Throughout recorded history, many have searched for the fountain of youth, and failed. But that hasn’t slowed the effort a bit. And we have made progress: in a relatively short time we have significantly prolonged the limits of human life due to broad improvements in society, safety, hygiene and medicine.
80 million baby boomers can now expect to live an average of 80 years—decades longer than those born a century or more ago. However in the absence of a magical fountain, these years come at a price: our aging is now accompanied by more chronic diseases and more disability than our parents.
Two problems result from prolonging life at the expense of diminished health. First, our ability to function at a level consistent with our plans for aging is impaired, potentially devastating us and our loved ones. Second, our dying, has the potential to become miserable.
As a physician attending the bedside of our sickest patients, I am convinced we have more control over these years and events than most of us have been willing to claim, or that medical providers have been willing to support.
The focus of this section of the blog is the intersection of living and dying. I know by revealing that, some of you might just stop reading right here. But congratulate yourself for getting this far—your willingness even to glance at this page places you in a growing group of people interested in managing their lives right up to the last moment.
It’s difficult to contemplate our own death or a loved one’s, but I hope you’ll stay with me because I am going to arm you with powerful knowledge, the same knowledge we medical professionals rely on when managing our own ends. I am confident that your awareness and mastery of living and dying—whether it’s your own experience or a loved one’s—will benefit as a result.
Before we go on, I want to be clear I will not be discussing euthanasia or any form of suicide. I firmly believe that if our dying patients were treated with the same devotion as our thriving patients, we would not feel the need to kill ourselves or ask others to do it for us.
What follows is the introduction and first chapter from my book, Final Accomplishment: Living Longer, Dying Better. If you desire to read more, additional chapters are available on the “Available Downloads” page. The full manuscript is currently in revision. I will announce here when it is available in its entirety.
Facts of Life
I think I was seven, and my sister five, when my mother said, Now I don’t want you girls to be sad when I die. She was putting clean sheets on the bed, or maybe peeling apples for a pie, or some other equally mundane thing while we jumped on the furniture, or put clothes on the dog.
We paused in our play. I don’t remember being distraught. I do remember being surprised, because dying had never figured into a conversation before, though I’d heard of it. I recall being curious more than anything. My sister and I went to her. Are you sick? We peered at Mom with wondering eyes. You don’t look sick.
No, she said, tucking in the sheet, or the crust, smiling at us. I’ve had a great life, and some day I’m going to die, and you shouldn’t be sad.
My sister and I looked at each other. Okay, we shrugged. Mom, in her thirties at the time, went back to growing older, and we went back to growing up.
Over the next thirty years Mom periodically reminded us of her eventual demise, mostly without drama. (Exception: 1985, when Hurricane Bob threatened our coastal vacation. I was conceived on the water, I’ll die on the water. I’m okay. You guys go without me. Right. We’ll just leave you here while we evacuate. Would you like us to shut off the lights?) Eye-rolling proclamations included, Mom prepared us for her death without being morbid, and ultimately we found her loss easier to bear when the time arrived.
In my mother’s mind, dying was simply a fact of life. Right up there with the birds and bees. (We got that talk early too—one Saturday morning while watching cartoons. My sister then busied herself flipping through cellophane pictures in the encyclopedia, searching for sperm.)
Mom’s matter-of-factness about death might have remained just another attitude she was passing down had I not gone on to study medicine. For while I was effortlessly absorbing her practicality, I had no idea until I became a doctor just how different other families might be.
It is the difference between what we say we want at the end of life (if we think about it at all), and what we get, that has driven me to write. The information and stories I share will help you identify and clarify your personal path.
But let’s begin by considering something far simpler than our differences—how remarkably we are alike. Let me explain by asking a question. How do you want to die?
(A) I don’t
(C) Stuck full of needles and tubes, surrounded by a mix of strangers and loved ones who are hard to tell apart in my lethargic state.
Of course. After lingering longingly over the fairy tale of “A,” we all choose B. But having a peaceful death is not a made-for-TV-movie scene, it is a personal accomplishment. And that’s how I believe we need to begin viewing death—not as the ultimate looming failure, but as our final achievement.
I have seen many, many deaths, some good, some not so good, and some utterly wretched—not because the person’s medical treatment has been inadequate, or because the patient was unloved or uncared for. A miserable death is almost always a consequence of the very best intentions—of a patient, a family or a medical provider—to keep death at bay. But as heartbreaking as dying can be, refusing death a seat at the planning table never improves it.
It does not require advanced education to make our dying better. Anyone can do it. But it does require some knowledge of the principles in play at the end of life, in much the same way that basic knowledge of exercise and nutrition have the potential to improve our living. To have a better death, we must envision it and plan for it, discuss it and visualize it. We must treat it as the important event it is in our lives, even though we do not welcome it. And doing so, contrary to our fears, does not mean we wish to die, and does not hasten death’s arrival.
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I am a physician whose mission it is to help people live as well as possible, for as long as possible. Further, I am a hospitalist: after 20 years in the private practice of family medicine, I now specialize in the care of patients admitted to the hospital.
If you’ve had any interaction with our current health system you are aware that you have to be very ill to get admitted to a hospital these days, so my position puts me in contact with the sickest of the sick. Fortunately, we employ powerful tools that allow us to send most of our patients home. But none of us docs has a magic wand, nor the power to confer immortality, so an awful lot of our very sick patients die. And this is what I have witnessed: we can’t avoid death, but we can tame dying. If we face our mortality we can exert control by identifying the obstacles in our paths to a peaceful course at the end of life, and imagining our futures to write our own scripts. This, not at all incidentally, leads to better living.
There are many choices that can dramatically alter our paths, improving how we exit the planet, and extending and enhancing the time we have. Research confirms what I have observed in more than thirty years of practice: that patients who contemplate death in advance of the event live much better at the end, and die much more comfortably than those who don’t, and perhaps even more importantly, may live longer.
The proliferation of specialists over primary care providers (PCPs) has devolved into a-la-carte health management where inadequately advised patients are offered, and often choose, more and more risky treatments without considering the short or long-term impact on survival, let alone the quality of survival. Without thoughtful input, the powerful tools of aggressive medicine are prescribed without regard to the frailty of the patient. The result can be death by technology: neither peaceful nor pleasant, and possibly premature.
Primary care physicians are more likely to know your history and to spend time explaining what your specialists recommend, but PCP’s are in short supply now and estimated to be in even shorter supply as baby-boomers age. To help bridge this gap I will provide you a window into what dying currently looks like in America, tell you why it’s important for you to think about this now, well before you are dying, and give you the tools to improve the end of your life, however distant that may be.
If you choose, you can become your own advocate for a better end. If you don’t choose, I guarantee someone else will do the choosing for you—probably several someones, some of whom will know you well and will probably mean well, but who may choose poorly, and some of whom will be complete strangers, making choices based on their own paradigms, not yours. It will most certainly remain your personal death—no one else can die for you—but it will not be as you wish it to be, unless you make it so.
Critical to our planning is this: the manner of death as we age and acquire infirmities is, to some extent, predictable. I will show you how to use this information to manage your end instead of defaulting to others with these choices. It is a burden that research shows your loved ones are less equipped to handle than you are.
We cannot wait until we are dying to think about this. Catastrophe is a very busy, and extremely poor, counselor. We do not have the luxury of time or reason when we are seriously ill; indeed we may suddenly no longer have a voice, or a mind. We must spend time and energy thinking about our futures when we are well to preserve our precious strength for survival when in crisis.
This is what I hope to accomplish in this guide.
First we will consider what a good death might entail, and compare how our ideal scenarios contrast with the paths by which we are likely to come to the threshold of death. We will identify the chronic illnesses that afflict us, and study how our medical system responds to end-of-life crises in these illnesses.
The majority of this book thereafter consists of patient stories that exemplify the routes by which most of us will approach death, and the challenges and opportunities these journeys present. I will not spare you details. I will not mince words. The patients in front of me do not “pass.” They die. Finally and irrevocably. Regardless of their or their loved ones’ desires, needs or religious convictions. Regardless of fairness or readiness, youth or wealth or worthiness. They leave us, and our lives will never be the same. I am going to be frank because I want you to be less fearful about the details of dying: our minds have a way of filling gaps in our knowledge with our worst terrors. Reality, while final, is often a lot less frightening than we might imagine.
We will evaluate quick exits and slow, controlled and uncontrolled. Graceful, artful, dignified. Suffering, denying, resisting. Some are chronicles of misery enabled by harnessing the tools of modern medicine even as we avoid dialogue about their worth. A warning then, before you proceed: these are not curiosities—horror scenes for you to rubber-neck at as you pass them; these will be your stories unless you create a different ending. As you read I encourage you to contemplate what you find acceptable and unacceptable for your own care. It is my hope that you will use these accounts as a starting point to communicate your ideas and concerns to your loved ones, no matter your current health.
Each story reflects the experience of a specific patient I have cared for. To protect privacy I have altered identifying markers, except in the stories of my own family. While each story is unique, I have chosen these cases for their universality—they are accurate reflections of the human condition at the end of life.
Throughout, I suggest strategies for interacting more effectively with medical professionals as you ponder this final phase of life. I will teach you to be your own advocate, or your loved one’s, for living well up to the moment of death. In short, by speaking clearly about death I propose to give you the skills to take control of your life in a way that maximizes both length and quality, and preserves your individuality.
Lastly, I make practical suggestions for improving the way society manages end-of-life decisions. We have so many baby-boomers, of which I am one, entering the second half of life that we have a tremendous opportunity to lead the way in adopting an eyes-wide-open attitude to the end of living. We can empower ourselves and our families to consider, communicate and revise our decisions on dying to reflect the individuals we are, and become, over time.
Now, for the first story…
The Final Hole
Our location is not the hospital—that fundamental institute of all things heroic in medicine—with marvels of technology and assistance readily at hand. And I am not in my white coat, nor do I have a stethoscope or any other accouterments that convey knowledge, power, or respectability. I am in shorts and a ball cap, with a ponytail. On a golf course.
Inside and outside the hospital a doctor is always a doctor, but we do not relish the role when we lack our usual tools and staff. One of my mentors told me she would count to ten before she volunteered in public that she was a doctor, hoping fervently in those seconds that someone else would step up for whatever calamity was in progress. One Sunday while she was kneeling in prayer at church, the priest faltered while reading the gospel, and the cleric beside him pleaded, “Is there a doctor in the house?” The physician started her count, but between 4 and 5, she felt a not-too-gentle nudge in her back. “Doctor,” the parishoner demanded, “aren’t you going to help the priest?” My mentor had not factored in the hazard of being known. I also could not count to 10 here on the golf course: my skills, if not exactly known, were at least presumed by others present.
It was a beautiful summer morning, full of promise, the kind you strive to sear in your memory to retrieve at your leisure, at some other time not-so-wonderful, some winter’s day not-so-warm. Friends. Family. A vacation at the beach with its glorious sunrises over the Atlantic, days filled with children chasing tadpoles in tide pools, and adults digging trenches for enormous sandcastles destined to be gone with the next tide. In the evening the breezes would carry off the day’s heat as we sipped umbrella drinks to the sound of laughter and the creak of rocking chairs. We would watch the deepening sky fill with stars and the wondrous Milky Way revolve in the heavens, fooling us into thinking it was turning around ourselves.
But this particular day had not gotten that far yet. A group of us had taken our amateur golfing skills to the course. After my usual mediocre first 17 holes, I’d just hit a magnificent 5-iron onto the eighteenth green to the admiration, I thought, of the gallery standing off to the side of the green—my sister, her husband and in-laws. They had finished their round and were waiting for our foursome to join them for the ride back to the beach house. I laughed at their antics: they were jumping up and down and waving their arms. Well it was good I laughed to my husband as we got back in the cart, but they’re a little over the top. They must have started drinking at the turn.
As we rode toward the green I realized with dawning horror that they weren’t celebrating my shot, but rather screaming, and frantically pointing toward the first tee. As we rounded the shrubs to the first fairway I could see a man slumped over in a golf cart, and a younger man, seated next to him, struggling to keep him from falling to the ground.
First moment: distress; this is an all-too-real disaster. Second moment: sympathy; a visceral connection to these strangers. But what I have to do is something entirely different. Third moment: disengagement. Emotion is the first casualty when a doctor encounters a crisis.
In the next few seconds these things happen: I swear every curse word I know to myself—this is exactly the time you do not want to be a doctor; I muster my code knowledge (the emergency procedures medical personnel use for sudden death), then adjust it to code-in-the-field knowledge, a much dicier proposition than a code in the hospital. I jump out of the cart and start ordering people around: this I do very well. And people listen, because one of the simple truths of life is that in an emergency we appreciate someone willing, and presumably able (their very willingness seems to imply competence, rightly or wrongly) to take charge. I fervently and futilely wish it didn’t have to be me.
Call 911, I command. No cell phones yet, and no defibrillators on site. Someone with two able legs, and very relieved to be leaving the scene, is dispatched to the clubhouse. I tell the frantic alive-man who acquires a name and identifies himself as the slumped-man’s son, that I am a doctor as I thrust my fingers into his father’s neck searching for the carotid artery. No pulse. Quickly, firmly, calmly I continue: get him to the ground.
But he’s breathing, the son offers.
No he’s not. His respiration is agonal: the irregular groaning gasp, ineffective-for-oxygenation that indicates a life-threatening event.
Who knows CPR? My sister and her husband. Thank God. I won’t have to do this myself.
What happened? We just teed off and he got back in the cart and fell over.
I start resuscitation. Airway: clear. Breathing: none. Pulse: none. One of you start breathing. I’ll start compressions.
Heart problems? I ask as I pump. No, says his son.
Did he complain of chest pain? No.
Shortness of breath? No.
He just slumped over. He’s healthy as a horse, says the son, who appears to be in his thirties. I tell him to sit down; I can’t have anyone else to take care of.
Now I told you I didn’t want to be a doctor in that moment, but there is one perk in this situation, nevertheless. If you are the only one capable of being in charge at the scene, which necessarily involves being able to give the orders, you don’t relinquish your voice or your command by doing mouth-to-mouth, saliva-to -saliva rescue, the nastiest part of resuscitation that no one anywhere, not even Mother Teresa, may she rest in peace, wants to do without the plastic barrier of a breathing device called an ambu-bag. And of course—we’re on a golf course—the only bags out here hold our clubs. So my poor sister and her husband trade-off doing mouth-to-mouth, 2 breaths for every 30 compressions, while I check the pulse, monitor skin color and furiously try to think if there’s anything else to do.
The chest compression part is hard work. Advanced Cardiac Life Support guidelines advise a goal rate of one hundred compressions per minute to achieve meaningful circulation of blood—which is ridiculously fast. Just try tapping your finger on the table while you time yourself—nine taps every five seconds—now imagine doing this with the heels of both hands, one placed over the other for added force, and having to push the breast bone down 2 inches into the chest cavity and allowing the chest wall to fully recoil after each compression. If you are doing CPR correctly, the first few compressions will break the ribs in an aging person’s chest with a nauseating crunch that everyone who has ever done CPR has felt, and most people in the vicinity of the event can actually hear. This degree of effort—intense enough to compress the heart from outside the body in a manner strong enough to circulate blood –- is very quickly exhausting. We take turns.
What happens next could be predicted by all those with experience: it is an expected consequence of any code conducted without an endotracheal tube to inflate the lungs, and often occurs even in the hospital before we have time to get the tube inserted. Because there is no natural valve over the food tube, when you blow air into the lungs during CPR you blow air into the stomach at the same time and with the same force that you are using to ventilate the patient. The stomach will only hold so much air, and when it is maxed out, it sends it back, accompanied by any partially digested food that happens to be there. Further, people have a way of having heart attacks right after a nice meal, due to shunting of blood from the heart to the stomach for digestion, which may tip an oxygen-starved heart over the edge into a heart attack.
Thus, our patient vomits.
Which causes the unfortunate resuscitators, and nearly everyone else present, to do the nearly the same thing. Before we can turn his head and sweep his mouth of the debris, the patient’s chest heaves again with one of his ragged agonal breaths and he aspirates (inhales) some of his stomach contents into his already stressed lungs. If he does recover, this will mean pneumonia on top of whatever else caused his collapse. There is nothing my sister or her husband could do in their lives that will ever earn more of my respect than what they did in continuing to breathe for this stranger on that hot July day.
Once the 30-compressions-to-every-2-breath rhythm is established I take a moment to reassess the scene for details. We elevate the patient’s legs, putting bags of golf clubs under them to keep his blood pressure up. We are busy, but calm. Everyone accepts the role he or she is playing. I look at my patient’s son whose name I have already forgotten as an unintended consequence of needing to keep my head clear of non-critical information. He appears understandably stricken, yet he is holding himself together despite the extraordinary circumstances, for which I am thankful. It’s hard enough to code a patient without having to keep the bystanders from becoming unglued. I see in his eyes that the indignity of the whole thing has not escaped him: his father’s false teeth are cast aside in the dirt, his shirt has been ripped open and his pants loosened and pulled down for me to periodically feel for a femoral pulse to see if he’s regained cardiac function. Dad is exposed. Strewn with saliva and vomitus. His lips puff passively up and down over his sunken gums with the force of our compressions.
***** ***** *****
Comparatively speaking, we can relax a bit now: the foundations of in-the-field rescue are in place and our job is simply to keep this up until the squad gets here. So step back with me for a moment and let’s analyze what’s happening. This is called a witnessed arrest—the patient was observed as “fine” one instant, and the next, slumped over. As dismal as the code data is I’ll tell you about later, this is still far better than an unwitnessed arrest—coming across a person already “down”, when you have no idea how long that person has been there. We started excellent quality CPR on this gentleman within 2 minutes of his coding which is as good as it gets, even in a hospital. Once I’ve established from his son that there was no warning for this event, and from my exam that our patient has no pulse, there are really no good potential causes of this scenario, and the likelihood of surviving an episode like this inside a hospital, let alone outside, is small. One moment this man is seated in a golf cart looking forward to a round of golf with his son, and the next moment, he is gone. No words, no exclamations, no thrashing of limbs or gnashing of teeth. No pain. No awareness. Quick. Neat.
As we work on him I consider the very short list of things that will take a person down this suddenly. My patient looks to be over 70, so heart attack would statistically be the most likely, caused either from a cholesterol plaque suddenly cleaving from its safe mooring upstream and completely damming the main coronary artery, which stops all blood and oxygen flow to the heart; or from an arrhythmia that sets the heart to a fatal quivering we call ventricular fibrillation (v-fib). Also possible is a massive stroke (in the brain), which could either be due to bleeding or to clotting, each of which is capable of shutting down the brain’s control of every major body system, a condition incompatible with life. Another suspect is a saddle pulmonary embolus—a giant clot that breaks off a major vein in the leg, groin or abdomen, travels easily and silently through the heart, and pulses through the pulmonary artery where it immediately snags at the major fork into each lung—the saddle—blocking all blood flow to the lungs and therefore all oxygenation and blood flow to the rest of the body. Kablooey. Nothing I can do for you in the ICU at the finest medical center in the country, let alone on a grassy knoll that is the first tee at Peaceful Shores Golf and Tennis Club, in Beautiful Beach, Carolina.
While CPR conducted emergently on the first tee looks and feels quite heroic to the others present, I am, so far, the only one who knows we will not likely be able to save Dad. We persevere.
The squad takes absolutely forever to get to the course, forever in this case being 22 minutes. The three of us valiantly keep up CPR the entire time, apparently effectively as evidenced by the fact that our patient still has a heart rhythm (v-fib, the quivering heart described above) when the squad arrives, though his color is deepening to a dusky blue by that time, a sign that our efforts were not overcoming one of those underlying fatal problems I mentioned. The medics shock him to no avail, and call the ER to inform them of imminent transport.
The ambulance doors are shutting before I realize I’m running out of time to speak to the son. I want to prepare him for what I am sure is to come. He is turning toward the parking lot when I place my hand on his shoulder to make eye contact.
If there was a chance to survive this, your father had it. He nods, hurriedly shakes my hand, and trails more thank-yous as he runs off to follow the ambulance, screaming now on its way to the hospital. I want to tell him there’s no need to hurry—this has been out of our hands for some time. Be careful I say.
I called the hospital later and confirmed that Dad died. This is not prying (though the absurdity of current HIPAA regulations would make the information much more difficult to obtain now). I need to know if my assessment was accurate: this feedback is as much a part of my education as the journals I read and the conferences I attend. Individual outcomes informed by medical research shape our clinical acumen. I feel a variety of emotions at the news: sadness for the son’s grief, satisfaction in the job we were able to do on the spot, relief that the squad took him off our hands, and humility about my position in the universe. One thing I do not feel is surprise.
Perhaps you find yourself reflecting on the events of this man’s death and thinking it was a pretty good way to go—quickly, painlessly, doing something he loved with someone he loved on a spectacularly beautiful day. On the other hand maybe you find it dreadful—undignified, half undressed on the grass, the trauma of his son witnessing the whole thing. If you’re under the age of 30 you probably think my patient in his 70’s was pretty old. If you’re on Medicare you’re thinking, damn, that’s too young! Whatever perspective you have, I will tell you you’re not very likely to die as Golf Dad did, regardless of your interest in the game.
Let’s see why.
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Expected postings weekly through February 2018, or until completed:
Additional chapters and links to advance directives, when posted, will be available through a tab on the left “Available Downloads” or by clicking on this link: http://drmjisin.com/?page_id=388