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- The Many Halloweens
Sarah is 60 years old and dying of cancer. Amid respirators and feeding tubes she refuses “all this noise and machines.” She says, “I am dying. My tears are not because I am sad I am dying. I am just so disheartened that no one wants to talk to me about this and just sit with me. I wish someone would sit with me, like you two, and just be with me at this crucial time.”
Like Sarah, we’re all going to die, and from her we can learn what’s most important in end-of-life (EOL) care: being human. Our advancing technology and aging demographics mean we’re living longer, but also that EOL care is now a growth industry, and often a hectic, stressful one. Hospice and palliative caregivers, volunteers and family members face the literally awesome task of guiding growing numbers of patients at the end of their lives through the most profound experience of all. Technology and bottom lines can distract caregivers from what we know: if we care and advocate for ourselves well, we can also take care of others with respect and dignity.
For end-of-life clinicians or caregivers, being the bridge to what’s next demands courageous presence in the face of death, the ability to listen without needing to fix the problem, maintaining compassion and avoiding empathy fatigue while caring for many suffering and dying patients.
Such skills aren’t taught consistently in medical or nursing schools, and working without them can be frustrating and draining for clinicians.
Hence the growing interest in bringing contemplation into caregiving settings, and the emergence of a new field that applies contemplative approaches to end-of-life (EOL) and palliative care. “Contemplative care” is what meditation practitioners bring to the bedside, integrating mindfulness practice, compassionate action, and moment-to-moment awareness into care, emphasizing well-being not only of patients but also of clinicians, family members and everyone involved in care.
Stress, empathy fatigue, secondary trauma and burnout are constant occupational hazards for EOL caregivers, which can also affect care. Prolonged imbalances lead to feelings of frustration, inadequacy, and guilt, as well as to higher rates of absenteeism, depression and even suicide. Attrition rates for EOL caregivers are shockingly high: 30 percent for nurses, 30 – 50 percent overall for physicians, including nearly 50 percent for oncologists.
Think about that. Why do so many leave the profession, and what could prevent it? Conventional self-care advice for clinicians usually focuses on keeping a professional boundary with patients and taking care of oneself after hours. A contemplative care approach trains EOL and palliative clinicians to be more present and intimate on the job — with themselves, patients, family members and staff. A mindfulness practice can improve communication skills, self-awareness, self-care, and the quality of EOL care, and help caregivers recognize when they need to seek help.
The New York Zen Center for Contemplative Care collaborates with major medical centers including Beth Israel and Columbia Presbyterian. We train chaplains and caregivers working in EOL settings, who deliver contemplative care to tens of thousands of patients and family members each year. Their work is rooted in Buddhist practice which has very specific teachings about being present with old age, sickness and death. But other contemplative traditions and approaches can and do apply. Our chaplains are grounded in mainstream theologies and accredited through the Association of Clinical Pastoral Education.
Earlier this year, we partnered with the Garrison Institute in New York to hold a first-ever national, public Buddhist Contemplative Care Symposium, through which we took stock of this new movement in caregiving, one that is committed to connection and compassion for everyone involved in EOL care: volunteers, hospital presidents, nurses, physicians, bed-bound patients. It was the first time doctors, nurses, chaplains and social workers and Buddhist teachers gathered and shared best practices and build community.
As we were leaving Sarah’s room, she smiled and said, “Thank you both for pulling up a chair and sitting down. Thank you for looking at me. I felt you so engaged and that you were curious about me. When we sat in silence, which was kind of awkward at first, it turned out to be just wonderful because you didn’t run out. Maybe this is what I missed my whole life—care, attention and curiosity and silence. Thank you for offering that.”
She died quietly the next day, leaving us an invitation to imagine a health-care system that provides not only care and attention but also curiosity, presence and when there is nothing more to say, silence.
Koshin Paley Ellison and Robert Chodo Campbell are the co-founders of the New York Zen Center for Contemplative Care