Most of us have spent some time thinking about our own deaths. We do it with a sense of dreadful curiosity, but then we push it aside with “well, we’ve all got to go sometime.”
Unlike most people, I probably know the how, the why, and maybe even the when of that event. It is profound information that turns the world upside down for us, our families, friends and caregivers.
I have cancer that is incurable, aggressive, and has negligiblesurvival odds. My chemotherapy is a long shot. I will leave a spouse, children, siblings and a life that I love and cherish. I cannot imagine existence without them.
I have read the books about stages of grief and end of life. But when all is said and done, truth is the great measure. The truth between doctor and patient when there is nothing else to be done. The truth between patient and family who want desperately to have a few more months or days and cannot. The truth between patient and friends who must accept and move on without bitterness. The truth between patient and spouse, partner, or caregiver who have waited for that moment and are helpless to change it.
Not long ago the Atlantic published a provocative article entitled “The Robot Will See You Now.” Using the supercomputer Watson as a starting point, the author explored the mind-bending possibilities of e-care. In this near future, so many aspects of medicine will be captured by automated technology that the magazine asked if “your doctor is becoming obsolete?”
The IT version of health includes continuous medical monitoring (i.e. your watch will check all vital functions), robotic surgery without human supervision, lifelong personal database with genetic code core and intensive preventive care modeled for each person’s need; all supervised by artificial intelligence with access to a complete file of medical research and findings. The e-doctor will never forget, never get tired, never get confused, never take a day off and will give 24/7 medical care at any location, anywhere in the world, for a fraction of the cost. Perfect care, everywhere, at every moment, for a pittance.
While the transformation for doctors seems clear, a shift from being at the core of medicine to being what the article described as “super-quality-control officers,” what intrigues me is not how doctors will change (retire); the real question is how patients will adapt to this new healthcare world? Particularly when experiencing extreme or life threatening illness, will patients accept that family, friends and a pumped up Ipad are enough?
My father, sister and I sat in the near-empty Chinese restaurant, picking at our plates, unable to avoid the question that we’d gathered to discuss: When was it time to let Mom die?
It had been a grueling day at the hospital, watching — praying — for any sign that my mother would emerge from her coma. Three days earlier she’d been admitted for nausea; she had a nasty cough and was having trouble keeping food down. But while a nurse tried to insert a nasogastric tube, her heart stopped. She required CPR for nine minutes. Even before I flew into town, a ventilator was breathing for her, and intravenous medication was keeping her blood pressure steady. Hour after hour, my father, my sister and I tried talking to her, playing her favorite songs, encouraging her to squeeze our hands or open her eyes.
Doctors couldn’t tell us exactly what had gone wrong, but the prognosis was grim, and they suggested that we consider removing her from the breathing machine. And so, that January evening, we drove to a nearby restaurant in suburban Detroit for an inevitable family meeting.
She was 94 years old with advanced Alzheimer’s. She thought it was 1954 and asked if I wanted tea. Not a bad memory for someone in a hospital bed with a broken left hip.
She’d fallen at her assisted living facility. It was the second time in as many months. She’d broken her collarbone on the previous occasion.
Over the past year, she’d lost thirty pounds. This is natural in the progression of Alzheimer’s. But it’s upsetting to families all the same.
My patient was lucky. She’d lived to 94, and had supportive children who were involved in her care. Her son had long ago been designated as power-of-attorney for her health care. This meant officially that his decisions regarding her care were binding. She was not capable of making sound decisions, medical or otherwise.
The patient had been under the care of a geriatrician. His office chart told me that the option of hospice and palliative care had been discussed with the family. They were interested in learning more; the son had agreed that “Do Not Resuscitate” status was appropriate for his mother. Doing chest compressions on a frail 94 year-old is something none of us want to do.
The morning after her hospital admission for the broken hip, the medical intern called me with an ethical dilemma: “She’s DNR,” the intern explained. “She’s having intermittent VTach on the monitor, and I fear she won’t be stable enough to have the hip repaired. The family is open to the idea of hospice, but I don’t know whether to treat the arrhythmia or not.”
Elaine (not her real name) is one of our brightest interns. She’s thinking about going into geriatrics. Situations like this are in many ways the most meaningful for doctors. Too often we stress about minutiae at the expense of the big picture; helping guide a family and patient through a period of critical illness is of true service.
Next Tuesday, those of us registered in Massachusetts will have the opportunity to vote on “Question 2″ – prescribing medication to end life, otherwise known as physician-assisted suicide.
As described by the state secretary, “This proposed law would allow a physician licensed in Massachusetts to prescribe medication, at a terminally ill patient’s request, to end that patient’s life. To qualify, a patient would have to be an adult resident who (1) is medically determined to be mentally capable of making and communicating health care decisions; (2) has been diagnosed by attending and consulting physicians as having an incurable, irreversible disease that will, within reasonable medical judgment, cause death within six months; and (3) voluntarily expresses a wish to die and has made an informed decision.”
There are, of course, a number of other safeguards built in, such as the need to make the request twice, separated by 15 days, in the presence of witnesses. However, there could probably be stronger safeguards to protect individuals who are experiencing depression and anxiety, and might have preferable alternatives to physician-assisted death.
“I will give no deadly medicine to any one if asked, nor suggest any such counsel.” This is an excerpt from The Hippocratic Oath – the oath that guides my practice as a physician. On the November ballot, the Massachusetts Question 2 about physician assisted suicide, runs contrary to the foundation of medical practice. Since the 5th century BC when Hippocrates crafted the oath, the notion of Physician Assisted Suicide (PAS) has been debated in Western Society and repeatedly rejected as a violation of civilized behavior.
If adopted, MA Question 2 would legalize PAS for terminally ill patients who have fewer than six months to live. The assumptions underlying this question are erroneous. In 27 years as a primary care physician, I have never told a patient how long he or she has to live. An individual lifespan is scientifically impossible to predict with exactness. Time and time again, standards in medical literature that project survival for particular diagnoses are wrong. Today in my practice, I have numerous vibrant patients who have long outlived calculated life spans. This is not only for people with cancer, but diseases like multiple sclerosis, chronic obstructive pulmonary disease, kidney failure and heart failure. I never tell my patients how long they have to live. Why? Because the best prediction is based on old literature and past practice. New therapies combined with preventive and behavioral medicine change the true experience of each disease.
What motivates some people to elect PAS? Those who support Question 2 typically cite the patient’s right to self-determination and desire to avoid pain. But, the little we know from pre-death interviews in states such as Oregon, Montana and Washington shows otherwise. Some patients claim that it is their inability to do what they want to do that motivates their desire for death. Not wanting to burden loved ones can also motivate the choice to elect suicide. For my work as a physician, part of the job is helping patients and families to adjust to new circumstances. People who fear losing control of basic bodily functions can grow to realize that their humanity is about so much more than those acts. Despite new limitations, they can still fulfill significant roles in their communities and families. Furthermore, clinical depression is present in at least 25 percent of people with chronic illness. Depressed people think about suicide. Depression, however, is treatable. Question 2 does not mandate that the patient submit to evaluation and therapy for depression. Furthermore alleviating pain and suffering is the objective of all doctors. Some even specialize in hospice and palliative care.
In late 2011, I wrote an essay called “How Doctors Die.” Drawing on my observations and experiences as a doctor, I reported that doctors tend to seek less end-of-life care than ordinary patients do. They know when further treatment is likely to be futile and when life would cease to be worth living. The point I wanted to make was that all of us should have the choice to die that way if we wish—at home, with family, without dramatic hospital interventions, without pain.
The response to this simple idea was overwhelming. I read thousands of comments people posted online regarding the end-of-life care of loved ones. They told of near-dead relatives being assaulted with toxic drugs and painful procedures for no good reason. I am haunted by one description of a patient who could neither talk nor move, begging with her eyes for it all to stop. Thankfully, such stories are slowly becoming less common, and, with an advance directive or POLST, you have considerably better chances of having a peaceful death, if that is what you want.
While the article rarely provoked hostility, it did, among some readers, prompt skepticism. I’d written the article in a personal, anecdotal style, so I rarely made use of numbers, studies, or charts. For example, Ezra Klein, writing in The Washington Post, wanted to see more evidence for my assertions. “Does anyone know of data on end-of-life spending for doctors?” he asked. “Or even on the percentage of medical professionals who have signed living wills?”
For those of you who haven’t yet heard, I have recently been diagnosed with Stage IV inflammatory breast cancer. This rare form of breast cancer is known for its rapid spread. True to form, it has metastasized to my spine. This means my time is limited. As a nurse, I knew it from the moment I saw a reddened spot on my breast and recognized it for what it was.
My recent journey through the health care system has been eye-opening. In only a few months, I have witnessed the remarkable capabilities and the stunning shortcomings of our health care system firsthand. I am writing here because in the time I have left, I hope my story and my journey can help illustrate why some of the reforms that my colleagues and I at the John A. Hartford Foundation, as well as many others, have championed are so important.
At the cancer’s earliest appearance, I consulted with a well-regarded oncologist in New York. After the tests were done she regretfully informed me that my disease was not curable. Because my cancer is hormone-receptor-positive, she recommended an evidence-based course of medications aimed at slowing the progression of the disease. Before I committed to this course of care, I wanted to get a second opinion. I secured an appointment with the pre-eminent researcher/clinician in the field of inflammatory breast cancer, at a top medical institution in Philadelphia.
Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.
It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.
Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).
Imagine for a moment that you are an oncologist caring for a 53-year-old man with metastatic cancer, a person whose tumor has spread to lung and liver.
With standard chemotherapy, this man can expect to live around 12 months. That standard treatment isn’t all that expensive in today’s terms, only $25,000 and his insurance company will pick up the entire tab since he is already maxed out on his yearly deductible and co-pays.
But wait! Before prescribing the standard treatment, you find out there is a new chemotherapy on the market, one that costs $75,000 (in other words, fifty thousand dollars more than usual care) and has no more side effects than that standard treatment.
How much longer would patients like this have to live, on average, for you to feel that this new chemotherapy is warranted?
That’s not an easy question to answer. But it’s not an impossible one either. Clearly if the treatment would provide only, say, 1 day of additional survival on average, that would not amount to $50,000 well spent. Just as clearly, if this man could expect 10 years of additional life, no one would deny him this new treatment.
So when, between 1 day and 10 years, does it become a tough call whether to prescribe this new treatment?