A primary care physician,–or generalist by whatever name–can best prepare and accompany a patient in that transcendental experience that is dying and death.
Family Medicine physicians, in particular, are ipso facto, concerned with the health of Family. Therefore, provided the patient agrees, the physician should encourage the participation of family and friends whenever possible; the life-long advantage of Being There for death is highly significant for both survivors and physician.
The doctor personally attending a dying patient was routine, 100 years ago. Perhaps that was in part because nothing else could be done; remember the Luke Fildes painting of a doctor sitting resignedly at the bed of a patient?
While it may be overly dramatic, the details stand a closer look: The physician’s demeanor; the neglected cup and potion; the disarray; the child’s parents; the darkened humble room. This doc is not attending nobility, but a family that lives at the edge of life. The doctor can do little except Be There. Isn’t that precisely the nature of death, that physicians can offer nothing except comfort, advice and –- most important under the circumstances–our presence?
We seem to have forgotten–or become fearful of– just being there for family and friends of the dying patient. Maybe we are afraid of being found out to be just… human; to have failed in our pretentions of scientific omnipotence. Because omnipotence implies guilt and deception when it becomes impotent. Yet the nature of life’s end is too critical a moment for a physician to give over exclusively to well meaning hospice teams, hospitals, nursing homes, or institutional types.
Clearly, Being There for death is quintessential to medicine. It completes the circle of a life, and defines what is human, and what a physician. Why should we abandon our patients and families in their extremis? No one, I believe, can better be there at that time than the physician, if well known to the patient.
In my own experience Being There is eminently doable, even though that was decades ago, in Woodland, when house calls were still common. The practice included something that could be called Home Rounds: regular visits, usually one afternoon each month to those who had difficulty getting to the office due to the limitations of chronic illness. The best features of those home calls were interpersonal, quiet, unspectacular, shared humanity. The visits quite naturally led, occasionally, to the time when death visited as well– as expected. The downside of those home visits was that better diagnostic and treatment options were not in hand. Yet present day micro-technology can largely minimize that problem; how contradictory that as it becomes ever more reasonable, available, effective, and mobile, its use outside institutions seems more limited.
There is no serious barrier to home visits, or to Being There today, even during the current medical perfect storm. (see below) Medicare regulations have been modified to allow primary care physicians to discuss end of life decisions as part of a health assessment. It seems clear the same sort of hocus-pocus will be made available by ACA administrators for younger people. (see below.)
However, the physician who hopes to Be There might best think about the process and plan for it –as we do with any other aspect of medicine. Perhaps the easiest part is already at hand; the material that is available from, for example, CMA, referenced here without further comment:
1) Advance Directives: see, for example:
2) POLST. Be able to discuss Physician Orders for Life Sustaining Treatment https://www.cmanet.org/about/patient-resources/end-of-life-issues/physician-
The topic of dying is almost impossible to introduce quickly or easily. Most of the books on the subject are rather tedious or dense. I therefore suggest the physician go through exercise of making up a simple, easily understood one or two page letter to communicate with patients. I have done so, for people themselves to use, but it can be modified for use by a physician. It is found below in a version for use by patients, but should be updated because things change; it can easily be revised by a physician or others to introduce the subject in discussion. a version is viewable on line at https://nwalmanac.wordpress.com/.
Thoughts on Death and Dying
When it becomes impossible to avoid death and dying, you may want to consider whom you want to Be There, even though no one is able to provide more than comfort. To make that possible, consider setting down information that can make clear your preferences. The purpose is not to replace the physician, pastor, other counselor, or hospice; but to assist them, and you, and your loved ones in this universal life experience that is at least as significant as any other, including birth.
Review your personal belief about death
Consider experiences that seem death-like:
The condition we were in before birth;
Deep Sleep, Dream, Amnesia of drugs.
Consider what you expect your own death will be like:
1) Will your death be permanent or temporary?
The beginning of life everlasting? Yes_____ No_____
A temporary condition before rebirth? Yes_____ No_____
A permanent state of rest, nothingness? Yes_____ No_____
2) Will you be aware or even conscious? Yes_____ No_____
3) Will you- can you- feel pain after death? Yes_____ No_____
4) Will you be rewarded or punished for your life? Yes_____ No_____
5) Do you want religious guidance to die? Yes_____ No_____
If so, who will be with you?_________________________________________
6) Will friends or family to be with you when you are dying? Yes_____ No_____
If so, who will contact them?
7) Do you have an Advanced Directive? See, for example:
8) Consider POLST, Physician Orders for Life Sustaining Treatment so you can better say what to do when or if you can no longer make decisions: see
—You may want to take this completed form to your physician, friend, pastor or family. The physician can most readily provide comfort care personally.
—Speak up if your ideas change. That can happen!
—If you want your doctor to be with you when you die, ask that a copy be
placed –or scanned– into your record. Keep the original.
There is much written on the subject of death and dying. However it is often too detailed, tedious or theoretical to be practical. That is why you, yourself, are the best person to determine your ideas on death and dying. You may think about practicing detachment from the things of your life. The short list below is inspired by Chapter 3 of The Tibetan Book of the Dead by Robert Thurman 1944 Bantam.
1) Begin giving things away. Especially things you care about. Give thoughtfully, carefully.
2) Review your relationships, concentrating on what may make your relations and friends.
3) Let go of your own body concerns; take care of it but be relaxed about it.
4) Meditate; when you do, or when you write, you can better find your inner self.
‘President Obama had wanted end-of-life counseling to stand as a separate, billable service, giving families and doctors a clear route to make decisions about when to forgo treatment. The idea was scrapped because of concern the benefit might pressure families and incentivize doctors to pull the plug.
But there is language in the final law that moves the discussion forward a bit. The Affordable Care Act’s Medicare regulation says “voluntary advance care planning” can be included in covered annual wellness appointments. The planning would involve creating an advance directive, a legal document that dictates how aggressively a patient can be treated once he or she loses the ability to make decisions.’
The Melba Notebooks, (partially based on material in this blog,) has been published. Anyone who has been close to elderly parents or friends who are in their last years will find these scenes moving; anyone who is living that life experience now will find the Notebooks to be familiar territory, or perhaps, instructive.
Publication Date: February 5, 2014
Bob and Melba marry at the dawn of the Great Depression. A mining engineer, Bob finds work outside the US and is later blacklisted by mining companies after supporting a gold miners’ strike in the Philippines. For several years thereafter he can only find work as an underground miner himself. Melba, Bob and their children make a life, often from scratch, in mining towns around the world, including Quebec, Ontario, the Philippines, Mexico, and the Western USA.
They grow old and frail. Having lived on their own terms, they want to die on their own terms too—at home, away from institutional protocols that tend to sanitize, trivialize, and prolong old age and death. They do so with the help of their children and caregivers. Their story was culled from five hand written spiral bound notebooks that make up a five-year conversation among caregivers about Elder care and terminal care told with clarity, sympathy, humor, and power. The print edition is available at Amazon, and CreateSpace. The e.book is at Kindle Direct Publishing.
This entry was posted in creative non fiction, Essays on América 3, Medical essays, philosophical essays, The Melba Notebooks and tagged Caregivers to the elderly, Dying at home, elder care, Family, Hospice, medical care in old age, Mining towns and families, Prostate Cancer.