By now you’ve surely heard that Medicare is going to pay doctors and other qualified healthcare providers for advance care planning with patients in 2016.
Aren’t you excited?!?
Ok, so if you are not utterly thrilled or even if you are nonplussed about the whole issue, then let me give you a different perspective on why you should rush into your friendly local doctor’s office to make a living will and chat about your future.
Here are 8 unorthodox reasons to create your own advanced care plan in 2016:
1. You don’t want your Aunt Bertha changing your diapers.
Maybe your Aunt Bertha did change your diapers when you were 6 months old, but do you really want her cleaning your feeding tube and wiping up your poop stains when you are 60? I mean heaven forbid that you end up in a chronically dependent or even vegetative state at such a youthful age, but what if…??? Did you even want to be kept alive in such a state at all…??? Certainly something to think about. Maybe you should give Aunt Bertha a call?
2. The loudest person in your family may not have your best interest in mind.
Oftentimes the loudest relative “runs the show” in the hospital- by guilt, intimidation, and a host of other aggressive or passive-aggressive strategies. If you don’t want “you-know-who” making decisions for you or bullying around your other relatives, while you lie helplessly in the hospital bed, then for Pete’s sake, choose and document your own healthcare proxy today! Make sure they know EXACTLY what’s acceptable and not for you.
3. I’ll bet you know who you DON’T want making decisions for you.
Simply put, some people can handle this kind of pressure and some people can’t. The people who would wilt under life and death decisions on your behalf should NOT become decision makers for you, either by intention or default.
4. Hell hath no fury like your family fighting over your fate or your fortune!
I’ve seen feuds break out around a deathbed that would make the Hatfields and the McCoys cringe. I always want to scream, “What the hell are you people doing? Can’t you see that your loved one is dying here?” (Of course that kind of outburst is never good for the physician professionalism scorecard, so I usually manage to translate the sentiment into something a bit more PC.) So, please, please I beg you to have your fate and your fortunes pre-determined before that fateful and inevitable moment arrives!
5. Grudges can come back to bite you.
One time the closest available relative to my unresponsive patient on full life support was his estranged wife. She had carried a grudge for 20 years. When we finally tracked her down to make a decision for my patient, with glee she whispered evilly, “Pull the plug.” (YIKES!) I’m pretty sure that guy would have had someone else in mind to make this decision, but IT WAS TOO LATE! No advance care plan was in place with his doctor. (I sense that you are getting my drift…)
6. No one knows your secret priorities.
During one of my traveling lecture series last year I met a gerontologist who shared some of the idiosyncrasies of his advance care plan with me. He had in writing, that should he become demented and placed in a nursing home: 1) Under no circumstances should he ever be physically or chemically restrained, and 2) He should be allowed to have sex with anyone who is willing to engage him
7. No one knows you like you… and you deserve a fitting exit.
I would like to die on a blanket under the oak tree at bottom of my field. My dad would like to be buried in a bright red racecar motif casket. My husband wants a Viking funeral pyre. I’m sure you have some pretty unique idea about your final goodbye as well… do you have the plan in place?
8. Embracing death will allow you to embrace life.
Is this too much for you? Think it’s too morbid? Let me tell you the great secret… when you embrace death in its inevitability, then each moment of life itself becomes more precious. Now will never come again. Planning for the end-of-life awakens you to the gift of this very moment of life, this very second. What a gift.
“The doctor will see you now…”
To ask is to believe that somewhere there is an answer. ~~ Jonathan H. Sacks, PhD
Fear of dying is an existential experience for everyone. It is a common denominator in the human condition. All of us experience it from time to time. It is further provoked by the dying and loss of the loved one. Watching the dying person raises this fear to a recognizable level. What will I do without my loved one? How will I survive? Am I strong enough to make the change and remain sane? Will I die, too? The fear can take at least several forms: fear of actual physical death, and fear of annihilation of the self (“going crazy”). 1 Just as anger can be frightening, fear can turn into anger and rage. The fear must be managed so that it does not spiral completely out of control – something it threatens to do. Defenses against fear may take many shapes. Among the easiest and most primitive defenses is plain denial: “It won’t happen to me.” 2 As every thinking person knows, internal dialogs – conversations with oneself – are not always rational. “Don’t believe everything you think” is a psychological imperative. That is necessary but far from effortless.
A physician, an anesthesiologist, provides a bold and anguished description of fear. He documented his own feelings when his wife developed breast cancer. His words are poignant, keenly distressed. It is raw fear, the instant wish to deny/repress, the what-if’s, sense of helplessness, questions of self-preservation.
“I opened up the radiology images on the computer, and then I saw it. My wife had breast cancer. At that moment, my world crumbled. I felt trapped. I wanted to run out of the operating room and scream…I wanted it to be a dream, a bad dream. But it wasn’t…I wanted to do something, anything to make things better. But despite my eight years of medical training, and three years of experience in private practice, I could not actively heal my wife. And I felt helpless…I never acknowledged to myself how scared I really was…I repressed all my fears. What might happen if the cancer came back [after successful surgery]? What if it metastasized? How would I raise our girls alone?
I started having trouble sleeping, and I noticed many new physical symptoms – muscle fatigue and weakness, numbness and tingling in my fingers and arms, and palpitations… I became convinced that I had either multiple sclerosis or ALS…
[He eventually found relief by talking about these fears and anxiety in highly focused discussions.] I learned to recognize the symptoms of anxiety, and by simply recognizing its existence, the anxiety no longer controlled me and my [physiological] symptoms subsided.” 3
Talk, introspection, and insight. Those were the healing powers for the caregiver.
This doctor-caregiver’s report is a good reminder of the mind-body connection. Anger is not the only emotion capable of producing alarming physiological symptoms when allowed out of control. Fear can do that, too.
From ancient times to the present day, much has been written about defense mechanisms against fear of dying and death. The writings amount to lessons in self-preservation. Each has his own nuanced ideas and insights. Fear strips away the bearer’s sense of worth and dignity and reduces him to feelings of inferiority, helplessness, and worthlessness. Everyone must find a way to survive in good health. Perhaps he follows the suggestions of others, or he creates his own path, or both. Once again, there is no recipe, no how-to formula, no one-size-fits-all.
The fearful caregiver craves a return to stability, to emotional balance. A new level of equilibrium is sought: adjustment or adaptation. The word “acceptance” could be added here. However, there is no such thing as “acceptance” of death. So don’t worry if you can’t get there from here. The word was poorly chosen. An adjustment may be made to account for death. We may adapt to the concept of a finite lifetime. We may resign ourselves to our fate as humans. However, we do not “accept” the idea of our own death or the death of our loved ones. The idea of acceptance is based on denial. It implies perfect control over, and suppression of, the self-preservation instinct. We have no such perfect control. We do not “accept” death. We do not receive it willingly, favorably, or with approval. Acceptance is then ultimately incapable of relieving death fears. 4
Something emotionally adaptive and stabilizing is gradually achieved. It is a situation in which things once again happen as the caregiver thinks they should, and there are no harmful changes. With effort, it becomes a new reality. That takes time and patience and hard work, grief work. It takes sympathetic support from others, a harmony of feelings, as well as inward focus on calming the anguish and uproar. Of course it can be done. Fear of dying does not go away. It does come back, but under far better control. We do not need to be perfect to be good. Appreciation of life is decidedly heightened by the experience. That is the reward. The controlled comeback is a distinct demonstration of the strength of the bereaved caregiver, his resilience and his ability to grow. Strength and growth.
- One respected professor thinks of it – and teaches it – this way: “A distinction is made between fear of the process of dying, and fear of death itself and what may come when one is dead.”
Shelly Kagan, PhD, Open Yale Courses, Phil 176, Lecture 22: “Fear of Death”: Yale University, 2013. — http://oyc.yale.edu/philosophy/phil-176/lecture-22
However, the fear of death of the self is omitted from this suggested framework. The death of the self is a vital concept in any discussion of death fears.
- “Repression” may be a more appropriate term than “denial.” For a complete, formal definition and explanation of these complicated mechanisms of defense, see:
Anna Freud, The Ego and the Mechanisms of Defense, New York: International Universities Press, Inc., 1946, pp. 45-57.
- Scott Finkelstein, MD, “Being a caregiver has made me a better doctor,” blog: KevinMD.com, 17 May, 2013.
- For notable further discussion, see: Bruno Bettelheim, PhD, Surviving and Other Essays, New York: Alfred A. Knopf, 1979, pp. 5-6.
Dr. Bettelheim was a child psychologist, Holocaust survivor, genocide scholar, and psychoanalyst.
Image credit: www.thescrambler.com — Dale Chihuly’s glass ceiling
Tags: #fear #eol #hpm #GriefWork #resilience #growth
Rea Ginsberg is a retired director of social work services, hospice coordinator, and adjunct professor of clinical social work. She can be reached on LinkedIn and on Twitter @rginsberg2.