A Life Worth Living: A Doctor's Reflections on Illness in a High-Tech Era
240
A Life Worth Living: A Doctor's Reflections on Illness in a High-Tech Era
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Overview
Critical illness is a fact of life. Even those of us who enjoy decades of good health are touched by it eventually, either in our own lives or in those of our loved ones. And when this happens, we grapple with serious and often confusing choices about how best to live with our afflictions.
A Life Worth Living is a book for people facing these difficult decisions. Robert Martensen, a physician, historian, and ethicist, draws on decades of experience with patients and friends to explore the life cycle of serious illness, from diagnosis to end of life. He connects personal stories with reflections upon mortality, human agency, and the value of "cutting-edge" technology in caring for the critically ill. Timely questions emerge: To what extent should efforts to extend human life be made? What is the value of nontraditional medical treatment? How has the American health-care system affected treatment of the critically ill? And finally, what are our doctors' responsibilities to us as patients, and where do those responsibilities end? Using poignant case studies, Martensen demonstrates how we and our loved ones can maintain dignity and resilience in the face of life's most daunting circumstances.
Product Details
| ISBN-13: | 9781429996181 |
|---|---|
| Publisher: | Farrar, Straus and Giroux |
| Publication date: | 09/02/2008 |
| Sold by: | Macmillan |
| Format: | eBook |
| Pages: | 240 |
| File size: | 238 KB |
About the Author
A physician, historian, and bioethicist, Robert Martensen has held several professorships. Recently, he joined the National Institutes of Health as director of its Office of History and Museum. In 2002 he received a Guggenheim Fellowship.
A physician, historian, and bioethicist, Robert Martensen has held several professorships. Recently he joined the National Institutes of Health as director of its Office of History and Museum. In 2002 he received a Guggenheim Fellowship.
Read an Excerpt
A Life Worth Living
A Doctor's Reflections on Illness in a High-Tech Era
By Robert Martensen
Farrar, Straus and Giroux
Copyright © 2008 Robert MartensenAll rights reserved.
ISBN: 978-1-4299-9618-1
CHAPTER 1
Trials of the Body
In my experience, most people with something worrisome about their health seek out doctors because they want to know the truth, even when it hurts. Then they want the best available treatment. For decades, patients who follow recommended treatment regimes have been called "compliant" among doctors and nurses. The Oxford English Dictionary gives one definition of comply as "bending to the will of others." But when it comes to living with a life-threatening disease that admits of no cure but many treatment options, what role does "bending" play for both patients and doctors? What does compliance mean when all of us live within a biomedical -industrial complex that has its own values, assumptions, and interests to promote? Though any one of us within "the system" may strive to behave with candor and mindful compassion toward everyone, including ourselves, does "the system" encourage either?
This chapter tells the story of a woman who discovered when she was forty that she had advanced breast cancer. But the challenges she faced are similar to those contemplating aggressive treatments for other life-threatening diagnoses, such as advanced cardiovascular disease and degenerative conditions of the nervous system.
MARGUERITE AND THE PILGRIM HOSPITAL, BOSTON
In ERs, doctors and patients ordinarily meet as strangers. I was a little surprised, therefore, one Sunday morning in Boston in the mid-1990s, when I got a telephone call at home from a new neighbor asking if I would see her when I next worked in the ER at the Pilgrim, one of Harvard's principal teaching hospitals. I had met Marguerite and her husband, Eduardo, at a welcoming party another neighbor gave for them. It turned out she was the younger sister of a college classmate with whom I'd stayed in touch. Perhaps it was the connection through her older brother, my college friend Hugh, that prompted her to call me that Sunday. On the telephone she said she had been "putting something off" and wondered if I would "check her out." She and Eduardo had been traveling — around the world, in fact — with their six children, and then with their move from Guadalajara and all, she had just been "too busy." I suggested that perhaps she might be better served by seeing a regular doctor, one with whom she could have an ongoing relationship. I'd be happy to give her referrals to excellent physicians ... No, she wanted to see me. It was "probably nothing," but she did not want to wait for an appointment with "a strange doctor." "That could take weeks." I was on duty starting at three that afternoon. I told Marguerite the ER would likely be busy, but she was more than welcome to come in and that I would be sure to see her if she did.
Like her brother, Hugh, Marguerite was tall, large-framed, and sturdy. He had been a standout hockey player at Harvard; Marguerite captained her field hockey team at Smith. Still a vigorous athlete at forty, she said she did not pay much attention to bruises or other "minor stuff." Then she laughed, remembering when, the year before, her ten-year-old son accidentally landed on her foot during a family basketball game and she waited two days before checking out her soreness and finding out a bone was broken. Other than having had a lot of kids, which she and Eduardo started to do in their early twenties, and a couple of broken bones from sports, she said she had never needed a doctor in her life. And she'd delivered her babies the "natural childbirth way." "It was pretty easy!" As she told me these details, I had a better sense of why she had waited to see someone about soreness in her left breast, which had been going on for about three months. I wish she had not waited.
A patch of skin about an inch and a half in diameter on the lower outer quadrant of Marguerite's left breast was red and bore little ridges. It felt warm to my touch. Because it was tender, I palpated very gently; nonetheless, it was easy to feel a hardened irregular mass about an inch in diameter below the redness. The mass seemed fixed to her chest wall. Her other breast seemed normal, and I could find nothing out of the ordinary on the rest of her exam, including her lymph nodes. I had seen and felt enough, though. Her breast's surface patch of roughened and tender redness, coupled with the firm mass below it and the fact that the soreness had been going on for at least three months, pointed strongly to one of the worst diagnoses one can have: inflammatory breast cancer.
I thought that I could be wrong — it could just be a breast infection, a mastitis with an abscess. But I didn't really believe that, even as I thought it; I just wanted the likely truth to be different. One might assume — at least nonmedical friends have told me they assume — that those of us who work in ERs over time must become "hardened" or "jaded" by what we do. But when it comes to realizing that the patient before you likely has some dreadful condition of which she is unaware, I have found that assumption to be a myth for me and for many of the veteran nurses, doctors, and technicians with whom I have worked. Our emotional range, if I may speak for them and me, has grown with our age and experience, not diminished. In the moments that lapse between suspecting something very bad and delivering the news, the cliché about feeling one's heart sink comes close to a visceral reality. And the sinking usually happens whether or not I know — or even like — the patient.
Marguerite sensed the change in me as it happened. "What do you see? You think it's bad, don't you?" she blurted out as I palpated her breast. I demurred and said I'd like to complete her exam and then talk about what might be going on. When I finished and she rearranged her gown, she wanted Eduardo, who had been waiting outside the cubicle, to come in. They had been together since she was sixteen: "We're a team in everything!"
I told them what I knew and feared. The fact that her left breast's reddened patch was warm and ridged — the cancer literature terms it peau d'orange for its resemblance to the peel of a navel orange — was a worrisome sign. The underlying mass was not especially large, which was good, but it was not small, and its hardness and fixedness made me concerned. Although all of it could just be an infection that would respond to antibiotics, I said it would be a mistake to treat it as such. We should arrange for her to see a breast cancer specialist as soon as possible; right now, in fact, if we could find one on a Sunday. I would make some calls. Marguerite and Eduardo sat on the exam table and held hands as I talked. Then they hugged and cried and I supplied Kleenex and said I was so sorry.
We spent a few more minutes together that day. I was able to locate an excellent specialist who would see Marguerite the next day, which she appreciated. She and Eduardo decided not to bring it up with their children, who ranged in age from eight to eighteen, until they knew more, which I thought was wise.
They both talked about God, about how much they believed in Him. I had assumed Marguerite was Catholic because I knew her brother was and that Eduardo was Mexican by birth. What I only learned on Sunday was that unlike her brother, who limited his regular church attendance to Christmas and Easter services, Marguerite and Eduardo's faith ordered their lives. They had taken their children around the world with them, for instance, because they decided as a family to devote a year to doing relief work for charities. Neither of them needed to earn a living — ample trust funds on both sides had taken care of that. They elected early on as a couple to devote their energies and resources to making a difference for the poor. For Marguerite this meant using her training in anthropology; for Eduardo, his own in civil engineering. They had first worked for CARE and Oxfam, and now they worked for Catholic charities. It had been a wonderful life for them and their children so far — "a grand adventure." Now they were back in New England, the home of her mother's people, to get some additional training in their respective areas and for their younger children's schooling. So far, God had been with them every step of the way. "On my shoulder — always," Marguerite said. She said it so lightly, so easily, and I was happy for her in this. Upon leaving, they said they wanted to stay in touch and would call me in a few days.
A week or so later Eduardo phoned with the news: biopsy had confirmed the existence of an inflammatory breast cancer. Due to scheduling issues, it turned out Marguerite would be working with a different cancer specialist from the one we originally called. This new faculty member had been recruited from the National Cancer Institute for her adeptness in devising sophisticated clinical protocols for treating breast cancer. Eduardo said Marguerite took to her "at once," and they were grateful to be in the hands of someone so brilliant and up-to-date. It had been "quite a week" for them all, he went on, as he and Marguerite had talked about her situation with each of their children individually and also as a family. "Tears and prayers in abundance."
Marguerite's situation had been discussed with the Pilgrim's Tumor Board, a multispecialty conclave composed of oncologists, cancer surgeons, and radiation oncologists that meets weekly to make treatment recommendations for new and ongoing patients. The Tumor Board recommended, and Marguerite and Eduardo readily accepted, an aggressive approach. Because inflammatory breast carcinoma tends to spread early and wide, she would have a modified radical mastectomy of her left breast and a simple mastectomy of her right — unless, of course, the surgeons found something worrisome in her right breast, in which case they might do a modified radical there, too. Then, after she had recovered from the surgery, they recommended radiation for her regional lymph nodes and at least three rounds of new chemotherapeutic agents. All this would take many months. Marguerite was going into the hospital tomorrow afternoon, and her surgery was scheduled for the next morning.
"How is she doing?" I asked Eduardo.
"Marguerite is amazing, just amazing!" he responded, getting choked up. "I don't know where she finds her strength." And the priests and sisters at their church and children's school had been "wonderful." Marguerite was with their children just then, but he wanted me to know how much she appreciated my examining her that Sunday. He also asked if I would stop by and see her in the hospital after the surgery. He said Marguerite's mother and sister were coming to stay with them and help out. Eduardo closed with, "We're going to lick this thing!"
As he talked, and especially after this closing declaration, I wanted to say and ask many things, but I did not. Early in my ER career I decided I would not press my medical opinions on people who did not request them. If Marguerite and Eduardo wanted to know what I thought, one or both would ask, either directly or in a way that suggested they wanted my input. But they had not; they were content with their choices. My job, if I had one, involved being supportive; at most, I could serve as their cicerone to the labyrinth of our complicated hospital, but even that would require a hint from them. To do otherwise, I told myself, to attempt to insert myself into their intimate life, would be disrespectful. The last thing they needed was for me or any outsider to sow doubt. After all, Marguerite had been my patient for only a moment, I was no cancer expert, and they were getting the best of care.
Even so, Eduardo's closing declaration — "We're going to lick this thing!" — disquieted me. As soon as he said it, I wondered how their cancer team had presented Marguerite's disease and treatment options to her. Did they — and this was crucial — present their proposed regimen of surgery, radiation, and multiple rounds of chemotherapy, experimental in this case, as likely to be curative or even as giving her a reasonable chance at a cure? Or did they say, as I thought they should, that they would recommend everything they could think of to make her remaining life as symptom-free as possible but that nothing would be likely to cure her or significantly lengthen her survival? I could not tell from Eduardo's comment. He may, like so many in similar situations, have been giving voice to his and his mate's hopes. Her physicians may have spoken with them about her likely course and expected length of survival in detail, or in brief, or left the subject in the air. But if Eduardo's optimism sprang from what he and Marguerite had been told by her team, then I felt the team was doing her a disservice.
Advanced invasive breast cancer, like most other advanced invasive solid cancers, is a terminal diagnosis. One may live for several years with many terminal diseases, including some advanced cancers, and these may be years of satisfying quality, but the underlying diseases eventually exact mortal tolls. One does not "lick" or "win the battle against" such a diagnosis so much as cultivate resilience in its presence. Tragically, Marguerite's variety, an inflammatory glandular cancer, typically exacts its toll sooner rather than later.
This is an empirical truth. Should they not have told her that? Or, to put matters another way, should they have implied or even hinted otherwise? That I even raise the question may distress you. One may feel that doctors ought to nurture hopes of cure in patients, especially patients with advanced cancer, regardless of their likely outcome. What else can these patients cling to if not hope of a cure or years of symptom-free remission?
During the next few months, Marguerite fared well. The fact that she was comparatively young — forty — did not bode well for her long-term survival, as breast cancers in women under forty tend to be more aggressive than in those who are older, but her comparative youth and high level of fitness, spunk, and general health made her recovery go swimmingly. There were no significant problems from the excision of her left chest-wall muscles and the lymph nodes in her left armpit and over her collarbone, and only mild fatigue from the regional radiation. Indeed, the next time I really spent time with her and Eduardo was when we were swimming — Marguerite mostly floating on a raft — with their children over a perfect summer weekend at her family's place up on Squam Lake in New Hampshire. Her brother, Hugh, was there, with his wife and children, too, which afforded a nice reunion for him and me.
Following church and a lively Sunday lunch, Marguerite invited me to go on a walk with her. She wanted to show me something. After ambling along a woodland path for perhaps five minutes, we entered a circular clearing. Around its edge grew fourteen more or less evenly spaced old-growth white pines. As we slowly made our way around the circle in their dappled shade, Marguerite explained that they were her "Stations of the Cross." Her great-grandparents had first noticed the circular configuration of the giant trees and cleared the circle between them early in the twentieth century. She said she could find peace in many places and moments, but she found it most easily here. All winter long, as she experienced the surgery and rehabilitation and then radiation, she took comfort in her memories of this place and looked forward to returning. And now she had, and said she felt blessed. She also told me she did not fear death, that she knew God would keep her close in whatever state she was. She was about to start chemotherapy — an experimental protocol — and her doctors were optimistic for her. Before we walked back, she thanked me again for seeing her that Sunday and for "being there" for her and Eduardo. For a person as vivacious and engaged as she was in the life of the world, Marguerite then said something truly extraordinary. Looking at me with her widely spaced brown eyes, she said that if she ever became widowed from Eduardo, which she doubted, and their children were grown, she planned to enter a convent, a cloistered one whose members devoted themselves to contemplation and prayer.
(Continues...)
Excerpted from A Life Worth Living by Robert Martensen. Copyright © 2008 Robert Martensen. Excerpted by permission of Farrar, Straus and Giroux.
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Table of Contents
Contents
Title Page,Preface,
1 - Trials of the Body,
2 - Less-Traveled Paths,
3 - Illusions of Control,
4 - Elective Choices,
5 - Reflections on the Plight of Sick Children,
6 - If This Is a Person,
7 - Life in the Narrows,
8 - As Night Draws Nigh,
ALSO BY ROBERT MARTENSEN,
Notes and Sources,
Acknowledgments,
Index,
Copyright Page,