I stopped breathing last Thursday…
A great essay in today’s copy of The New Yorker titled Letting Go: What Should Medicine Do When It Can’t Save your Life by Atul Gawande (noted surgeon and journalist who wrote Complications) highlights the state of modern medicine and the delicate balance between staving off death through aggressive interventions and improving the state of living of the days left for a terminal patient. This conundrum is one to note, especially as it relates to the growing interest in health-care costs and spending. I feel that it is a difficult subject, as the rising cost of health care is attributed in large part to the terminally ill. Gawande mentions the fact in his essay: “Twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life, and most of that money goes for care in their last couple of months which is of little apparent benefit.”
Gawande is correct in pointing out that this national awareness about the topic centers on the unfortunate question of which side should “win” in addressing these expensive decisions. Is it the insurers and the taxpayers undertaking the bill, or the patient fighting for his or her life?
In conversing with numerous individuals my age, the topic is often simply brushed off. Obviously, the I.C.U in hospitals includes patients comprised of a more geriatric makeup. It’s more of a representation of life. It is safe to assume that as we all age, it is expected that we’ll start to break down and our organs will fail. Even with modern breakthroughs and ubiquitous phrases such as “age-defying/anti-aging” or “rejuvenation” or “forever young,” the mortality rate for all of us, as much as we choose to accept it or not, is 100%. We all die. I don’t mean to be pessimistic. On the contrary, I feel that I believe in the merits behind living out the actual days of our lives; a quality over quantity of sorts. Now you try to say this to someone confined to their deathbed, and the viewpoint changes. One that I can boldly and fortunately (yes, fortunately) say that I have felt. Gawande goes on to say:
Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.”
People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.
I stopped breathing last Thursday. It was supposed to be a routine surgical procedure, albeit one that would require general anesthesia. I was to have my portacath removed from my chest after 5 long years of using it, dating back to my last start of chemotherapy. In my usual stoic fashion, I let my parents and my pastor know that i’d be undergoing this procedure, and assured them that it was a quick and easy procedure. As I drifted off into sedation on the surgical table, I found comfort in at least being surrounded by numerous individuals, albeit in the form of a medical team consisting of surgeons and anesthesiologists. There really is something about drifting off, surrounded by other human beings, that is actually comforting.
On a quick side note, I found some sort of comfort in the Baltimore Sun story about the Johns Hopkins Research student who was stabbed to death last week, in that at least the dying young man did not have to be alone.
A Charles Village resident, who would not give his name, said he witnessed the attack and ran outside to comfort the victim. “I made it back and held his hand, and I told him that everything was going to be OK,” the man said. He said, ‘Help me,’ and then I held his hand until he expired. I didn’t want him to be alone. Nobody wants to die alone.“
A little while into my surgical procedure, as the anesthesia was setting in, something rare occurred. Something so rare that the Hopkins anesthesiologists decided to do a special case study on it since you see it once in a lifetime, even though you read about it in medical textbooks and lectures. As I reacted to the anesthesia, I stopped breathing. In the medical world, they call this rare, life-threatening condition Malignant Hyperthermia. ((This condition is not the same as hyperthermia that is due to medical emergencies such as heat stroke.)) In terms of incidence, the occurrence of MH has been estimated to be as rare as one in 65,000 administrations of general anesthesia. Luckily the medical staff reacted quickly to the situation and were able to get more help brought into the surgical room to help pry my jaw open(which had shut tightly due to the muscular rigidity) and put a breathing tube in to resume my breathing.
The fall-out is where I really want to address this topic of my entry. I ended up in the I.C.U (Intensive Care Unit) for 24+ hours and during that time, while I felt completely fine, they had me confined to a hospital bed with all sorts of tubes and lines and wires for the rigorous testing that followed. During this time, I came to a point where I went absolutely nuts and wanted to rip everything off and run out of the ward. Now, I’m not exactly a stranger to the coffin-like state of being confined to a hospital bed for long periods of time. (During my first diagnosis as a pediatric oncology patient at age 17, I spent four months inpatient confined to a hospital bed and again spent a little over two months when I relapsed at age 22.) So naturally, as I sat in that bed last week for hours, I was able to think about various “what ifs” and came to think about this so called “new difficulty for mankind” of how to die.
In the I.C.U unit, dubbed by a critical care physician as a “warehouse for the dying,” I was surrounded by all sorts of end-stage individuals. Even on the medical rounds that the medical interns were led on, I was the only patient that was up and coherent. This principle of uncertainty definitely was highlighted. In his essay, Gawande speaks about ars moriendi(the art of dying) and further goes on to speak about illness and uncertainty stating that “these days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition—advanced cancer, progressive organ failure (usually the heart, kidney, or liver), or the multiple debilities of very old age. In all such cases, death is certain, but the timing isn’t. So everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost.”
I like to think that if I were to end up becoming ill again, and needing to re-enter into the depths of the taxing and debilitating experiences surrounding experimental chemotherapy, I would no doubt go through it, if at least for the sake of my parents. But if I were to think solely about my own self, I’m not sure I’d choose the uncertainty of a laborious treatment over some sort of hospice care or spending an allotted time with family and loved ones. Gawande actually brings up an interesting point about hospice care:
Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer.
Of course, all this is actually quite odd. I suppose one could argue that there is an unfairness to contemplating ars noriendi as a mere 25 year old. But it goes beyond that. As everything in life, of course there are numerous factors, but much like the nurse in the article who states “Ninety-nine per cent [of those in hospice care] understand they’re dying, but one hundred per cent hope they’re not,” there is still that human element of fight; a negotiation of the ars moriendi. I think the glaring struggle is the one that exists between suffering and the “unstoppable momentum of medical treatment.”
Sitting in that hospital bed, a part of me wanted to outright reject waiting for the hospital protocol to release me and just rip out my IV’s and cardiac wires and just walk right out. The job of my attending doctor was to do everything in her power to make sure nothing was left uncovered, even if that meant the trade off was my discomfort. And as much as I wish I could blame her or be against it, I could obviously understand why she was doing what she was doing.
Gawande speaks about the human impulse in the face of illness:
This is a modern tragedy, replayed millions of times over. When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?
I assume that I can never speak for another person in the situation of making a choice, but I believe that oftentimes, the choices these patients(as well as myself) make are not choices made for just themselves. They oftentimes include the factors related to family and loved ones. Of course this isn’t in every situation. I suppose it’d be much simpler to make a decision entirely upon oneself. I know it’d make things much easier for myself.
As a patient, I do understand the health care repercussions and arguments of the high costs of terminal illness. I understand the viewpoints of some individuals who have said directly to my face that they shouldn’t be paying taxes to pay for some random hospital patients they don’t know who are taking up millions of dollars to stay on life support even though they are brain dead. I understand it. As a patient myself, I do think that would be something I would consider; Whether the burden of my illness should be put upon others. I suppose it’s too simple to say it’s too complicated. What should the conversation be between a patient and a physician?
Gawande goes on to speak about his conversation with Dr. Susan Block, a palliative-care specialist who is nationally recognized in training doctors and others about managing end-of-life issues with both patients and their families:
“You have to understand,” Block told me. “A family meeting is a procedure, and it requires no less skill than performing an operation.”
One basic mistake is conceptual. For doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. They focus on laying out the facts and the options. But that’s a mistake, Block said.
“A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.
There are others who do argue about the role of physicians being clear cut. I’m really glad Gawande brings up this point and relates it to what was supposed to be a part of the new health-reform act:
Given how prolonged some of these conversations have to be, many people argue that the key problem has been the financial incentives: we pay doctors to give chemotherapy and to do surgery, but not to take the time required to sort out when doing so is unwise. This certainly is a factor. (The new health-reform act was to have added Medicare coverage for these conversations, until it was deemed funding for “death panels” and stripped out of the legislation.) But the issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is—what, in other words, we should and should not be paying for doctors to do.
At the end of it all, I don’t expect physicians to be perfect and know all the right answers and right prognosis. After all, we are all human. But I don’t think it’s too much to ask physicians to understand that their responsibility, in medicine is indeed to deal with human beings as they are. In these cases, you really don’t always have the opportunity to learn from your mistakes. A mistake or wrong decision can often mean your life. And not everyone has prior experience to draw from. And even if they do, that means nothing. In the end, I can safely say that I know i don’t want hospital stays or I.C.Us but it doesn’t mean that my 10 years as a pediatric oncology patient makes me experienced or knowledgeable enough to know how to avoid them.
I suppose the biggest lesson I’ve learned is not to focus on death as the targeted enemy. In the end, if death is your enemy, your enemy will always win this war. The focus is upon not just the simple statement of the “days you have left” but rather what these days consist of. The relationships. Your family. Your friends. Loved ones. Your faith. Whatever it may be for you, is where that focus should lie. And slowly you see death’s label as “enemy” fading away.
