Any doctor is going to say it is possible. They might qualify [by saying that] there is a very slim chance. As a physician, I know what that means, but I wanted to believe in a chance. The rest of my family felt if there was a possibility, we should keep Dad alive and give him time to recover.
Days passed, maybe a week or two, and he ended up requiring a feeding tube. I know as an oncologist and as someone who deals with people who are very sick that a feeding tube is often one of the last things that is going to happen.
My family decided they wanted to keep him going. He was even on a ventilator for most of this recovery period, and they talked about placing a tracheostomy tube for the ventilator. I was gently advising them to consider not doing those things, but I was overruled by them, and maybe sort of overruled by my own heart and optimism.
The feeding tube led to unexplained bleeding, and he ended up again getting many units of blood. Then the family eventually came around to facing reality and we let him go.
What is interesting about the whole experience to me is that, as much as I felt like I had the expertise to provide guidance and judgment to my family, I found myself wanting to believe, wanting to be optimistic.
Matt found his father was stripped of his identity during his prolonged hospitalization and ICU stay.
Culturally, we do not view death with the dignity and honor it deserves. I think we view death as a failure. There is something dehumanizing about the way ICUs and hospital rooms look. People in the ICU are wearing a ridiculous piece of fabric tied around their necks. They have tubes in their arms and are connected to a machine. Their heart is a beep on a monitor. They have no dignity. We treat them like a science experiment. If that person was in their bedroom and we walked in and they were wearing their finery, or at least their own clothes, and were surrounded by their family, we would treat them differently. People have recognized for a long time that medicine/medical care is not dignified. Do we do that to patients intentionally so that we can do undignified things and feel okay about them? I don’t know. As a society, we should honor and prepare for death so that we can die with dignity.
Matt’s friendship has helped me navigate the loss of my younger sister, and I believe I’ve been able to help him weather the impact of losing his father. As I learned in our conversations and discovered again and again through my interviews with other physician colleagues, each of us has experienced painful losses; armor-piercing moments full of doubt, dread, failure, or overwhelming sadness. We tend not to share them with each other, but keep them to ourselves, soldiering on, seeing one more patient, working one more hour, avoiding the quiet moments when grief presents itself.
GUS MAGRINAT
Gustav “Gus” Magrinat is an oncologist with Cone Health’s breast cancer program. He came to the United States from Cuba in 1961, attended high school in Saint Louis, and graduated from Harvard University with a degree in English literature. He was a social worker for two years, then pursued a career as a freelance writer until he decided to go to medical school. Two decades after finishing college, Gus graduated from the University of North Carolina School of Medicine, completed his residency in internal medicine, and did a hematology and oncology fellowship at Duke. He has practiced in Greensboro since 1993. Ever-curious, he also earned a master’s degree in pastoral studies from Loyola University in 2004.
Gus is slightly built, soft-spoken, calm—always seemingly at peace. He approaches people with curiosity and attention, often with a twinkle in his eye. Never seeming distracted or judgmental, he is completely focused in conversation. He is passionate about his patients; his wife Mary and their son and grandson; social justice; religion and philosophy; and the outdoors.
I knew that Mary Magrinat had breast cancer many years earlier and I wanted to understand what it had been like for Gus and Mary to go through that as a couple, as well as how the experience affected him as an oncologist specializing in breast cancer. When we spoke, Gus had recently lost his father and mother and had to make difficult choices about withdrawing care. How was it that he was always so serene and accepting? I wanted to know how his religious beliefs informed his patient care and his thoughts about dying. I was eager to learn his perspectives and hoped, in the wake of Victoria’s death, that some of his calm and acceptance would rub off on me.
After college, Gus spent time as a social worker in Bird S. Coler Hospital, a New York hospital for chronic diseases. This was when he first came face-to-face with disability and death. He was outraged by what he saw: patients were sent there to be housed and to die.
I can remember my reactions, so I understand other people’s reactions when they come across death for the first time. Basically, we grow up thinking that we will live forever and everybody else will live forever, and that a few people die, but that is their problem and that is their fault. I am not going to die. And then, at some point, you understand that this is happening, that it is real, and that it is going to happen to you someday. When it does, then one’s life trajectory changes.
In A River Runs through It, Norman Maclean writes about the way a river runs. People think a river runs straight down. And that is not how a river runs. It runs one way until it hits a rock, and then it runs another way until it hits another rock. So, a river hits rocks and changes course. And that really is how life is.
I use this image when I talk to my patients, and they often find that fits their experience. They are not going crazy; it’s normal. They have just hit a rock, and they cannot go in the old direction anymore. They have their marriage and their lives and their kids. They have to get back to that, but it is not going to be the same. Nothing is going to be the same. They are heading in this direction now, and eventually they will hit another rock, and then change. And, eventually, they will arrive at the ocean.
This brief experience in social work profoundly affected him, though it was many years before he decided to go to medical school.
I ended up in oncology. Nobody had signed up for the oncology rotation, which was supposed to be depressing, so they put me on that service. I think oncology is the very best of medicine. You have great relationships with the patients. You don’t have to convince them to quit smoking or not to eat so many carbohydrates or exercise. They want to become vegans! They are very motivated. They want to learn. You get to meet the family. Everybody is involved. You become part of that…. You have these long wonderful relationships that have great intensity. In oncology, the patient-doctor relationship is the best there is in medicine—that’s my view!
At the same time, the science is absolutely fascinating. It is basic cell biology, you know. So, great stuff on both sides, and that worked for me. I kind of fell into it by accident, I suppose. But I love what I do.
He believes it is part of his job to help a patient die in the best way he or she can, with the least suffering and the most awareness: “the best forward-looking plans.” And when this happens, he tells me, he doesn’t feel bad. “I miss them, I like them, I love them, I feel close to them, but if I have been able to help them through the death they have, I feel very positive about that.”
Gus observes that many patients want to avoid talking about death and traces this back to cultural priorities. “What our society sells is sex and food and pleasure and youth. It doesn’t sell death and suffering and darkness and depression. Sex and food is what’s out there, and that’s what people consume. Is that healthy? I don’t know. I don’t know how it is in any other society. This is the one that we live in.
“We need a more practical—a more realistic—understanding of death, because if not, then it gets very expensive and resources are wasted. Our pharmaceutical and healthcare leaders, our political leaders, are clueless.”
Families, too, play a major role in coping with an illness.
Most of the time this is straightforward: What can we do to help? What is our role? A special issue has to do with family members who live far away or have been estranged. They feel a need to demonstrate lov
e and concern, and sometimes they do this by challenging the doctor’s motivations or recommendations. The best response in my experience is not to become defensive, but to say “I can tell you really love your relative.” That is the point they are trying to make. Usually we can move on from there. In most cases, though, family members just need direction. The goal is for the patient to be safe, comfortable, and able to make their own decisions until the end. Most families do a terrific job with that.
After a patient dies I will frequently send a note to the primary caregiver. This is an opportunity to praise the patient for his or her courage or faith or consideration of others, but also to mention the incredible amount of work the family did in the last few months of the patient’s life. So many people have a feeling of guilt, thinking they perhaps did not do enough. Most of them have done a truly heroic job. Mentioning their self-sacrifice I think is helpful as they move on to grief and, eventually, comforting memories of the one they lost.
He does not see a great difference when treating cases where there are physicians in the patient’s family, other than it “means that I have to be on my toes. These are people who are going to be able to get nuances, so I had better know what I’m talking about. Not just the gross picture but also minute facts. Otherwise, they lose confidence. That’s really the only difference. Otherwise, they are just people.”
I spoke with Gus about Mary’s illness and how it affected them both, though he readily admits it had a far more profound effect on Mary. “By the time she got sick, I was in medical school. I had already experienced death and dying. My concern was to care for her, to make sure that she was okay. I was expecting her not to die. She expected that she would die, but I did not expect her to, so I never had the feeling, Oh my gosh, she is going to die. It was difficult for both of us. The main thing was we could not have more kids … but you know, that’s life.”
His father and his mother both had advanced dementia when they died.
I did not prolong their dying process. I did not interrupt it. My father died from a urinary tract infection that we did not treat, and he became septic and died. He probably had prostate cancer, but we never worked it up. He had terrible dementia. He was in a nursing home. His second wife, whom I love, couldn’t really take care of him anymore. There was no life there. I mean, when I visited him, he thought I was a thief. It was dreadful.
When they called to ask my advice, I said absolutely not, do not give him an antibiotic. In the end, they gave him some, but it was too late. He died in the nursing home within two days. He was unconscious [that entire time].
My mom stopped eating. She was also totally demented. When you put a spoon in her mouth, she bit it. She stopped eating, so she died of dehydration. I could have given her IV fluids or done some intervention, but what would that have accomplished?
I don’t think either of them suffered. But the emotional part is separate from that. The actual, physical process of dying is not a big deal. The emotional part is a huge deal.
His parents’ deaths also increased Gus’s sensitivity to the suffering of his patients and of their families by adding a personal experience of their circumstances. “You have a better idea of what they are going through. You understand why they are crying nine months later and longer than that.”
I asked him if he thought he would make different choices for himself as a patient with a terminal illness than he would recommend to others.
It’s very hard to know. I know that if I was suddenly diagnosed with pancreatic cancer, I would feel very vulnerable. I wouldn’t feel neutral about it. It would be like getting hit in the gut with a baseball bat.
I realize that it would be a major issue no matter how much I’ve prepared myself, but then, would I take some Gemzar even though it really doesn’t work well? Probably, I would. I would give it a shot. I don’t think I would be very interested in things that prolong life at terrific cost in quality of life. I think it would be a reasonably quick transition, so I just would want to be comfortable.
Let’s make sure I’m comfortable. If the drugs that make me comfortable hasten my death, then that’s okay, too. I think I would be kind of like my patients, but a little less hopeful because I know the odds. I know the statistics in a different way than my patients do. I’ve provided the statistics to each of them, but I have seen the numbers play out more often than they have. So, I feel a difference.
There’s always hope. So the motto of hospice is: No one should die alone. No one should die in pain, and no one should die without hope. Yes, there’s always hope. The day before you die, there’s hope … But it is a different experience when you are the one who is in the process of dying.
Gus has clear ideas of how we should improve the delivery of medical care in the US but says that under the present system, his obligation is to his patient rather than to ration resources for the greater economic good.
I’m prescribing drugs that cost $3,000 to $10,000 a month that my patients have to buy at the pharmacy. I think we need a system of rational rationing. Then everybody will get what they need up to a point. Beyond that point, they won’t. But do you want to run on that platform?
If I feel treatment is futile, I say, “You know, I really think it’s futile. You could try it, but I wouldn’t. It’s got side effects. It’s not going to make you live longer. You’re going to die just the same. It may make things worse, and in the meanwhile, you’re not doing what you really need to be doing.” I don’t feel that I’m obligated to prescribe something just because it is out there on the market.
I’m very clear that my job is to treat the patient, not to solve the general problem of medicine in the United States. Whatever I can do that will help this patient, even if it is incredibly expensive, which it is, I will do. The cost of cancer drugs is ridiculous.
A cost of $50,000 to $150,000 a year is not uncommon for cancer treatment, and radiation alone is $50,000 or more for six weeks. I mean, it’s ridiculous. The point is, if it will help my patient, my society says it’s okay, so that is what I do.
Gus’s religious background has strongly informed his medical practice. Brought up a Catholic, he left the church in his teens, became a conscientious objector during the Vietnam War, and later joined a Quaker Meeting in Greensboro, attending for many years. That was where Mary and he met, and they were married in care of that Meeting. When Mary’s brother Eddie died at age twenty-four in a car accident, they returned to the Catholic church, where she felt more at home. “By then Vatican II was transforming Catholicism. My feeling now is that there is no perfect church. Catholicism is as good as any of the major traditions, and it has a very sane understanding of science. It’s the one I know best—I completed a master’s in pastoral studies through Loyola—but I could be Lutheran or Methodist or Jewish. I don’t know enough about Islam. I do think there are truths, like the value of every human life, that are not scientific or political. That’s the great value of religion.”
Victoria showed a growing sense of gratitude as her illness progressed, and I asked Gus if he had witnessed something similar—and if he himself approaches the idea of death this way, as he seems to exude gratitude and calm. He has thought a lot about this and about how his religious views intersect with his sense of his own mortality.
How do people react to death in general? And their own death? I think most people do not want to face death, so they don’t.
In the Judeo-Christian religions, although apparently there will be no sex in heaven, people are going to feel really good, and everybody is going to be there. We have this hope that everything is going to be wonderful. A lot of people jump from “Oh, I just got lung cancer stage IV” to “Boom! I am going to be in a great banquet with all my friends and family. It is going to be terrific.” But there is a process to go through to get there.
Most people don’t face the reality of death. Those who do and [who] live long enough to experience the suffering that is involved react in different ways.
I a
m amazed at how many people make a positive out of it. They hate to be dependent on others, but they accept it like it’s a job. They conclude, “It is my job to suffer, to be a patient, someone others must take care of.”
They become grateful for little things. I do not know exactly how it works, but it is not that uncommon. It is a wonderful response. They do not respond like victims, although some people do think of themselves as victims and feel angry and can’t accept what’s happened.
While I don’t share Gus’s religious views of an eternal life (nor did my sister), he doesn’t impose his beliefs on others but uses them as an internal guide. He is sincerely interested in his patients’ perspectives and works within their belief systems in terms of providing explanations of therapies, expectations of an illness, or transitioning to hospice care. Driven by empathy, he bases his discussions with patients on his understanding of their desire for information rather than on his need to explain things to them. Patient viewpoints are important to him, and always welcome, though he does express limits: when patients push homeopathic or alternative therapies, he redirects them toward biologically based therapies. He doesn’t refuse to allow alternatives but makes clear that he has no knowledge of their efficacy and that they don’t play a role in the standard treatments for cancer at this time.
After speaking with Gus, I realized that as a physician I am also comfortable tailoring explanations to patients based on my understanding of their desire for detail and honesty. Gus has developed perspective on his patients’ illnesses and the limits of his ability to cure them. He is comfortable working from what he perceives to be their need for explanations, going to great lengths to make sure patient and doctor understand each other. I also saw, in our conversation, that the essential distance dissolves when someone close is mortally ill. And, just as Gus did, I learned that emotional complications arise when we attempt to simultaneously play the roles of doctor and family member.
Grief Connects Us Page 14