The ‘When’, ‘How’ and “Of What Cause” We Will Die
In our GrandParent’s day the answers to these questions were: ‘imminently’, ‘often painfully and quickly’, and more often than not, ‘accident, infectious disease or childbirth’. Today we can look at a chart derived from cumulative data and get a pretty good estimate of the ‘when’ we will die, minus the exact date and time. The “how’ is often ‘slowly over years and finally sedated’. Our Centers For Disease Control works hard to keep tabs on the causes of our deaths and the data say that more than half of all adults in the U.S. are dying from the effects of a chronic illness (cdc.gov 2014). Other interpretations report 7 out of 10 deaths are from the effects of chronic illness.
That leaves thirty percent who will die from accidents, infections, mortal first heart attacks or strokes, and/or an acute episode – within a year or so – after a diagnosis of a more rapidly progressing condition.
In our GrandParent’s day (1918 – 1920) 75 million people, world-wide, died from the flu. It was a contributing factor in ending WWI. The dying of those 75 million was relatively quick; often a matter of days from start to finish. Back then, our diagnostic tools were primitive. A heart attack came quickly and with finality. Although angina pain or arrhythmias were likely precursors to The Big One, few would ever develop heart failure because heart failure is a late stage phenomenon of the disease and, there was no treatment for the early stage. These days we have the medical & technical means to survive a first heart attack and go on to live within a heart diseased body for many years.
During those years we will experience everything we wouldn’t have had we not survived the intended, as well as the un-intended consequences of survival. Every day, of every year, we will treat the signs and symptoms of the chronic illness, attempting to prevent a recurrence. But there will be recurrences, relapses, and exacerbations. We’ll notice every flutter and gas pain and wonder if this is, or is not, The Big One. But we never think of ourselves as dying quite yet. There have been no referrals to hospice so I must not be dying yet.
But They Only Taught Me How To Stay Alive, Not How To Die
That’s the missing piece and the jist of my complaints against our medical model culture. This is not the same as being anti-medical care. No, the medical care now available is a Wonder of the Modern World, unprecedented and continuously evolving. Modern Medicine has something for everyone. In the
process, we have feasted from its offerings and, perhaps naïvely, let it insidiously insinuate itself into every part of our lives. What motivates us? Fear, Vanity, Privilege, Entitlement, Availability, the Relief of Suffering? “Let Fear Guide…” as a glimpse at how it works.
I’m a user of the system. And the motivations are several. When I chose to have the basal cell and squamous cell carcinomas removed from my chin and nose my motivations were vanity, availability of service, and privilege to pay a mere $50.00 co-pay. The calculated risks of the cancers spreading were between 3% and 7%. Part of the research was to investigate the risks beyond those of recurrence and/or metastasis. What would happen if I did nothing? Perhaps I would have to wear a bag over my head to avoid scaring dogs and little children. So, I now have a smoother and one less wrinkle chin instead of a chronic open wound. The nose has a scar extending from the edge of one nostril, around it and up the crest. The tip is numb. For me, the risk was worth the benefit. The financial cost is shared by all of us. Thank you.
More than I practiced envisioning the possible evolution of my face sans surgery, I practice envisioning what dying might feel like, always allowing a wide berth for the unanticipated. Imagine feeling the body shutting down. Insufficient Oxygen and/or circulating blood. A precipitous change in blood chemistry, too little or too much sugar. What does it feel like? At some point we lose consciousness and our bodies stop breathing. It’s all peaceful.
Now imagine being pummeled, pounded, and infused. Heart, lungs, and kidneys being forced back to dealing with oxygen, blood, and waste products. We once were dead, or very nearly there, and now we’re back to life. Stories survivors tell are often rich with appreciation. Many admit to living ‘on borrowed time’. The minority report their lives changed after seeing The Bright Light or, even more.
We rarely hear anyone tell “I was almost through the dying and now I have to do it all over again.” How’s that for a prognosis?
We’ve become addicted to the offerings of medicine no less than one may become addicted to the offerings of the drug dealer down the road. The most successful dealers of illegal drugs don’t partake of their own wares. And doctors don’t die the way the rest of us do. ‘How Doctors Die“.
“A Stanford University study shows almost 90 percent of doctors would forgo resuscitation and aggressive treatment if facing a terminal illness.” (from “How Doctors Die”)
And a defense suggested as to why doctors don’t share this with their patients:
“We’re trained to prolong life,” he says.
Goldman is a palliative care specialist at Providence Saint Joseph’s Medical Center in Burbank, Calif., and he says that having the tough talk may feel like a doctor is letting a family down. “I think it’s sometimes easier to give hope than to give reality,” Goldman says.
It’s Not Hope, It’s A False Sense Of Security
Acute Care Hospital nursing was exciting. People were opened up, sewed up, and sent on their way. I believed they were patched as good as new until I starting recognizing the frequent fliers. As a visiting nurse I began seeing these same, and similar, patients in their homes. They were still getting better, I believed. There were no second thoughts when I agreed to assume the case load of Long Term Care patients until, after 2 weeks, I realized that they were not getting better. What am I supposed to do? “Keep them out of the hospital” our Director of Patient Services replied. It was then that I began to learn about and practice teaching people how they may die at home. The intention was neither to prolong life nor to hasten the dying process. All medical and/or surgical intervention remained available but the option was rarely chosen.
“What is your understanding of your medical condition?” and “What do you see happening when your health declines?” “What do you hope for?” “What are you willing to pay and what are you not?” were questions asked early and often during the course of our relationship. Patients talked about the things ailing them, health-wise and other. We discussed the circumstances under which they were admitted to the hospital and about how we could avoid another trip. We explored “How will I know I’m really dying?” We inventoried medications: what they were prescribed to do, side-effects, and the ramifications of not taking them. We studied and practiced, learning how to anticipate and get through distress with and without medical intervention. It can be done. The hardest part is dealing with physicians’ aggressive insistence on doing it ‘their’ way.
To say that Alice despised seeing doctors is no exaggeration. Her right leg was amputated 6 yrs. earlier, and she was given 18 different meds to manage her diabetes and her heart whose beat was truly unique. Did she follow the physician prescribed protocol? Not a chance. She was tired of the whole rigamarole. We’d been working together for two years when I got the call that Alice was being discharged from the hospital wearing the hospital gown and new Pacemaker under the skin of her left clavicle. What happened Alice? “I don’t know. Things went kerfluey and the next thing I know I have this thing. I’m not going back there again.” She never did. She never even made it to her pre-scheduled, 2-week check-up for the Pacemaker. Probably with numbness around her lips and spreading, pain in her left hand, and a heavy weight in her chest, Alice went to sleep in her chair and went on her way, finally.
For a more light-hearted yet just as serious a presentation, take a trip to ZDogg.MD (Zubin Dumania, M.D.) self proclaimed ‘off-white rapper”. Humor, lots of rap: website, Facebook Page, and Interview. Especially his video re-mix of “Ain’t No Way To Die’ (Eminem/Rihanna).
Chronic Illness, Palliative Care, Hospice
Definition #1 – Ongoing, generally incurable illness or condition; ex. heart disease, COPD, diabetes, cancer, HIV, high blood pressure (hypertension), kidney disease.
Definition #2 – Treatment of the discomfort, symptoms, and stress of serious illness whose course cannot be changed. It provides relief from distressing symptoms including: pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, problems with sleep. It can also help you deal with the side effects of the medical treatments you’re receiving (those listed plus a lot more).
Definition #3 – Care at the end of life, always includes palliative care. But you may receive palliative care at any stage of an illness. The goal is to make you comfortable and improve your quality of life.
In other words, all those of us taking medicines or treatments for a chronic illness are on palliative care. With rare exceptions, there are no cures, only progress. We have begun our dying. Welcome to the Club.
“With chronic diseases you often experience episodes of being really sick (exacerbations); but, in between them, you get along rather well. During any of the really sick times, you could be sick enough to die. But, if you survive several of these episodes, then you hardly know when you are really going to die. Is dying going to be just the end of those really sick times? Will it be something altogether different? If you die during one of the otherwise ‘well’ times, your loved ones may feel as if you died ‘suddenly’, even though you have been ‘living with’ your disease for a long time.”
Handbook for Mortals, by Joanne Lynn, M.D. and Joan Harrold, M.D.
Let The Buyer Beware, Study and Practice
It’s never too soon to become familiar with Dying so we may become aware of our proximity to Death. When confronted with chronic illness learn about it. By no means let it be your only resource but I do suggest www.PatientsLikeMe.com. It’s been developing for several years and has a great ‘back story’. I’m most pleased at how it has turned into a genuine patient database and forum about living with innumerable illnesses. Filled with patient reports on treatments prescribed, incidence of side effects experienced, coping, etc. A good picture of what one might anticipate.
Search for those with experience and wisdom in preparing for our dying. Learn about and practice getting through disagreeable symptoms and feelings. Pay attention. Watch them come and go. Remind yourself that no one has ever died of pain, really. Find out how to get through feelings of ‘air hunger’ so it may be managed and not distracting during your transit, just in case you’ve decided you prefer to die only once.
It’s nice to know that we have choices.
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