual may have 6 months or less to live, palliative care can be offered at any point in the course of a chronic or progressive disease diagnosis and is a form of medical treatment that manages the pain, symptoms, and side effects of chronic illness. But misconceptions and negative public perception surrounding hospice and palliative care can often present a tremendous roadblock in delivering the right level of care at the right time.
When I learn that a former or current patient has died, I am often taken by surprise, because it seems to happen quickly. Some illness, fall, or other event sends them to the hospital and a week or two later I hear they are in Hospice. But perhaps, their health has been failing for quite some time, and their own physicians never discussed options that might have been available to them at some course in their disease progression.
Hospice and palliative care are not about waiting to die. Rather, about extending and making the most of your time and if patients, families, and healthcare professionals understand this difference, quality of life in many instances can improve.
Life after death is a mystery for sure and the idea of a “good death” may seem a ridiculous notion to some people, because there is rarely the death of someone we love without heartache and loss. Our individual ideas about dying are tied to our values, cultural and religious beliefs and no doubt are different for all of us, but as we age with or without a chronic disease diagnosis, our thoughts sooner or later will turn to death as we lose friends and other loved ones, and our own mortality is brought into closer view.
“Tuesdays with Morrie” is about a man learning the final lessons of life from his dying professor, Morrie. As they are discussing death, the narrator asks Morrie “How can you ever be prepared to die?”
Morie replies, “Do what the Buddhist do. Every day, have a little bird on your shoulder that asks ‘Is today the day? Am I ready? Am I doing all I need to do? Am I the person I want to be?… Is today the day I die?… The truth is, Mitch, once you learn how to die, you learn how to live.”
When a patient of mine, Joe, died last year, his wife shared a statement that he had included with his Living Will: “serve prime rib at my funeral.” Joe always made us laugh in our weekly speech group, and his gift to us after his death, was to share his humor one last time.
My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower. Mary Spremulli, MA, CCC-SLP * FiTOUR® Group Exercise Instructor * Certified End of Life Specialist (CEOLS) * Voice Aerobics® A Whole Body Approach to Voice Practice
Voice Aerobics the heART and Science of Voice Practice