The following is a reader’s response to “A Dignified Death? Living Is Dignified, Too,” which appeared in our January 16 issue.
Dear Editor,
“A Dignified Death?” – why should that even be a question? While science has given us medications to combat the symptoms of illness, very often those medications come with serious side effects. In effect – one step forward, two steps backwards. When those side effects bring on fuzzy thinking and difficult behaviors, in ways the individual would never have behaved before, we are causing them to involuntarily step away from the “dignity” they had struggled to maintain all of their lives. Many individuals, who undergo personality swings when on certain drugs, do not feel dignified when they learn of how they behaved. For kind and civil people to learn that they are no longer sweet and endearing can be very difficult to handle.
Every person is an individual, so blanket answers are not enough. Each person must have the freedom to choose how he or she wants to spend his or her later/final years. Some people may not want the tradeoff of taking this “helpful” drug and detesting the person they become. When the patient begins to act in less than appropriate ways, and/or becomes difficult, and the family begins to lose patience and the patient becomes frustrated, when visits become battlefields and everyone feels the tension… perhaps not taking the drug would allow the patient to enjoy his or her remaining time in peace and with his or her dignity intact!
Whatever the patient feels will keep his or her dignity intact must be considered as a viable option and the doctor needs to make all options clear.
Dr. Fryshman made mention of two entirely different protocols and yet they share much in common. Both Palliative Care and Hospice Care were referred to – but not defined.
Understanding the Differences Between Hospice and Palliative Care
Many people confuse hospice and palliative care, thinking they are one and the same. Although they share a similar philosophy, the delivery of care is different. I believe it is necessary to clarify what is being discussed.
Both hospice and palliative care focus on quality of life or “comfort care,” including the active management of pain and other symptoms, as well as the psychological, social and spiritual issues often experienced at the end of life.
Hospice: Dr. Cicely Saunders began her work with the terminally ill in 1948 and eventually went on to create the first modern hospice. She introduced the idea of specialized care for the dying to the United States during a 1963 visit in Yale University. Hospice care is designed to provide comfort and support when a life-limiting illness no longer responds to curative treatment. Initially, hospices were misunderstood and often thought of as death houses. In fact, experience has proven that it is a protocol that they are places that allow a patient to live life in comfort.
In 1969,psychiatrist Dr. Elisabeth Kubler-Ross wrote a book that was based on more than 500 interviews with dying patients. On Death and Dying identifies the five stages through which many terminally ill patients progress. She argues that patients should have a choice and the ability to participate in the decisions that affect their destiny.
Hospice does not mean “giving up,” nor is it a form of euthanasia or physician-assisted suicide. The focus of hospice is on caring, not curing. Hospice utilizes an interdisciplinary team of healthcare professionals and trained volunteers that address 1) symptom control, 2) pain management, 3) emotional support and 4) spiritual support, personalized to the patient’s needs and wishes. As I have been a (Jewish) hospice chaplain for almost 20 years, I can attest to the fact that a spiritual component is never refused and always welcomed.