Despite studies showing that a majority of patients prefer to die at home rather than in an institutional setting,1 in many parts of the country, over 30% die in nursing homes and over 50% die in hospitals, according to Ira Byock, MD, Director of Palliative Medicine, Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire, and Professor of Medicine at the Geisel School of Medicine at Dartmouth, Hanover, New Hampshire. The author of The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life (Avery Trade, 2013), Dr. Byock contends that because the focus of care is often solely on treatments to sustain life, critically ill and dying patients may endure their last months or weeks of life in physical distress and emotional despair, feeling undignified and a burden to loved ones. “While dying is hard,” said Dr. Byock, “it doesn’t have to be this hard.”
The ASCO Post talked with Dr. Byock about when the initiation of palliative care is appropriate, how to engage patients in shared decision-making about their end-of-life care, and what it means to die well.
Timing of Palliative Care
When should patients be considered for palliative care?
In our medical center, we introduce palliative care as early as possible for patients with newly diagnosed pancreatic cancer, stage III lung carcinomas, and glioblastomas, for example. But the intensity of our involvement may vary during the course of a patient’s illness.
For people with early pancreatic cancer, our palliative specialists are now part of the oncology team that helps get them through neoadjuvant treatment and to definitive curative surgeries. We also help patients with metastatic disease manage their symptoms and nutritional requirements as well as cope with the difficult emotional challenges and spiritual issues that often arise when people have an incurable condition and they know that they will die of their disease.
Integrating Palliative Care
Is palliative care being incorporated into traditional cancer care more consistently now?
Yes, there is no question that that is happening. We know that we provide better care for our patients when palliative care specialists and oncologists work together. There are a number of evolving models for integrating palliative care services into oncology care.
Some community practices may have only started thinking about incorporating palliative services into their patients’ care, but most leading cancer centers now have palliative care teams in place working together with the oncology care team. There is still a large unmet need, and we know that there are workforce issues with palliative care. As a specialty, hospice and palliative medicine is developing practical and intensive medical training courses so that evidence-based care and the skill set of palliative care specialists are available to oncologists and other medical specialists.
Patient Fears
What do patients fear most about dying?
For many people, it’s not death or no longer existing that they fear as much as dying badly. They may fear dying while suffering, in pain, and feeling undignified, but also dying with things left undone and worrying about what will happen to their spouse or their children. As highly personal as these issues are, we actually have therapeutic responses.
In my own writing and research, I’ve applied a developmental framework to thinking about the challenges and issues that confront people during this phase of life. It has helped me understand the nature of the real suffering that people can experience. It has also given me a better appreciation of the opportunities dying presents, to help patients go through these difficult, unwanted challenges in ways that not only enable them to feel inner peace, but that also help family members during their grief after the patient’s death.
In my experience, complicated grief is usually the product of not just the pain of loss of a loved one, but the doubts, regrets, and recriminations—the what ifs—and the missed opportunities of leaving things unsaid. We can often prevent those sources of future sufferings simply by being honest with patients and their loved ones. As clinicians we can help people to mend and nurture relationships and work through the practical matters of life’s completion.
A ‘Good Death’
Can you describe what constitutes a “good death”?
A “good death” cannot be derived from any medical criteria that I could elaborate. For most people, it has to do with having a sense of well-being, a sense that there is nothing critically important left undone or unsaid between the patient and those he or she loves. It involves having a sense that you will be remembered in a positive way, knowing that people you love know you love them, and not worrying that your very existence at this moment is too heavy a burden on your family.
I much prefer the term “dying well.” People initially read the word “well” as an adverb describing the process of dying, but it is more powerful to read it as an adjective instead. Can a person be well even as he or she is dying? My clinical and personal experiences lead me to answer with a resounding yes. And all of us as professionals, family members, and members of our communities can care for people in ways that at least preserve patients’ capacity to have a sense of well-being during this time.
Preparing the Patient
How can oncologists help prepare their terminally ill patients for end-of-life care?
During my career as a physician, I’ve felt many times the tightness in my own chest and stomach when having to give bad news to a patient—often to a patient with whom I’ve had a relationship for some time, and that is particularly hard. I hate the fact that people die, but I can’t apologize for mortality. It’s a part of living.
So I deliver the news seated, leaning forward, and facing the person. I allow all the compassion that I’m feeling and all the pangs that I’m feeling to be evident. I describe the situation simply, stating the facts as they are—for example, “The disease is back, it looks like it has grown through the last treatment, and I think we are at a stage where more treatment may harm you more than it would likely help you.”
There is always care to be provided. How much we have to offer becomes evident when we make the shift from seeing illness as solely medical—problems to be solved—to understanding that illness is first and foremost personal. Ironically, when illness is understood as a life experience for the patient and his or her family, it becomes simpler to serve the person who is ill and meet his or her real needs.
Often patients are afraid of what comes next and grasp at the straws of illusory advantages of the next chemotherapy or the phase I trial. Of course, for some people that is the right path. But for patients who will not benefit from additional active treatment, we can respond effectively to their physical suffering, ease their fears, and help them face the future.
Our mission in the palliative care service at Dartmouth-Hitchcock is to help patients get through their active medical treatments by addressing their physical symptoms, such as pain, anorexia, and fatigue, and to also help them through the very difficult but normal challenges of completing a life. The medical literature clearly shows that by taking care of patients holistically, often they are able to stay on clinical trials a little longer, they sleep better, they eat a little better, and they are less fearful about getting their pain under control. It is not surprising that studies show that when palliative care is concurrent with cancer care, people tend to live longer.2
Shared Decision-making
Please talk about the role of shared decision-making in end-of-life care.
Although discussions about treatment options often require nuanced conversations, the process of shared decision-making is straightforward. When I was growing up in the 1960s, shared decision-making happened when the doctor shared his decisions with his patient. Now we understand that the patient is an expert in his or her values, preferences, and life’s priorities, and we are expert in the diagnostics and therapeutics of disease. In addition to offering the best treatments possible for a patient’s disease, we really have to find out what the “best care” is for a given patient by inquiring in a personal way. As physicians, we can’t assume that we know what someone would want.
I think that the very definition of quality care is when the best medical treatments are applied in conjunction with the values, preferences, and priorities of the patients we serve. Delivering quality care in this tailored, highly personalized way is also deeply satisfying for physicians. ■
Disclosure: Dr. Byock reported no potential conflicts of interest.
References
1. Fischer S, Min SH, Cervantes L, et al: Where do you want to spend your last days of life? Low concordance between preferred and actual site of death among hospitalized adults. J Hosp Med 8(4):178-183, 2013.
2. Temel JS, Greer JA, Muzikansky A, et al: Early palliative care for patients with metastatic non–small cell lung cancer. N Engl J Med 363:733–742, 2010.
