In 2008, the Institute of Medicine (now the National Academies of Science, Medicine, and Engineering) released its influential report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, which called attention to the importance of the psychosocial needs of cancer patients and the consequences of these needs remaining unmet. The IOM report concludes:
Attending to psychosocial needs should be an integral part of quality cancer care. All components of the health care system that are involved in cancer care should explicitly incorporate attention to psychosocial needs.
Today, there is an increasing body of knowledge around this area, and organizations like the Commission on Cancer (CoC) and others are including distress screening as part of their guidelines and accreditation standards.
ACCC, along with its project partner APOS, identified three ACCC member programs that are serving as model sites for the “Psychosocial Distress Screening” project.
Between Life and Death is a collection of real-life stories of ordinary people who displayed extraordinary bravery as they approached the end of their lives. By acknowledging death as a necessary transition rather than an unknown to be feared and avoided, these patients embraced their end days by living each day they had left to the fullest. The patients profiled in this book provide guidance not only to other patients with cancer, but also to oncologists seeking insight into how best to help their patients at the end stages of cancer.
The book’s author, Kashyap Patel, MD—CEO of Carolina Blood and Cancer Care Associates in South Carolina, vice president of the Community Oncology Alliance, member of the ACCC Board of Trustees, and chair of the ACCC Clinical Affairs Committee—says he wrote Between Life and Death to capture his 30-year journey as a practicing oncologist in three countries and across 11 cities.
Dr. Patel explains that the purpose of his book is a response to the struggle he and his and his colleagues often face when treating patients for whom a cure is no longer an option. He has come to believe that great harm has been done to patients and their loved ones by framing cancer, the suffering it causes, and its frequent termination in death as a battle to be won or lost. This dominant paradigm, explains Dr. Patel, has led to the inevitable conclusion that cancer creates winners and losers, and death is an enemy to be battled until the bitter end.
Dr. Patel explains in his book that while death is indeed inevitable, fear of it is not. “While most published literature focuses on cancer as a battle and celebrates stories of cancer survivors, this compilation highlights the altruistic and humanistic aspect of the struggle against cancer,” he says. “My book reveals that the true reason death causes so much insecurity is our fear of it.”
Dr. Patel’s book narrates the stories of individual patients with cancer who have chosen to approach death as a transition on a longer journey rather than as a terminus to be feared. “We have the capacity of choosing how we react to the fear and challenges death brings,” explains Dr. Patel. In Between Life and Death, he shares his conversations with several extraordinary patients about their attitudes toward death as they approach the end of their lives. Through those conversations, Dr. Patel seeks answers to questions such as: How do people look at death? What impact does their fear of death have on their journey? How can we best spend the end of our lives with our loved ones? Is there an afterlife or a soul?
Below, we talk to Dr. Patel about the origins and aims of his project.
ACCCBuzz: Are oncologists taught how to help patients at the end of life?
Dr. Patel: In all the places I’ve practiced across three countries, I’ve seen very little training in death and dying for physicians. In U.S. medical schools, there still is no curriculum. Less than 10 percent of U.S. medical schools offer any classes in death and dying. Students may have 10 hours total in their five years of medical school, which is hardly sufficient.
Why is this? It may be because physicians have a sense of guilt about “failing” their patients who have not gotten well. Patients may pick up on that and feel that they are disappointing their physicians. It's like the relationship been a coach and his players. Even though the players may know that they are losing the game, they do not want to disappoint their coach.
But we have an obligation as physicians to help patients make their transition. It’s a comfort for patients when they realize that death is an inevitable part of their life journey. This book is a telling of stories about life and death from the point of view of patients who have encountered their own mortality. It's a very complex issue, and the more we shy away from talking about it, the more complex the problem becomes.
ACCCBuzz: What do you perceive as the most problematic ways oncology deals with death and dying?
Dr. Patel: We are consistently taught that our goal is to stop death through any means possible. When we develop new medications for cancer, we talk about them as a new way to defeat death. So, when a patient improves or recovers, we brag about stopping death. When death becomes inevitable, we feel like we have failed. Little attention is given to end-of-life care, as we have been programmed to believe that when our patients reach that stage, there is little we can do.
A big problem is that our medical system does not give patients adequate time to prepare to die. The average length of stay in hospice is three days, which is considered adequate. I think we should enable patients to spend six to nine months in hospice so they have time to come to a peaceful end of their lives. We celebrate many things in life: weddings, birthdays, major milestones. The one thing we don't celebrate is saying goodbye to our loved ones by enabling them to transition to the unknown.
ACCCBuzz: What roles should members of the cancer care team outside of physicians (e.g., nurses, social workers) play when working with terminal patients?
Dr. Patel: I spend approximately 20 minutes with my patients in the consulting room, but my infusion nurses might spend six hours at a time with them. Nurses and other caregivers in the office can take that time to engage patients in conversation and share examples of how people can have excellent quality of life, even if they decide not to receive curative treatment. They can explain to them how their relationships with their family members continue. Together, we are a team caring for our patients’ needs.
ACCCBuzz: What do you most want people to take away from this book?
Dr. Patel: We need to better prepare our patients for death. When I see advanced patients for their first consultation, I explain to them that palliative care will be an option at some stage, that, at some point, we'll have to sit down and talk about changing gears from trying to prolong life to focusing on quality of life. That sets the expectation that the aim is not a cure, that the aim is to extend quality of life. At some point, it will become necessary to make a compromise between quality and quantity and perhaps focus on quality of life and prepare for the journal beyond this life. I want this book to serve as a guide to teach all providers across all tiers how to effectively communicate with patients about end-of-life care.
ACCCBuzz: I’ve heard that you intend to donate the royalties from this book. Can you talk about the charity you selected?
Dr. Patel: I am giving it to a foundation that helps the marginalized, orphaned children of India learn acting skills. I have a friend in the theatre in Mumbai, and I donated a small amount of money to this foundation several years back. Later, my friend invited me to see the impact of my donation. I saw a child perform, and he was dressed in rags because he had no money. He told me afterward that he saw water come out of a faucet for the first time that day. In the slums, they have shantytowns, and there is no plumbing.
I was moved. In general, these kids have no future other than begging on the street. But one child who was trained there did actually go on to Hollywood to act professionally. That is an inspiration for so many, and I want to help other children believe they could also do that. It gives them some sense of hope. All proceeds from this book will support this foundation for orphaned children in Mumbai who may have no hope of living beyond the slums they grew up in. I will also match all proceeds with my own personal savings.
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