In 1990, when Bruce (B.J.) Miller, MD, was an undergraduate at Princeton University, the practice of medicine was far from his mind. Then a student in Chinese and Asian studies and later an art history major, Dr. Miller would come to pursue a career specializing in palliative medicine after an accident during his sophomore year at Princeton resulted in the loss of his legs below the knee and his left forearm. That experience, said Dr. Miller, allows him to bring a unique perspective to his work.
“I went into medicine not out of some great love for medical science,” said Dr. Miller. “I was looking to gain a tool bag to be of service to patients and one where my experiences as a patient and my growth and aspirations as a person and a human being in this world were relevant to the job. The fact that the world needs more palliative care docs was also appealing to me.”
Today, Dr. Miller is Executive Director of Zen Hospice Project, a San Francisco–based nonprofit residential care facility that brings together the spiritual and humanitarian approaches to end-of-life care, and Assistant Clinical Professor of Medicine and Attending Physician at the Symptom Management Service of the University of California, San Francisco (UCSF) Helen Diller Comprehensive Cancer Center. He was recognized for his work in hospice and palliative medicine with the 2014 American Academy of Hospice and Palliative Medicine Project on Death in America Palliative Medicine Community Leadership Award.
The ASCO Post talked with Dr. Miller about his work in palliative and end-of-life medicine and the skills necessary to effectively address the needs of the dying.
Core Activities
Please describe the work you do at Zen Hospice Project.
The core of what we do is in direct care for patients at the end of their lives. The six-bedroom residential care facility we call the Guest House is a comfortable, beautiful place, which is intentional because we feel very strongly that the aesthetic world and the environment in which we live and function impacts how we feel. It is common for people to walk through the door and say it feels like coming home or “I’m glad this isn’t a hospital.”
We are also increasingly involved in providing training and support for health-care workers. For almost 30 years we have trained volunteers who work at our Guest House and at Laguna Honda Hospital, San Francisco’s safety net long-term-care facility. Now, we train health-care professionals, including home health aides, as well. And 3 years ago, we developed and continue to host Integrative Approaches for End-of-Life Care, an interprofessional course at UCSF.
Because we strongly believe in the importance of engaging the community in the work we are doing and since so many people have a hard time with the subject of mortality and do not understand what palliative care is, we hold public events to introduce these concepts to the very community we are trying to serve. For example, we invite community members into the Guest House to experience the environment, and we host Death Cafes so people can discuss death in a safe and social atmosphere, which helps break down the fear many people have of death and dying.
Over the years, various health-care professionals have asked us how to start a similar Zen Hospice program in their residential facility or how to start a palliative care program in a hospital setting, so we just started hanging out our shingle as a consulting group to help health-care systems, payers, and individuals develop programs of their own. We recognize that this field needs to develop on multiple planes, and we are trying to do our part.
Essential Skills
What skills are necessary to be an effective provider in end-of-life care and help patients with cancer die comfortably and with dignity?
Palliative care and contemplative care are our disciplines. While some of what it takes to be an effective provider is in delivering what we know to be a really good system of physical care, the additional value we bring to that system is found in elements steeped in the existential, spiritual, and relational components of care. The standards of training in the field of palliative medicine include disciplines in the physical, emotional, and spiritual realms, but when it comes to existential suffering and trying to find meaning in life and reconcile difficult relationships and come to terms with the fact that we die, the field still has much to learn.
At Zen Hospice, we flesh out those other spheres. How we do that is through the training we provide to staff and volunteers about how to mindfully care for the dying, which focuses on the fundamentals of hospice and palliative care within a broader context of contemplation and awareness and is inherently humanistic or spiritual in practice, and we have found the result to be profound.
We are asked all the time if people have to be Buddhist to work here or to be a patient here, and the answer is absolutely not. The training we provide is informed by Buddhist principles, but we are a secular organization by license and in every other way. The guiding principles we adhere to cultivate a sense of being in the here and now, unburdened by future concerns that may or may not happen, and everyone can relate to that discipline.
Helping Patients Find Fulfillment
Do the humanistic and holistic approaches that you bring to end-of-life care allow patients to live more fully until death occurs?
Yes, because with good palliative care and symptom management, we can usually clear away so many of the distracting forces, such as unabated nausea or pain, preventing a peaceful death. Palliative care is pretty good in those areas. What it is not so good at is helping patients find fulfillment in the time they have left, and that is a big part of how we see our work functioning best.
Once we get our patients’ physical symptoms under control, the relational work begins. It may be in helping patients review their life and construct their personal legacy or in reconciling relationships that have gone awry, and that is where the works starts to feel creative.
After the mindfulness part of our work, we see what we do as a creative pursuit. If how we live and die is an experience, then we can help create meaningful experiences for our patients as part of their environment of care—for example, tending to patients’ senses to help them stay connected to the present moment of life by cooking them a wonderful meal, holding their hand, and talking or singing to them. These are the things that immediately reward us for being alive.
Patient Concerns
What are your patients’ greatest concerns: fear of dying? leaving loved ones? leaving life unfinished?
My sense is that they mirror the fears about death and dying in the general population. In a 2012 survey by the California HealthCare Foundation on the attitudes of California citizens on death and dying, among their biggest concerns was being a burden on their loved ones.1 As a provider of residential hospice and palliative care, we assume many of the caregiver roles often supplied by family and friends, so they are free to go back to their role of just being family and friends with the patient and not taking on the extra responsibility of caregivers.
The two other main patient concerns, according to the survey, were fear of being in pain, which hospice and palliative medicine are very good at controlling, and being at peace spiritually, which we are very well suited to help patients achieve given our Buddhist roots.
Cancer Centers and Hospitals
How would you assess the way palliative care is practiced in cancer centers, and what can they do to improve care for their terminally ill and dying patients?
Cancer centers and hospitals have different financial pressures, different regulatory burdens, and different staffing requirements than we do, but for the dying patient, the experience is the same regardless of where the person is getting care.
A simple answer about how to improve care in cancer centers and hospitals would be to develop a palliative care program and support it well. Beyond that, there are nuances in the field that need to be developed, including the existential and spiritual pieces I talked about earlier. Those elements are playing out within the patient no matter what the setting, so they need the attention of all these disciplines.
It may be that cancer centers need to add chaplains, members of a peer support group, or patient navigators to their multidisciplinary medical teams, or they may need to train hospital volunteers to provide patients with basic human accompaniment in their final days. In my position at the UCSF Helen Diller Comprehensive Cancer Center, I find that I spend a lot of my time apologizing to patients for a medical system that is not prepared to provide the humanistic and holistic care they need and for oncologists who are not trained in palliative medicine or who do not have the time to spend with dying patients.
A concern I hear a lot from patients is that they feel abandoned by their oncologist once they are no longer receiving active treatment for their cancer. I know that oncologists are under a lot of pressure and have limited time to spend with each patient, and it is impossible to expect them to do everything, so the problem is complicated. But if cancer centers could address patients’ concerns about their feelings of abandonment, maybe through the development of a volunteer program that is well staffed and trained to cultivate awareness and sensitivity to what patients may be experiencing, it would go a long way to easing their fears. It might be as simple as having a volunteer sit quietly by the patient’s bedside. Just the presence of another human being in the room can be comforting.
The last suggestion I would add is to make the cancer center seem less like a factory and fearful place and more like a comfortable, safe environment. This can be done in several ways—for example, by installing more windows and allowing more natural and nonfluorescent light into hospital rooms and by tending to patients’ senses with more flavorful foods and aromatic smells.
These are remedial changes. However, I would really love to see building designers and architects take on the challenge of pivoting hospitals to a more patient-centric environment. I wonder why no great architect has taken up that challenge—yet! ■
Disclosure: Dr. Miller reported no potential conflicts of interest.
Reference
1. Lake Research Partners and the Coalition for Compassionate Care of California: Final Chapter: Californians’ Attitudes and Experiences With Death and Dying. California HealthCare Foundation, February 2012. Available at chcf.org/publications/2012/02/final-chapter-death-dying. Accessed November 19, 2015.
GUEST EDITOR
Addressing the evolving needs of cancer survivors at various stages of their illness and care, Palliative Care in Oncology is guest edited by Jamie H. Von Roenn, MD. Dr. Von Roenn is ASCO’s Senior Director of Education, Science and Professional Development Department.
