Having the Talk: When Treatment Becomes End-of-Life Care

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Conversations about end-of-life care are among the most important interactions doctors and patients have. But for health care providers of all ages, backgrounds, and specialties, they may also prove to be the most challenging.

Decades after the rise of palliative care as a clinical specialty, enormous progress has been made in teaching medical students and clinicians how to navigate end-of-life issues. These conversations have become more crucial because people are living longer with chronic and serious illnesses.

Yet according to Dying in America, a 2014 report from the Institute of Medicine (IOM), there is still a long way to go. The report’s authors note that most people, “particularly younger, poorer, minority, and less-educated individuals,” still do not have these end-of-life conversations with their physicians. The result is that many people receive treatment they may not have wanted and die in ways and places that they would not have chosen.

The authors of the IOM report recommended that training in palliative care become a credentialing competency and a requirement for licensure for all specialties, including primary care, that involve the management of advanced serious illness. Moreover, the report states that medical schools should ensure these providers are skilled in basic palliative care, which includes communication skills, interprofessional collaboration, and symptom management.

Teaching students and trainees to be adept at end-of-life conversations takes time, which can be in short supply during medical school and graduate training. The result is that many clinicians have been “self-taught” when it comes to having these discussions, observed David Longnecker, MD, emeritus professor of anesthesiology and critical care at the University of Pennsylvania Perelman School of Medicine; chief clinical innovations officer with the Coalition to Transform Advanced Care (C-TAC); and former AAMC director of health affairs.

Palliative care experts believe, however, that any curricular investment in improving end-of-life communication is more than worthwhile. “There aren’t enough palliative care experts to go around,” said Robert Truog, MD, co-founder of the Institute for Professionalism and Ethical Practice (IPEP) at Boston Children’s Hospital and director of the Center for Bioethics at Harvard Medical School. “We need to raise competency across all providers.” In a similar direction, Medicare will begin reimbursing providers for end-of-life discussions on January 1, 2016.

Not one conversation, but many

First and foremost, palliative care experts believe that lessons about end-of-life communication should be reframed as not one conversation, but many, which should begin long before death and even before hospitalization. “Advance care planning should be a conversation that patients have with their doctors and that evolves over time,” said Mildred Solomon, EdD, president and CEO of the Hastings Center. “Families are hungry for guidance, so doctors need to initiate that conversation; it can’t be a dance of ‘You go first’—‘No, after you!’ And for some doctors, the psychological resistance to initiating is enormous.”

Clinicians may shy away from talking about end-of-life care for a variety of reasons. For some, the emotional toll of giving bad news and witnessing the pain of patients and families is extremely difficult. Others may feel like such conversations are an acknowledgement that their care has failed. Still others conclude that if they can’t do anything more for patients medically, they have nothing left to offer.

Honoring the Hippocratic Oath, though, means that warmth, sympathy, and understanding are also at the foundation of being a physician. Conducting skillful and compassionate end-of-life conversations involves not only the logistics of advance directives, designation of a health care proxy, and documented wishes about resuscitation, but also a specific set of relational and empathic skills that can, in fact, be nurtured and taught.

Some providers have more of a natural affinity for communication and relational skills, but others can learn and practice, said Elaine Meyer, PhD, the other co-founder of IPEP. “Providers are often afraid not just of initiating the conversation, but of being unprepared and doing it poorly. We encourage busy staff to sit with the patient at the bedside, rather than stand; to be curious; to take the time to listen well; and to ask open-ended questions about the patient’s experience, wishes, and goals. The hope is that everyone can at least have solid grounding as a capable and confident communicator under these circumstances, and know how to partner with someone who may be more experienced.”

“More and more, people come to the end of life in fairly unpredictable ways,” said Joanne Lynn, MD, director of the Center for Elder Care and Advanced Illness at the Altarum Institute. “Because people are living so much longer with chronic illnesses, you need care planning that isn’t just CPR or signing a DNR—you need planning on how the patient wants to live.”

For many medical learners, who typically are in their twenties and thirties, youth itself can be a barrier to engaging with patients who are older adults. “One problem for med students and residents is their lack of life experience,” said Lynn. “[Trainees] need to learn a way of understanding the experience of people living with serious chronic conditions, the experience of being very old and very sick.”

“There may not be anything left to do medically, but there is always something left to do for the patient.”

Benjamin Bensadon, EdM, PhD

Curricular time constraints exacerbate the problem, Lynn continued. Trainees need longitudinal experience, not just one-month rotations, in caring for people with advanced illness. “If students or residents drop into a person’s life just for a procedure, for example, that’s all they see,” she said. To have a meaningful conversation, trainees need to understand the challenges that a patient lives with each day outside the hospital.

Kathleen Davis, PhD, co-chair of the Children’s Project on Palliative/Hospice Services program at the National Hospice and Palliative Care Organization, says that in pediatric palliative care, she opens conversations, and relationships, with seriously ill children and their families from the moment they arrive at the hospital. “You develop a relationship so that when the subject of end of life comes up, you have a real relationship already,” she said. “So you kind of have an idea of what the family wants before you get to that later discussion.”

End-of-life conversations can also intersect with language barriers and cultural, ethnic, or religious beliefs that make clear communication between doctors and patients more complicated. “Some cultures believe that a person should die only by the will of God, and humans shouldn’t interfere,” said VJ Periyakoil, MD, associate professor of geriatrics, hospice, and palliative medicine at Stanford University School of Medicine. “Others ‘pray for a miracle’ for a patient in the ICU when the doctor knows that the treatment is prolonging not the patient’s life, but the dying process.”

The goal is to teach providers to remain aware of patients’ life experiences and not be dismissive, Periyakoil said. “Our stance has to be, ‘I may know a lot about medicine, but you’re the expert on yourself, so we need to work together.’”

Advances in Training

Simulation and multi-faceted feedback are often used to teach medical learners, residents, and clinicians how to better navigate end-of-life discussions. At Florida Atlantic University’s Charles E. Schmidt College of Medicine, clinical geriatric psychologist Benjamin Bensadon, EdM, PhD, has developed a simulation program in geriatric communications. Ethel Wainer, a 92-year-old local resident, plays a “standardized patient” with COPD who, unbeknownst to her, has just been diagnosed with small-cell lung cancer. She is expected to live for four months. Bensadon portrays her brother and health care proxy.

Third-year medical students take turns acting as Wainer’s doctor. They discover that neither she nor her brother has been told about her diagnosis, and they must deliver the news. The brother is determined to see her attend his son’s graduation from medical school in six months. Wainer’s character, nearing the end of a long life, is exhausted and doesn’t want to prolong care. The simulations are videotaped, and the trainees receive immediate feedback from other students, Bensadon, and Wainer, and have a chance to review the tape with Bensadon the following day.

Invariably, the simulation is an impactful exercise. Wainer remembers one student walking out; several others stood frozen in the doorway throughout the discussion rather than coming to the bedside. Bensadon remembers one student tearing up while watching the video; another decided to change specialties. But most, Bensadon says, are glad to have done the exercise and to have had a chance to evaluate their own work.

Wainer believes skillful and caring conversations about end-of-life care are among the most crucial services that clinicians can provide. “I and many people I know are more afraid of being in pain than of dying,” she said. “Doctors don’t have to be so uncomfortable talking about death.”

Bensadon translates that sentiment directly to teaching about end-of-life discussions. “There may not be anything left to do medically,” he said, “but there is always something left to do for the patient.”

“Yes, it’s important in medicine that we be able to do procedures well,” said Truog. “But what families will remember more is what was said to them during care—whether those important conversations were beautifully stated or badly done.”

For Periyakoil, improving end-of-life care is a loudly ticking clock. “We have 2.6 million Americans die each year, and most don’t get to weigh in on how and where that happens,” she said. “Most people want to have that chance.”

 

This article originally appeared in print in the July/August 2015 issue of the AAMC Reporter.