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Weighing Potential Benefits Against Risks and Burdens for the Terminally Ill
All the passages below are taken from the book “The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life” By: MD, Ira Byock. It was published in 2012.
When my good friend Herb Maurer was diagnosed with a bad cancer, I knew he was likely to die of it— so did he. In the treatment decisions that lay ahead, I didn’t want him just palliated (a phrase I detest when other doctors say it). Certainly, I expected and would make sure that expert attention was paid to Herb’s comfort and quality of life. However, if there was a decision to be made at the moment, plainly and simply, I wanted him cured.
I remember the afternoon in March 2007 when he told me he was ill. I was walking down the carpeted central corridor of the medical center called Main Street. I thought I noticed Herb’s distinctive hulking frame in the distance, lumbering toward me among the pedestrian stream. I was headed toward the cancer center on the ground floor and just approaching the rotunda, a large open area with a broad granite-countered octagonal information desk that sits directly below a pyramidal glass ceiling— the medical center’s landmark architectural feature. It is an intersection that has the feel of a busy thoroughfare or mall. Main Street was sun-drenched that spring day.
“Herb, how are you? Haven’t seen you in months,” I said as we shook hands.
Herb Maurer was one of the smartest oncologists and most dedicated physicians I have ever known. He was prone to dress informally, but his jeans and flannel work shirt were a bit worn and torn, even for Herb.
He smiled wanly and said, “Well, I’ve got cancer,” in a mockingly matter-of-fact tone.
“What? What kind of cancer? Tell me you’re joking, right?”
We were standing in windowed sunshine, in the most public of places, with the medical center’s professionals, outpatients, vendors, and visitors coursing around us.
“No, it’s no joke. I got jaundiced over the weekend and went to the emergency department. They ran a screening panel and, sure enough, my LFTs [liver function tests] are up. A CT scan showed a mass at the common duct. I just came from Greg’s office,” he added, referring to Greg Ripple, an oncology colleague. “I figure I either have pancreatic cancer or a cholangiocarcinoma. I am betting on cholangio because I am also anemic.” By the end of his explanation, his voice had assumed an academic tone, as he wondered aloud about an interesting detail of his own clinical presentation.
“I am headed right now to see Stu Gordon for an ERCP to have him biopsy this damn thing and see if he can place a stent,” he said, his voice still slightly detached.
“Oh, shit, Herb,” I said. “How are you holding up? How is Letha taking this news?” In addition to being husband and wife, Herb and Letha, who is also an oncologist, shared a busy medical practice in nearby Vermont.
“Well, it sucks. She’s having a hard time, I think. We are just taking things one day at a time. I am likely going to need your services before too long. But for now, I am going to see what we can do. I’ll need a PET-CT [positron emission tomography– computerized tomography] scan later this week and we’ll see if there is any chance of getting this thing out.”
I watched Herb head off to endoscopy for his ERCP, short for endoscopic retrograde cholangiopancreoscopy. The gastroenterologist, Dr. Stuart Gordon, would give him intravenous medications to relieve the pain and sedate him. Then, as Mr. Thorsen’s gastroenterologist had done for him, Stuart would pass a flexible lighted scope through Herb’s mouth and throat, down his esophagus to his stomach, and into his duodenum, the first part of the small intestine. Stuart would identify the opening (or ampula) from which bile from the liver and gallbladder and the digestive juices from the pancreas flowed into the duodenum. He would then thread a slender guide wire upstream (retrograde) into the duct system and pass a small plastic brush attached to another wire through the scope. Any cells that were collected on that brush would be sent to a pathologist who could examine them for evidence of cancer. Before removing the scope, if possible, Stuart would pass a short, thin metal stent over the guide wire and position it within the duct to keep bile draining into the duodenum.
The PET-CT scan Herb was scheduled to have later in the week is a combined scanning technique for revealing sites of metabolically active tumors in three dimensions corresponding to computerized images of a person’s internal anatomy. In Herb’s situation it was intended to find— or hopefully exclude— sites of metastatic cancer. If present, it would mean his cancer was Stage IV and that surgery was out of the question.
Even now, he knew well that prospects for surgery were slim. And yet surgery was the only chance he had of cure. He knew that, too. Today, there were no decisions to be made. But Herb knew that he would likely be wrestling with treatment options in the near future.
He was painfully aware that his chances of “getting this damn thing out,” as he put it, were slim at best. Whether it was “cholangio” or pancreatic, very few people survive cancer in this region of the body. Those who do usually have their cancers found by accident, before the malignant growths have caused any symptoms and before they have spread, even microscopically. Nevertheless, Herb was determined to exert due diligence and hope for the best. It is what he would have done if he were the oncologist for a patient with the same condition. And as a faculty member of Dartmouth’s Hematology-Oncology Fellowship program, it is what he had taught dozens of oncologists-in-training to do.
Herb became an oncologist before there was such a thing. Early in his career, after returning from a stint as an army physician in Vietnam, Herb gravitated toward treating people with cancer. When he started in practice the body of knowledge concerning cancer treatment had not yet earned specialty status. He absorbed the science of oncology like a sponge and seemed to intuitively understand the myriad ways cancer plays mischief— and wreaks havoc— with people’s bodies. In addition to becoming a consummate clinician, Herb conducted early research in the treatment of lung cancer that pushed the forefront of the fight against the disease. And he was a driving force in founding the Norris Cotton Cancer Center at Dartmouth, where I now work.
But those descriptions barely begin to describe the man. Herb was multitalented, a man of strong beliefs— which he loudly voiced— on everything from the right treatments for lung cancer to national politics, from raising children to gourmet cooking, from furniture making to visual arts— and an irreverent, uproarious sense of humor. Having dinner with Herb and Letha would always stimulate and nurture my palate, mind, and soul.
He was an imposing figure. Herb’s tall, muscular frame, bushy, full-curl, handlebar mustache, booming voice, and sartorial preference for checkered flannel shirts made for odd first impressions. Think Paul Bunyan meets Wilford Brimley. Herb tended to mumble, making him sound like a baritone with a mouthful of marbles and often making it hard to be sure what he was saying. When he asked a question that someone didn’t understand, he would repeat it louder. Only occasionally did that help. When he was annoyed or impatient— which was not uncommon— his deep sonorous voice sounded like rolling thunder. Often you still couldn’t be sure just what he was saying, but you knew he really meant it!
For all his bluster, there was not an unkind spicule of bone in Herb Maurer’s body. Herb exuded warmth and most patients fell in love with him within the first ten minutes. His melodious mumbles and genuine concern melted people’s fears (although I was never entirely certain they understood what he said). A hug from Herb could soothe a patient more than any medication ever made.
No wonder they bonded to him. On admission to the hospital people he cared for would proudly identify themselves to staff saying, “I am one of Dr. Maurer’s patient’s.” The loyalty flowed both ways. Years after he and Letha had left the medical center to go into private practice together in a nearby town, Herb would show up on weekends, in a flannel shirt and snow boots, to make social visits to any of his patients who happened to be in our university hospital.
Actually, except for the outer coat he carried and sneakers he wore, he didn’t look all that different that day at the rotunda.
“So, why don’t you check in with me later in the week— or call Letha,” Herb said. He was ready to move on. Our chance encounter had lasted barely two minutes, but I could sense that Herb wanted to stay focused on getting through his appointments and scan. The appointment he had to get to provide a good excuse to curtail our conversation before it got too sad or sentimental.
“Okay. Take care of yourself, will ya?” I said, not even knowing myself what I meant.
“Yeah.” He waved to me as he headed off to the fourth floor.
It didn’t seem real. As I walked on I realized I had just got a small dose of what Herb and Letha must have been feeling the past few days. It was disorienting. They must be emotionally reeling, I thought, trying their best to maintain, or regain, an even keel. His cancer had taken hold not just of his body, but of his and Letha’s lives. I wondered what the best care was for Herb now and what it would entail in the future.
It is a basic tenet of medical ethics that, except in dire emergencies, consent from the person being treated is required before any treatment is administered. When the patient is an underage child, parents are the ones who consent. When the risks of a treatment are significant— such as surgery or radiation or chemotherapy— formal “informed consent” is required, which usually entails patients (parents or designated decision-makers) signing a consent form attesting that they understand and accept the risks of the procedure.
The usual analysis of risks and potential benefits is straightforward: imagine a simple balance scale, in which the risks and potential benefits are at either end of a plank, supported by a central fulcrum. In this idealized metaphor, the plank begins perfectly horizontal, representing equipoise in the decision-making process, absent prejudice or predilection on the parts of either physician or patient. Of course, every physician applies his or her own judgment before ever suggesting a treatment to a patient. Doctors are trained to go through a “risk-benefit analysis” in their own minds to see if the treatment is even worthy of consideration.
But as medical treatments for serious conditions have become more sophisticated— often more risky but also more effective— ethical guidelines have evolved to respond to real-world complexities.
Today best practice in informed consent requires a process called shared decision-making. As the term implies, shared decision-making entails the collaboration of physicians and patients to examine the risks and potential benefits of a proposed treatment, balanced against the risks and known burdens of treatment in the process of coming to a joint decision about a treatment plan. Although it seems almost self-evident that decisions should be reached in this manner, traditionally medical decisions were made primarily, if not solely, by doctors.
One of the pioneers of this new, collaborative approach to health care decision-making is James Weinstein, an orthopedic surgeon and health service researcher. In the early 1990s, Weinstein was a prominent spine surgeon who recognized that there were pros and cons to operative and nonoperative treatments for back pain, even when a discrete problem, such as a slipped disk, could be diagnosed. Although patients who had surgery might feel better faster, there were uncommon but very serious immediate perioperative risks. He also noticed that by three or six months, patients seemed to do fairly well in terms of pain and function whether they had had surgery or conservative treatments, including physical therapy. Dr. Weinstein felt it was incumbent on him to carefully explain the risks and potential benefits of back surgery, and for the final decision to be one that he and his patient shared. This process seemed intuitively sound and was warmly received by patients. Weinstein convinced his colleagues at DHMC’s Spine Center to make this enhanced approach to informed consent standard practice.
Within the medical center, Jim Weinstein’s approach gradually earned broad support. The Center for Shared Decision Making opened in 1998. Situated on Main Street, between the rotunda and the food court, the center is in a prime location that is intended to encourage walk-ins. There, people can find printed or video information about common surgeries, and treatments for cancer, lung and heart disease, kidney dialysis, and transplantations, and can receive one-on-one counseling if they wish. Someone who is healthy and considering whether to donate a kidney or portion of their liver to a relative or close friend can also find information or get questions answered at the center.
Nationally, Weinstein helped to establish the Foundation for Informed Medical Decision Making, which developed a series of evidence-based booklets and videos to fully inform patients who were considering whether or not to undergo tests or treatments for health problems for which there were no clearly right or wrong choices. The list of situations that the foundation addresses continues to expand: Whether to take hormone replacement therapy for menopausal symptoms? Whether to have a lumpectomy followed by radiation or a mastectomy if you’re a woman who’s been told you have early stage breast cancer? Whether to undergo a PSA (prostate-specific antigen) screening test for prostate cancer if you are a healthy fifty-year-old man? Whether to have radiation or a surgical prostatectomy if diagnosed with prostate cancer? In addition to cancer, there are materials on whether to treat your child’s attention deficit disorder with medications, how to consider institutional versus home care for a parent with dementia, and on and on. All of this represents a dramatic shift from the way medicine has traditionally been practiced. In providing evidence-based guidance directly to patients and their families, the foundation and DHMC’s Center for Shared Decision Making are advancing an important trend in health care for the twenty-first century.
In 2003 Jim Weinstein became the chair of the Department of Orthopedic Surgery. Under his stewardship, formal decision-making processes became part of the routine evaluation for back and spinal surgeries. He subsequently became director of The Dartmouth Institute for Health Policy and Clinical Practice, which advances decisional science and its application in practice, and in 2011 Weinstein became CEO and president of Dartmouth-Hitchcock Medical Center. It is fair to say that shared decision-making is well established within the ethos of the institution.
As an oncologist, Dr. Herb Mauer was already well-informed. And by temperament, there was never a doubt that Herb would be firmly in charge of decisions about what types and how much treatment he received. Yet, despite his many years of doctoring— or more likely because of his long clinical experience— he continually invited input and welcomed help from his doctors, friends, and family. Herb valued the expertise and wise perspective of his physician colleagues and did not make any major decisions without their considered opinions. Indeed, this collaborative approach had long been the way he practiced. In deciding whether or not to have any given treatment— and he had many— Herb spoke at length with Greg Ripple, his medical oncologist, and, depending on the specific treatment, with Bassim Zaki, his radiation oncologist, John Gemery, his interventional radiologist, and Stuart Gordon, his gastroenterologist. Also consistent with the way he practiced oncology, Herb wanted to be aggressive in treating his disease, but not foolish.
He knew the score— down to the details of every pitch. Ampullary carcinoma is highly life-threatening and very often lethal. It is actually slightly less lethal than either pancreatic cancer or bile duct cancer, each of which can cause identical symptoms and presentation. The only way to tell these different diseases apart is by looking at tumor cells under a microscope, conducting tests of serum biomarkers, and examining the genetic profile of the tumor.
People with cholangiocarcinoma, cancer that arises from bile duct cells, generally survive between two and a half and just over four years, depending on the size of the tumor, whether it has spread to lymph nodes or beyond, and whether there is microscopic infiltration of cancer cells into the outer lining of small nerves in the tissue surrounding the tumor. Larger tumors, those that have metastasized to lymph nodes or the liver or lungs, and those with perineural invasion all portend lower survival.
Within a week after being diagnosed— it turned out to be a cholangiocarcinoma as he’d suspected— Herb underwent a pancreoduodenectomy, a modified Whipple procedure. It was a big operation that typically requires months of recuperation as the gastrointestinal track adapts to the change in anatomy and digestion. But Herb sailed through surgery and recovered with remarkable speed. His indomitability seemed intact.
The surgery had removed all visible signs of cancer. The edges of the tissues removed— a portion of his duodenum, bile ducts, and pancreas— showed no signs of cancer under the pathologist’s microscope. All of that was hopeful, but neither Herb nor his doctors thought that the cancer was gone. As soon as his wounds were healed, he decided to begin an aggressive course of chemotherapy, intended to kill or at least slow the growth of any remaining cancer cells.
Most cancer chemotherapy drugs are toxic to normal, healthy cells, particularly those that divide and reproduce often— such as cells lining the intestines, mouth, and hair follicles, and the blood-forming cells in bone marrow. Herb had been administering these agents— and more toxic earlier drugs— to cancer patients for years. He was all too aware of their side effects. Remarkably, however, Herb once again sailed through. Although his legendary appetite and digestion diminished for a while, and he lost a few pounds, he maintained his strength and for several months was even able to continue seeing patients two days a week.
Herb was passionate about life, which was why he fought so hard to preserve the lives of others. The lust for life that marked everything Herb did was undiminished by his illness; if anything, his illness increased his love of life. He was determined to use whatever time he had to live well— at least the time that wasn’t conscripted to tests, outpatient treatments, or complications that landed him in the hospital.
In outward appearances Herb’s overriding focus was fighting the cancer. He was not one to talk openly about his feelings or private thoughts. But as his friend and one of his physicians, I knew he was thinking about the broader, personal implications of his illness.
Roughly six weeks after his surgery, Herb asked me to see him clinically. He explained, “I am not there yet. But I’d have to be mighty lucky for this thing to go away, and I don’t feel that lucky. You and your group are good at helping people through this. I want to make sure I don’t overlook something that is important. I particularly want to do this right for Letha and my kids.” He waved his hand in a gesture that telegraphed, “You know, the stuff you talk about in your books,” before he said so aloud.
Despite his gruff, burly exterior, Herb was a physician who recognized the impact cancer has on the inner, tender, most personal aspects of people’s lives. Whenever he referred patients to me he’d either buttonhole me at a Tumor Board meeting or call me up and tell me a bit about the person he wanted me to see before they made the appointment. Usually the people he referred had one or more complicated relationships and conflicts that were unresolved in their personal life.
A few patients subsequently told me that Herb had also suggested that they pick up The Four Things That Matter Most, a book I had written in which I talk about the value of people saying four things to one another before good-bye: Please forgive me. I forgive you. Thank you. I love you.
Now that he was ill, Herb took the advice to heart. With the same honesty that marked his treatment decisions, Herb had begun thinking about what would be left undone in his personal life if he died suddenly. He told me it was time to get around to things he had been putting off in the midst of a hectic professional life.
Herb had been married before and his first wife never forgave him for the separation. She remained angry with him through all these years and they had virtually no contact. Herb wanted to reach out to her, just to let her know that she still mattered to him.
They were parents of a son and daughter, now in their forties, whom Herb loved dearly. In recent years their mutually hectic lives made it hard to visit, and Herb felt he didn’t see his older children and grandchildren nearly enough.
He and Letha also had children— three sons who were now young men scattered at colleges across the country and Scotland. His illness felt to Herb like a burden he would be imposing on all of them.
He brought up “the four things,” so we started there.
“For sure,” it would be good to say those things to each of his children, he said. However, his sense was that his first wife was still so angry with him that she would not sit still for such a conversation. He didn’t think she would even tolerate him expressing his regrets and asking for forgiveness. I suggested he might write to her. In that way he’d be able to say what he wanted without the risk of heated emotions taking him off message.
We also talked about what he might expect in terms of a response from her. I reiterated a guideline I have been teaching for years: you can only be responsible for your side of any relationship. If, as Woody Allen observed, 80 percent of success is showing up, in situations of this nature, the other 20 percent involves arriving with good intentions. If our intentions are good and we are willing to ask for and offer forgiveness and express gratitude and loving feelings for another person, we usually feel better for having made the effort. Sometimes that needs to be enough. If the other person responds warmly, that’s great. But, in matters of this sort, there is intrinsic value in making a good-faith effort. He said that all of this made sense and he would give it some thought.
I asked his thoughts on leaving a legacy for his children, grandchildren, and generations to come. Earlier in the spring, Letha and Herb had attended an evening public lecture at the medical center on the topic of ethical wills, hosted by our Palliative Care Service. The presenter, Dr. Barry Baines, is a palliative care physician from Minnesota who has been revitalizing the ancient tradition of ethical wills as a way for adults, especially parents, to write down bits of family history, things they think are most important, the values they hold highest, and special wisdom they want to leave to their children and future generations.
“Yes,” he said, “Letha and I have talked about both of us setting aside time to do it.”
In cancer of this sort, most victories tend to be short-lived. And so it was that Herb’s cancer did recur, to his and all of our disappointment, but to no one’s surprise.
Somehow, over the years he had integrated so much experience treating the disease that he had acquired a knack of thinking like different types of tumors. Perhaps because he had expected the cancer to return, he was prepared and able to maintain a problem-solving approach to each new obstruction to bile flow or bleeding that occurred.
Now more than ever Herb made full use of medical opportunities to extend his life and alleviate his discomfort. He was selective in choosing aggressive treatments. He took three rounds of potent chemotherapy. He had surgery to bypass an intestinal blockage. When he became jaundiced, he had endoscopic and radiology procedures to stent or re-stent clogged bile ducts or to control bleeding. In total, he underwent eighteen CAT (computerized axial tomography) scans and eight or more treatments.
Herb knew that every one of these interventions came with pain and risks of bleeding or infection. In fact, he ended up in the hospital on three occasions with fevers from bacteria in his blood after these procedures.
Through it all he never denied how seriously ill he was and how threatened his life was. Before any treatment decision, Herb would take stock; he, Letha, and his physicians would weigh the chances that the treatment would work against the discomfort and risk that it would bring. He would honestly discuss his current quality of life and whether it was worth sustaining. In Herb’s case, for many months, the honest answer was yes.
Nevertheless, every time he was hospitalized, he made sure that there was a DNR order in his medical record. As much as he wanted to live, if his heart suddenly stopped, he wanted to die naturally. He didn’t want anyone to perform CPR because he knew that even in the unlikely event that it restarted his heart, it would just mean that he would die in an ICU.
Despite weakness that forced him to nap most days and eventually to get around with a cane, Herb’s quality of life remained well worth sustaining for over two years. Early on he had been able to work part-time, travel to see his children and their families, paint, and garden. Over time his energy and ability to do the things he most enjoyed took a stair step down with each new episode of biliary obstruction, bleeding, or infection and the corresponding percutaneous procedure and hospitalization. Whenever he felt stronger, he resumed chemotherapy, which may have extended his life, but also took a lot out of him. Each step was a new normal. He took things slow, adjusted his expectations, and relied more and more on Letha to get around.
For Herb, the process of balancing the potential benefits versus the risks and burdens of any proposed treatment rested on his current quality of life at this late stage of his illness. No cancer treatment could substantially improve his quality of life. He was already fighting just to hold steady against the downstream current. Each time a new complication occurred, a procedure could, at best, reestablish his most recent “new normal” life. In basing his decision-making on his running assessment of his own quality of life, it was as if the very ground on which Herb stood leaned either toward or away from a proposed treatment. This was a thoughtful and highly personal geometry. But in general he adapted and found ways of making his days worthwhile.
Eating was one way. Remarkably, until the last week of life, he had a pretty good appetite and thoroughly enjoyed each evening’s meal. That meant a lot to Herb. Whenever we discussed one of the proposed treatments, he would comment on his appetite.
One morning, I visited Herb in the hospital. He had been admitted for another interventional radiology treatment, this one to cut off blood supply to part of the tumor in his liver. Herb told me, “I’ve been having full meals— from appetizers to desserts— and enjoying them.” It was his way of literally bringing gut instinct to making decisions. The balance clearly tilted in the direction of preserving life.
On a Saturday evening a few weeks before he died, my wife, Yvonne, and I had dinner with Herb and Letha at their home. We started with oysters and gin and tonics, and then feasted on pizzas homemade by their son, Jason.
I remember thinking, once again, it all seemed so surreal. It was tragic, and yet there was a point during dinner when Herb looked at me with his head cocked, shoulders hunched, and brows arched, and I had to laugh. In that moment, with his innocent, quizzical expression and full-curl mustache he resembled Salvador Dalí against a backdrop of oysters on the half shell that looked a lot like Dalí’s surrealistic melting watches.
When his lack of energy and increasing discomfort dragged his quality of life down and shifted the potential benefit-burden balance, Herb entered hospice care. He and Letha welcomed the help at home. For several weeks he held court as a virtual parade of people visited. On what turned out to be his last evening, Herb sat with his family, viewing hundreds of pictures of their lives together. The next morning, he felt too weak to get up and spent the day in bed. He was comfortable, except for an episode of losing his breath that required an injection of morphine followed by an injection of midazolam, emergency medications that our palliative care team and the hospice had in place. Thankfully, they worked to soothe his discomfort.
During the last hours of his life, Herb opened his eyes, smiled, and gave a “thumbs-up” to a good friend who had stopped by. His hospice nurse was there. He was surrounded by Letha, his children, his grandchildren, and close friends as he took his last breath.
It would be easy to lionize Herb, but it would not do him justice.
He was a brilliant, talented, funny, and warm human being. During his funeral and later at a memorial service held at the medical center, person after person told stories of Herb’s intellect, compassion, humor, and quirks. People commented on his courage and integrity during the past two years. It was all true. But below his usually calm— fatalistic— demeanor, things were turbulent. He didn’t take to illness and dying easily.
Herb’s deeply personal, emotional struggles with his cancer are what make his deliberations about treatment— his negotiations about his diminished life, double-edged treatments, and death— so authentic and valuable as examples to me and others. He didn’t embrace his illness— it still sucked— he merely accepted the reality of it and, of necessity, dealt with it. Herb’s adaptation was not a New Age experience or any sort of spiritual transformation. It was Human Development 101. Herb saw his illness and dying as another crisis of life, something one could only try to avoid for so long. Ultimately, he had to face it and, if he could, grow through it.
Letha told me that Herb had sent his first wife a letter but had never heard back. She shrugged but added that Herb had said he’d felt better for having tried.
Faced with a situation that can break a person, shattering his or her sense of self and hope for the future, it is easy and almost seductive to succumb to suffering. When one’s very body is literally eroding and one’s world is falling apart, suffering exerts a gravitational pull. When personal annihilation awaits, it requires a conscious choice to avoid surrendering to depression and the depths of existential despair.
Herb’s refusal to succumb was entirely consistent with his character. He chose to suck it up. His first priority remained the well-being of Letha and his children and extended family. Herb dealt honestly with the changes that his illness imposed. As a result, he lived through his illness and dying personally intact. He died well.
There is no universally right way for a person to die. What constitutes dying well for one person might be entirely wrong for another. The word “well” is both an adverb and an adjective. It can describe not only the dying process but, more important, the person who is dying. Herb was well as he was dying. Dying is the hardest, least desirable time in any of our lives. But it is possible to feel well within oneself and right with the world even as one dies. Therein lies hope for us all.
The costs of Herb’s care during the thirty months from his diagnosis to death easily exceeded $250,000. Because Herb was older than sixty-five (he was sixty-eight when his cancer was diagnosed), Medicare paid for nearly all of it, including most of his medications.
As expensive as his final two years of life were, had he not continually balanced his love of life with his quality of life and desire to be at home with family at the end, it could have been much more expensive.
If Herb had decided to go back to the hospital on the morning he became sick for the last time rather than stay at home under Letha’s and hospice care, he might well have lived a week or two longer, but would also likely have ended up in the ICU. The costs of those last days could have easily reached another $100,000.
From their perspective, Herb and Letha were simply carefully employing available medical treatments to make the best of a bad situation. The best care possible for Herb meant carefully applying medical science and technology to stem the tide of his cancer.
AS IT HAPPENED, during the last months of Herb’s life I had participated in a conference on public policy related to end-of-life care. After the conference, a health journalist spoke with me concerning a magazine article she was working on about the “economics of dying.” She asked my thoughts about for-profit medicine, overtreatment, the effects the high costs of end-of-life care have on other social programs, and, of course, rationing of health care.
It was a lively discussion. She said that she wanted to talk to a patient who was clearly dying but continuing to receive treatment that was exceedingly expensive. She was looking for one or more examples of egregious treatment that just might be motivated not only by concern for patients but also by some self-serving gain on the part of the treating physicians or their medical institution— if not financial, perhaps in the currency of reputation.
I told her that as much as I would like to help, that was not where I thought the story lay. I explained that I see a spectrum of people with serious conditions who, most bluntly, do not want to be dead. They have doctors who do not want their patients to die. And those doctors have an impressive array of technology for keeping people alive. All of this results in a continuum of decisions and treatments ranging from courageous and wise to foolhardy, and clinical outcomes that range from miraculous to macabre.
I told her about a fifty-seven-year-old man, who had been referred to our palliative care team by the liver transplant service. From reviewing his chart I knew that, much like Herb Maurer, Aaron Kramer had felt fine until he developed jaundice. Unlike Herb, Mr. Kramer’s diagnosis was advanced cirrhosis, the result of a previously unsuspected hepatitis C infection that he had presumably acquired from briefly using IV drugs when he was in the military in his early twenties. He had unknowingly been harboring the “hep C” virus for years, as it silently inflamed and destroyed his liver.
Like both Herb and Gerry Thorsen, as soon as his jaundice was discovered, he underwent a slew of tests. When the hep C infection was found, the hepatologists— or liver specialists— at Dartmouth-Hitchcock started him on a combination of antiviral medications. For the first four months, he seemed to improve, but on routine follow-up testing, his serum level of alpha-fetoprotein was elevated, which is worrisome, since people with cirrhosis are at high risk to develop hepatocellular carcinoma. Sure enough, an MRI of his liver revealed two small tumors, highly suspicious for this primary liver cancer.
During a procedure by the interventional radiology team, one of the tumors was biopsied through a long thin needle that was passed just under his right ribs. A cytopathologist was on-site to look at the biopsy specimen under a microscope and confirmed the diagnosis of hepatocellular carcinoma or HCC. The two liver tumors were then destroyed by using radio frequency delivered through a needlelike probe that heated and killed the cancerous tissue.
Radio frequency ablation— or RFA— is an effective, often life-prolonging treatment for hepatocellular carcinoma. But it does not cure the disease. Once one locus of hepatocellular carcinoma occurs, it is a signal that others will almost inevitably follow. Most often, the new tumors are not true metastases. Instead of cells spreading from the original tumors to other portions of the liver, most are thought to be the same cell type of cancer that forms in different parts of the diseased liver, somewhat like a single strain of aggressive weed sprouting here and there in unfortunately fertile soil.
The only definitive cure for hepatocellular carcinoma is a liver transplant. But for someone with hepatitis C, after a successful transplant the virus reinfects the new liver and, even with antiviral medications, within a handful of years causes cirrhosis and, eventually, liver failure once again.
Still, for those lucky enough to receive a new liver, there is a 70 percent chance of living at least three years, and almost 60 percent of liver transplant recipients are alive fifteen years later. That is a stunning success rate for a uniformly fatal condition.
Of course, not everyone is that fortunate. About fourteen thousand people in the United States are on a waiting list for a liver transplant. (The median wait for a liver is just under a year nationally but varies regionally.) More than one in ten people will die before receiving a new liver. And at least another one in twenty leave the waiting list within six months. Many thousands of patients with liver disease never try to become “listed” because the evaluation process itself is so hard or because their condition makes them ineligible.
The hepatologists and oncologists in the Liver Failure clinic at DHMC wanted our team to help Mr. Kramer in adjusting to this difficult diagnosis, clarifying his goals for care and assisting in making decisions in the months ahead.
When we met Mr. Kramer he was still reeling from the latest bit of bad news. He had been hoping for a transplant but developed a suspicious lesion in his left lung. The day we met, his biopsy results had come back and, as feared, confirmed that the lung lesion was a metastasis. A liver transplant was now out of the question, since even one lung lesion was proof positive that there were other microscopic deposits of cancer lurking elsewhere. Even with a new liver, the disease was certain to recur somewhere.
He would now surely die of his disease. There were still some treatment options that could possibly slow the progression of the cancer— and Mr. Kramer’s oncologist at DHMC started him on sorafenib (Nexavar), which had recently been FDA approved for treatment of this disease. In clinical trials it has been shown to modestly extend the lives of liver cancer patients (by 2.8 months) and costs between $ 6,600 and $ 8,600 a month, not counting routine laboratory tests and physician office visits.
The health journalist was intrigued and wanted to interview the patient I had described. (Of course, I had not told her his name.) I gave Aaron Kramer a call and he readily agreed to be interviewed. Two days later they met and spoke for over an hour via Skype.
Early that evening she e-mailed me and we spoke by phone. She said that they had a fascinating conversation but that she didn’t think he fit for her article.
“Why not?” I asked. He was a dying person who was receiving exceedingly expensive treatments. She explained that during the interview he looked thin but fairly normal. He spoke about his current life, including his two daughters in graduate school, his horses— he is still able to ride— and the writing he was doing on a collection of essays he was trying to finish.
“Well, I’ve been looking for someone who is receiving exorbitantly expensive treatments for no good reason. Mr. Kramer explained his condition and treatments and, frankly, it all seems reasonable,” she replied.
“Ahhh,” I said, laughing out loud. “Let me get this straight: You have just interviewed a gentleman who has a uniformly lethal form of cancer that has already metastasized to his lung. He has been on a transplant list but has been removed because of the metastasis. His prognosis is poor. If I were still a hospice medical director, and Mr. Kramer wanted hospice care, I would sign him up for hospice care without hesitation. Instead, he is pursuing high-risk, quasi-experimental treatments at a cost of nearly $75,000 per year. And you have decided that you think what he is doing is reasonable! Right?”
She was taken aback and silent. But I wasn’t trying to be argumentative, so I continued.
“The fact is, I agree with you! What he is doing feels reasonable. All I can say is: welcome to my world. For what it’s worth, I think Aaron Kramer is an ideal person for you to interview. His story epitomizes many Americans’ experiences.”
The truth is that if you are seriously ill but can still enjoy the time you have left, and a treatment that isn’t all that toxic might help you live longer, why not try it?
On the other far end of the quality-of-life spectrum, if you are suffering terribly, endlessly, and there is an operation, a medical device, or a course of chemotherapy that offers real hope of greatly improving whatever life you have left— even if the treatment was dangerous and very expensive— it might seem worth the risk and costs.
And sometimes it is.
By all accounts Holly Block, a forty-three-year-old high school math teacher from Vermont, was the most loving, generous, and genuinely innocent person that people in her town ever knew. A petite, red-haired, freckled woman, she was dying from advanced cancer, but that was not the worst of her problems. A metastatic tumor pressing on her spine was causing “10 out of 10” pain and unrelenting suffering. Holly wasn’t writhing with pain; instead, she held herself stone stiff, like a terrified novice on a tightrope, because almost any motion might set off another lightning bolt in her spinal cord.
Hell for Holly was not beyond this life; she was living in it. High doses of IV pain medication and steroids made her more comfortable, but groggy and constipated. We raised the possibility of neurosurgery, which carried risks of permanent paralysis but real hope of comfort. The operation would not help her live longer, but it would likely make her life less awful and that, for Holly, was worth any risk and price. Her reasons were quite different from Aaron Kramer’s— he wanted life at any cost and she wanted relief, even if the cost was life— but in both cases the decisional landscape tilted in favor of treatment.
Dr. Perry Ball, a neurosurgeon at DHMC who specializes in spinal disorders, met Holly, studied her records and MRI, and agreed to consider the procedure. He is never eager to perform these operations. In spinal surgery of this nature, the nerve tracts that are being cut cannot be seen directly; their precise location can only be inferred from the surface anatomy of the spinal cord. Where to make a incision is a highly sophisticated estimation. Dr. Ball met with her and her husband and discussed the risks at length. He emphasized that this was a “destructive procedure” and that, unlike starting on a new medication, there is no way to undo the effects. There was a 5 to 10 percent chance of injuring motor nerves, rendering her unable to walk or even move her legs. There was about a 10 percent chance that the surgery would not alleviate her pain.
They listened carefully. Holly and her husband only had to consider the decision for a few minutes before announcing that they wanted to proceed— as soon as possible. She had surgery the following evening.
On rounds the morning after the four-hour operation, Holly smiled broadly as we entered her room. The deep “gnawing,” “boring” pain in her pelvis and burning in her perineum were gone. She could move her legs and feet, even if she couldn’t feel them. When I asked how she felt, she replied simply, “Safe at last.”
Holly’s predicament reveals the power of palliative care to apply sophisticated treatments, including highly technical procedures, in service of comfort and quality of life in our final months.
If only all decisions were sound and all outcomes were what people had hoped for. The result of Mrs. Maxwell’s many treatments was far from what anyone in her family wanted. And few people would want to die the way Mr. Stephen Rollins did.
Stephen Rollins was a seventy-one-year-old man with diabetes and severe congestive heart failure with related, secondary liver and kidney problems. He was hospitalized with deep vein thrombophlebitis, or new blood clots, in his legs. The Critical Care Service asked our team to become involved when Mr. Rollins’s blood pressure was dangerously low and he was requiring pressor medications in the ICU. The active coagulation that resulted in the clots had consumed all his clotting factors; therefore, paradoxically, he was now bleeding from any place on his body that he had had an IV or blood test taken.
Mr. Rollins had long been adamant that he wanted a heart transplant. When I met him, Mr. Rollins appeared ill. He said he was exhausted and sleepy from pain and anxiety medications. I asked him if he would impose any limits on treatments he was given at this time. Specifically, I asked him whether he wanted to have CPR performed if his heart stopped, and he said, “Yes!” After I dutifully explained that CPR would not likely work if his heart stopped beating effectively or his blood pressure couldn’t be kept high enough to circulate oxygen throughout his body, and he said, “Yes!” again, more loudly. His daughter who was present for our conversation and seemed annoyed by my questions, explained, “Steve Rollins doesn’t have quit in him.”
In listening to the story of his life, I quickly came to realize that this never-say-die attitude was a lifelong characteristic, part of the warp and woof of Steve Rollins. It had served him well through previous illnesses and hardships, including the death of his wife and a brother, and a fire that destroyed his business. He was a model of perseverance for many people who knew and loved him.
Mr. Rollins didn’t have quit in him, but his predicament was akin to someone in the pre– Wright brothers era whose efforts to fly were captured in those grainy, silent newsreels. Earnestly, courageously, they ran off cliffs or leapt from platforms, flapping the wings of devices that they hoped would keep them aloft, only to plummet to ground. For people with advanced, incurable conditions, mortality is a bit like gravity. Ultimately, it is the force majeure and will have its way with them, and us all. As a physician, in addition to helping people live as long and as well as possible, I can help people with advanced illness live with the fact of mortality and soften their final descent.
Sometimes, in situations of this sort, the most helpful and compassionate thing I can do is to say gently, but without equivocating, “I am sorry, but whatever we do at this point, you are dying.” Similarly, to the family of a seriously ill person, sometimes plainly stating, “Your father is dying,” can be a gift in the most difficult of times.
These are hard things for anyone to hear. Seasoned physicians know that news of this nature is best delivered when seated with the ill person or their family in a quiet and private place. It is not something to be said in a waiting room or hospital hallway.
Experienced physicians also know that a high degree of trust is needed for such a statement to be accepted. When I was growing up in the 1950s and 1960s, if a doctor said, “Your father is dying,” it was like nature itself had spoken. The doctor was not communicating a decision or even an opinion; he was simply stating a fact, making plain something that, from his technical expertise, he knew to be true. Despite the sadness it evoked, the unequivocal quality of the news allowed people to prepare for what lay ahead.
I am not nostalgic for this era of medical practice. At that time, “shared decision-making” happened when the doctor shared his decision with his patient. Still, I wish it were easier these days for physicians to shoulder more of the weight of decisions that can be crushing for patients and families to bear alone.
In America’s hospitals today, instead of being accepted as a statement of fact, a doctor saying “Your father is dying” can be heard by a family as an accusation. A physician who is not sensitive to the level of trust— or distrust— people have, or their readiness to accept such bitter truths, risks having his or her pronouncement challenged. At worst, the statement can be misconstrued as an unholy attempt to withhold expensive, lifesaving treatments. In this way, a doctor’s well-meaning attempt to lift a weight from people’s shoulders can backfire, destroying therapeutic trust with the very people he or she seeks to serve.
Trust is a rare commodity in health care today. Doctors tend to know their patients less long and less well than in earlier times. Today, there are myriad specialists and complex treatments to consider. And nearly every week, the headlines carry a story of someone whose life was saved by a treatment that did not exist a few years or even months ago, reinforcing hopes that with the right specialist and treatments at the right medical center, death can be forestalled.
Uncertainty underlies much of the stress and anxiety associated with making decisions about medical treatments. Even though death is dreaded, naming what is occurring as “dying” sweeps away uncertainty and places any pending decisions in a clear context. When a family is able to acknowledge that the person they love is dying, any family tensions regarding treatment decisions tend to dissolve. At such times, within a family’s inevitable sadness, it is often possible to detect a sense of relief.
I only make dire statements about an individual’s life expectancy when I am thoroughly confident that I am describing the person’s condition rather than opining about how long a person might live. When maximal disease treatments are becoming increasingly ineffectual and the person is approaching death, I may say, “Biology is taking the decisions we have been wrestling with out of all of our hands.”
I said words of that sort to Mrs. Maxwell’s family as she lay in the ICU dying from a series of strokes caused by emboli from an infected heart valve.
Being concrete and unequivocal can be a gift, but it is a gift that not all families are willing to accept. When a patient or family member cannot accept— or even acknowledge— that dying is happening, such counseling can fall flat. When someone is dying, certainty brings clarity, but also acute emotional pain. People may cling to uncertainty because it preserves hope for a longer life and prevents— or at least delays— the stabbing, searing pain of grief.
In what seems like a desperate attempt to avoid that pain, sometimes families interpret any greater-than-zero prognosis as good news. I have heard a doctor tell the family of a gravely ill ninety-two-year-old man who was in cardiogenic shock and being kept alive (barely) with a ventilator and intravenous pressors that there was less than a one in a hundred chance of him surviving. That was enough for his children and grandchildren who hoped for his recovery to instruct the doctor to press on. His son, who was nearly seventy, explained, “You don’t know my dad. He survived being shot down over Europe and a German prison camp. He can get through this, too.”
Doctors who push back, labeling such reasoning as unrealistic, may find that anger is the next defense against grief. Over many years, I learned this the hard way. “Who are you to render this opinion?” “What are your credentials?” “Why are you saying this and not the other specialists?”
The pointed questions were aimed at me but were intended to undermine not merely my credibility but certainty itself. The aggrieved individual may go elsewhere seeking a second, third, or fourth opinion with doctors in Boston, New York, or Rochester, Minnesota. Questing for the right specialists or hospitals can be savvy advocacy, but it can also be a way of keeping uncertainty alive into the future.
Without sufficient trust, I am left to listen, acknowledge the family’s concerns, and acknowledge the fact that nobody can know with absolute certainty how long a person will live. If they are willing to listen, I can offer to explain why I believe the person they love is dying. I can answer each and every question as fully as possible and offer to communicate with doctors of their choice in other centers. In my commitment to serve patients and their families, it seems the least I can do. At times, it is the most I can do— or rather, the most that a family will allow me to do.
Anger is a way of holding sadness at bay; the emotions are two sides of the same coin. Anger is energizing. When we are angry we look out, adopt a protective posture, and get ready for action. In contrast, sadness saps our energy. When sad, we look inward, become reflective, and are aware of our vulnerability. When someone is dying, becoming angry— with the disease or treatments, or the doctors and hospitals— may be what a grieving person needs to do for his or her own emotional well-being. Even if the anger is irrational, for a brief time it can be adaptive. Although it never feels good to be the target of a family member’s anger, when it happens to me I try not to take it personally. If being angry at me can temporarily help people with the pain of learning that they are dying, or that a father or mother, brother or sister, son or daughter is dying, so be it. But I certainly don’t relish their anger and I don’t want to add to any patient’s or family’s distress. So I try to convey the news as sensitively as I can, when people are able to hear it.
In Mr. Rollins’s case, our team and I never were able to develop much rapport with him or his family. I was unable to even offer to bear that load. In our consultation we described his and his family’s goals of care as “all treatments possible.” Within a day of meeting them, Mr. Rollins became too ill to engage in conversation and his family never perceived that there were decisions to be made. He developed acidosis from toxins building up in his bloodstream and was intubated and mechanically ventilated to maintain oxygenation. His hands were covered in padded cotton mittens to keep him from inadvertently dislodging his endotracheal tube and the IV tubing and wires connecting him to medication pumps and monitors. After his blood pressure dropped, despite maximal doses of pressor medications, he developed electromechanical dissociation— signifying that there were electrical waves on the EKG (electrocardiogram) monitor but no pulse or effective contractions of his heart. CPR was briefly performed and he was pronounced dead.
Steve Rollins never quit and never said die, but mortality still had its way.
Three weeks after he died, I received a handwritten note from Mr. Rollins’s daughter. She said that she felt her father got good care, but only because they had pushed for it. She wrote that I had been heavy-handed in pressuring him to make decisions to die against his will. [66-93]
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