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India Currents gave me a voice in days I was very lost. Having my articles selected for publishing was very validating – Shailaja Dixit, Executive Director, Narika, Fremont
Writer Sunita Puri, a doctor and writer, uncovers the role of the doctor when families need medical care and advice the most – at the time when they seek palliative care for loved ones. Issues surrounding healthcare delivery are being discussed every day and Dr. Sunita Puri’s first person account is thought-provoking and raises pertinent questions that all of us need to confront – patient, family members, doctors, healthcare executives and hospital administrators.
How do we want to live and how do we want to be treated when options are exhausted? A taboo subject that forces us to consider personal decisions that affect the public sphere. Here is an interview with Sunita Puri on her book – That Good Night, Life And Medicine in the Eleventh Hour
Q: Palliative medicine is a newer subspecialty of medicine that focuses on treating the suffering of patients and families facing a serious illness. What initially drew you to this field ad when did you know you wanted to be a palliative care doctor?
SP: If you’d told me at the beginning of medical school that I’d end up practicing hospice and palliative medicine, I would have looked at you blankly and asked you what those words mean. And once you explained, I would have told you there was no way I’d put myself through medical school only to care for patients I couldn’t cure. When I was in medical school, my preoccupation with studying and treating the body often blinded me to my patients’ very human needs and concerns, particularly when they suffered from advanced and terminal illnesses. And yet the times I felt the most like the doctor I wanted to be were the times when I sat with a patient I knew I would lose in the coming weeks or months, and focused my attention on addressing their physical and emotional suffering. In palliative medicine, I get to guide patients and families through the hardest yet most universal transition we will all face, and I get to help make that experience as comfortable and dignified as possible. We will lose the people we love. There are no do-overs. And there is no greater privilege in medicine than to make that loss peaceful and humane.
Q: This is the first book written by an American palliative care physician that, in a very personal way, reveals what it actually means to have discussions about a patient’s goals and values at the end of their lives. Can you describe how you, as a medical doctor, learned to have these sensitive conversations that often veer into complex emotions and spiritual beliefs? Why is open and honest communication about dignity and suffering—with patients and with their families—so important?
SP: Clear, compassionate communication is the cornerstone of the relationship between doctors and patients. Although I worked hard in medical school to learn to diagnose and treat an array of ailments, I didn’t learn what might seem basic: how to tell a patient that they have a life-threatening diagnosis, how to talk with them about what quality of life they value if time is short, and how to discuss the best way to care for them when a cure isn’t possible. I was drawn to the architecture and impact of conversations with very sick patients because I witnessed the way that words—our oldest, non-technological tools—can comfort and heal. In palliative medicine, words are my instrument, and conversations are my procedure. My practice requires fluency in the language of scientific medicine as well as the language of the spirit. As human beings, we all share a common focus on maintaining our dignity even amidst unimaginable suffering. Though it may seem unusual for a physician to use these words, this is the vocabulary that most of my patients have been waiting to hear and to use.
Q: Medical care in our country is suffering from severe depersonalization. You write that doctors are taught to treat patients “like a panoply of diagnoses, biological mysteries to be solved.” What can the profession of medicine learn from the principles of palliative medicine?
SP: Medicine is a deeply humanistic profession, but our health care system doesn’t always allow physicians to spend the time we need to care for patients as fully as we’d like. Palliative medicine focuses on the many ways that patients experience suffering—physically, emotionally, spiritually, and existentially—and seeks to improve patients’ quality of life and well-being by getting to know them as human beings. But in order to do this well, I need the luxury of time with my patients, and I’m very lucky to be able to spend an hour or two at a time with them if necessary. What surprises me is that our health care system supports this time investment when a patient has an advanced illness, but not always before then, when it might actually assist in preventing some of the untimely deaths I have witnessed in my career.
I think medicine could be profoundly transformed if the principles of palliative medicine—a focus on controlling bothersome symptoms, and on having careful conversations about what matters most to a patient—became part of everyday medical practice. But this would require a parallel cultural change in our health care system and in its financing. Patients shouldn’t need to have a bad diagnosis in order to benefit from the compassionate, humanistic approach to care that we provide in palliative medicine.
Q: You seem to live between multiple worlds – as the daughter of immigrant parents, as a doctor, and as a writer. How do you navigate each, and what inspired you to turn your experiences into a book?
SP: Though I’m very proud of being a blend both of cultures and professions, being a citizen of several different worlds hasn’t always been easy. Being a more artistically inclined physician always made me feel like a bit of a freak; if I was always thinking about writing essays and stories rather than doing research projects, was I really supposed to be a doctor? Similarly, as a teenager and young adult, I wondered if I was ‘Indian’ enough, and fretted over whether I stayed true enough to the culture and heritage with which I’d been raised. But I’ve come to see that we are each a patchwork of different identities, and how we navigate the tension between them is what makes each of us unique. I began to ask myself why I thought a doctor shouldn’t write, or what it meant to be ‘Indian enough.’ For me, writing and reading have been ways to find company during the often isolating experience of figuring out who I really am and what I’m meant to do, both in the hospital and in my wider life. And the writing of the book was very much about discovering, on the page, the many facets of myself, the way that they shape each other, and how they collectively came to influence who I’ve become.
For this reason, the book is as much about my parents and my heritage as it is about medicine. It’s as much about my love for language and my puzzling, yet very human, inability to apply it in my early medical training. It’s about discovering how mortality did and didn’t scare me, and how being a doctor helped me to learn important spiritual lessons of acceptance and surrender, alongside my patients. Because all of these things live in me, and the writing of the book was a way to place them side by side and find the universal human experiences in my particular journey. Though the writing of the book was often painful and deeply emotional, as Cheryl Strayed has said, not writing the book became harder than writing the book. It is, as Strayed has also said, the story I was meant to tell.
Q: Many patients turn to spirituality for solace when faced with an advanced illness. But many physicians struggle to discuss spirituality with patients, given that this is a highly personal and sensitive matter. Can you talk about how your upbringing taught you to embrace life’s temporality, and how that helps you to navigate conversations about spirituality with patients?
SP: I was only five years old when my father—a deeply philosophical man—first told me that life is temporary, and beautiful in part because it is temporary. Much of our suffering in life, he said, stems from an inability to accept the fact that life is both finite and constantly changing. He and my mother spoke openly of the suffering they endured as children living in poverty in India, and how they were able to transcend it through prayer and through remembering that everything in life, both our joys and sorrows, is fleeting and impermanent. Though we talked about such profound truths when I was very young, it wasn’t until I was in my residency training and taking care of patients facing the end of their lives that I began to understand just how many spiritual questions the experience of illness can pose. And although my parents shared mostly Hindu and Buddhist teachings, they taught me that every spiritual tradition recognizes and respects life’s temporality, and the suffering we all endure, in different ways.
I am always careful to ask patients how they define their own sense of spirituality, but often find that even patients who consider themselves atheist or not particularly spiritual struggle with the meaning of their existence and their suffering. Being able to help patients talk openly about these very personal matters, simply by normalizing and acknowledging their illness, can spark deeply spiritual and existential questions. These conversations also help me to be a better doctor to them. I have a clearer sense of the interconnectedness between their spiritual pain and physical pain, and can treat both more fully.
Q: 25% of Medicare spending is on costs related to care in the last six months of life. Based on your own experiences, why do you think this is the case? What is the thought process behind pursuing aggressive treatments that may not alleviate suffering?
SP: I’ve observed that both doctors and patients focus mainly on living as long as possible, and have difficulty accepting medicine’s limits and talking about the inevitable end we will all face. When I was in my residency training, I myself subjected dying patients to treatments and procedures that I knew wouldn’t ultimately help them, because as a physician I felt tremendous pressure to offer anything I could to sustain their lives. I didn’t know that an equally important part of my job would be to recognize death’s approach and to talk with patients about what was most important to them in the short time they may have left.
Just as I, as a physician, felt an obligation to save lives, I’ve heard many patients describe pressure to continue “fighting,” trying any treatment offered to them, lest they be perceived as “giving up.” I see this unfortunate cycle daily at work: physicians believe it is their job to keep patients alive, and struggle to discuss what might matter most to patients in their last days. Patients and families navigating the fear, uncertainty, and grief that accompany serious illness may not know what questions to ask about the trade-offs implicit in choosing aggressive, hospital-based care for ultimately incurable ailments. Breaking this cycle involves earlier discussions about mortality, particularly for patients with a serious illness, so that they can avoid painful, ineffective treatments at the hospital, when many may instead prefer to spend their final days at home with their families, free of pain and anguish. Because the true and most tragic cost of the often excessive care provided at the end of life is the human cost—the suffering that patients and families and physicians experience when they seek to postpone rather than confront life’s end.
Q: In THAT GOOD NIGHT, you write a lot about your mother, an anesthesiologist, and her influence on your decision to become a doctor – as well as her reservations about the field you ended up choosing. How did your relationship with your mother shape your doctoring? What does it mean to you to have followed her into medicine but to practice a very different type of medicine?
SP: Some might say that my mother and I practice diametrically opposed fields of medicine: anesthesiology is concerned primarily with keeping patients alive in emergencies and during surgery, whereas palliative care seeks to normalize, embrace, and openly discuss mortality. And yet I modeled my own style of doctoring most heavily on my mother’s. My mother’s doctoring is very different from the styles of other doctors I know—including the internists, surgeons, and other palliative care doctors I typically work with—because she openly believes that a mastery of science and a respect for the sacred are equally essential to doctor well. She prayed with her patients before taking them to surgery, and prayed before she started a case in the operating room, taking comfort in both her mastery of technologic medicine and the oversight of the divine. But though she and my father long emphasized the fleeting nature of life and the inevitability of death, she struggled to understand why I would use my medical education to ease the suffering that accompanies the last stages of life. During my training, we fought often about my choice to practice what she considered a very depressing medical specialty. As she and her friends and family age, she is personally confronting her sometimes conflicting feelings about aging, dying, and medicine’s role in both. Ours is an ongoing conversation – though she often accepts and admires my work, I occasionally have to remind her gently that my field focuses on the simultaneous embrace of life as well as an acceptance of its ultimate end: much like what she and my father taught me.
Q: You describe dying as a messy, imperfect experience and suggest that the dying are not enlightened teachers of life—as they are often portrayed in books and movies—but rather that they are simply trying to continue living the best they can. Can you share more what you have learned from caring every day for patients facing the end of their lives? And from their families?
SP: Being with my patients reminds me how life can change in an instant—the ordinary instant, as Joan Didion writes. At the hospital where I work, the average age of the patients I see is between 45-50. Some of my patients are my age or younger. Others look and act like my parents. One day, they may have a cough and a fever that they assume is the flu; the next day, they are told they have incurable lung cancer. Accompanying them through the many losses of living with an illness reminds me that I shouldn’t take anything for granted, even the things I do mindlessly: chewing my food, or going to the bathroom without assistance, or walking around my home without getting winded. With both my patients and their families, I am the privileged witness of the incredible tenacity of human beings – we think we cannot face and survive the unimaginable, but we can and do. They have taught me that forgiveness is a gift and a balm, that love is elastic and accommodating of even our most despicable thoughts and behaviors, that we truly carry each other through this lifetime.
But this is not to romanticize what it means to be with dying patients: although they are often at different stages of understanding and accepting their illness, most of them are still trying to live and maintain a sense of normalcy, whatever that might mean for them. There’s only been one time when a patient has sat with me and said, “Let me tell you what I, as a dying man, have learned about life.” And his advice was two-fold: “Everyone should experience the love of a dog. And the cliché that we don’t know what we’ve got till it’s gone? It is absolutely, one hundred percent true.”
Q: You discuss how emergency medical care is very well coordinated, but end of life care and palliative care are much trickier areas. May families find themselves lost and confused in a maze of figuring out how to care for a dying loved one. What are some changes to our health care system that may make it easier for patients and families to get the type of care they need and value at life’s end?
SP: Part of why patients and families are so lost and confused when discussions of end of life care arise is that we often have these discussions in moments of crisis. From the moment a person gets a serious diagnosis, we should start discussions about their own personal goals and values, and about what palliative care has to offer. Far from discouraging people or taking away their hope, early discussions about mortality actually normalize the topic and help patients and families to plan for what they want for themselves. This is why major medical organizations including the American Society for Clinical Oncology recommend palliative care consultations early in the course of a serious illness, rather than at the point where a patient is critically ill in the ICU. Not only does this help patients and families to have the time to make better decisions for themselves, but it has even been shown to lengthen the lives of some patients.
I hope that in the future our health care system will integrate palliative care consultations into the routine care of patients with advanced cancer, heart failure, liver failure, and other serious conditions so that we proactively help patients and families to plan for hard scenarios well ahead of time. Since I have taken care of patients not only in the hospital but at home on hospice care, I have seen firsthand that dying well at home takes advanced planning and adequate resources. If a patient tells me that it is really important for her to be in her own bed and in the company of her family at the very end of her life, it is much more likely that we can grant her wish if we plan for it.
I also think that doctors and nurses in training need earlier and more comprehensive exposure to palliative care, so that they understand their role in caring for patients who they may be unable to cure. Mandatory lectures on and exposure to palliative care and hospice must be integrated into all medical and nursing school curricula so that all future care providers understand the important role they must play in caring for the dying. Acknowledgment of medicine’s need to deal better with death isn’t an impediment to innovation.
Q: What you see and do on a daily basis is very emotional and impactful. How do you cope with the difficulty and emotional strain of this work, and with facing dying so regularly?
Many people wonder why anyone would choose to practice palliative medicine, and most assume that it is dreadfully depressing and demoralizing. But it’s actually incredibly uplifting and satisfying, because I can make a huge impact on patients and families during one of the most vulnerable times in their lives. If I can control a patient’s pain well, they might be able to make it to the wedding of their granddaughter or renew vows with their own spouse. If I can help them to clearly identify what is most important to them in the time they have left to live, they may be able to admit that their time is better spent going to the beach instead of the chemotherapy suite. But it isn’t easy work. For many years, though I helped patients stay healthy and feel well, I didn’t understand what it meant to take care of myself. I’ve learned the hard way that if I don’t take care of myself, I cannot do this work. Every day, I remind myself of two things: firstly, the frequency of the physical and emotional suffering I witness is not normal. Secondly, my work and my life, though interrelated, are not the same. Acknowledging the boundary between the two keeps my workaholic tendencies in check, and ensures that I find ways to care for myself, so that I can continue not only to do this work but to enjoy my own life. I find tremendous comfort in nature, and try to go hiking, or visit the seashore, or even sit in a courtyard outside the hospital and look at the trees between visits to patients. I joke around with and vent to friends and coworkers, try new restaurants and bars in my neighborhood, and go to yoga. I also regularly watch the best satire around: reruns of The Colbert Report and Scrubs, episodes of John Oliver’s show, and random YouTube videos of cats befriending dolphins, lions hugging their old trainers, and dogs behaving badly. Thank God for the Internet!