It may surprise you but the hardest choices in medicine are not about pressing diagnoses and what to do about them, but what to do when medical care is no longer helpful. Because something can be done medically does not mean it should be done, because it may not be in the patient’s best interest.
Dying is not an emergency, at least not always. Yes, when your heart stops or you are in a crash, be grateful for the skilled attention of paramedics, emergency room staff and trauma team.
Mostly though, death and dying come more slowly.
Twenty years ago, Marilyn Webb wrote a book called “The Good Death: The New American Search to Reshape the End of Life.” Her theme was that we have an uneasy relationship with death and dying and need to figure how to do it better.
Flash forward and we have Katy Butler’s “Knocking on Heaven’s Door, The Path to a Better Way of Death” and her more recent book, “The Art of Dying Well.” Butler’s personal story is about the suffering and painful decisions she and her mother had to make after her father, a brilliant and successful academic professor suffered a major stroke. He became demented, incontinent, unable to communicate or even feed himself. She tells how difficult it was to get doctors to shut off his pacemaker which was keeping him alive, but not really.
The tense dynamic is between saving life or prolonging death by our medical technology and care process. When a loved one is in a terminal state, knowing when enough is enough and how to tell your family member’s doctor not to proceed with the next procedure, drug, surgery or other medical treatment … these are tough choices.
Most older people express a strong desire to die at home in the comforting setting of their family and familiar surroundings. Unfortunately, the majority of people in the United States now die in a hospital or nursing home, which used to be the final resorts for only the impoverished and destitute. Their lives were prolonged by our skillful medical art. A quarter of the $610 billion Medicare budget is spent on people in the last year of life. Is that a good choice?
Preparing and executing a living will, advanced directive and medical power of attorney, timing of palliative and hospice care are all essential parts of this process. Still, we cannot anticipate all potential outcomes. Sometimes there are incredible demands for family to provide for around-the-clock care, as well as financial, emotional and caretaker health problems. Family members step up in these situations, usually trading off work and home obligations to do so.
Other family dynamics of duty, guilt, and long-term unresolved issues come to a nexus in end-of-life or prolonged dying situations. We may face the inner conflict of hoping a loved one passes soon and comfortably while they meander through a long period of incapacity.
The more we are informed and aware in advance of emotional, social, spiritual, and medical challenges around the dying process, the better we can ensure our loved ones have a good death. Reading these books is a good start and be sure to discuss end-of-life options with your doctor.