Compassion in Dying

In honor of Compassionate Houston week, I have prepared a Dharma talk on the theme of Compassion for the Dying. Recently, Gabriel sent me a moving TED talk titled What Really Matters at the End of Life by B.J. Miller, a triple amputee, who has worked at the Zen Hospice Project in San Francisco for thirty years.  B.J. defines compassion as “suffering together” and makes a distinction between necessary suffering, which unites caregivers and patients, and additional unnecessary suffering, which is unfortunately commonplace in the modern health system. His view of palliative care goes beyond hospice to include living well and providing comfort at any stage of life.

B.J. gives an example of a compassionate doctor supporting a terminal prostate cancer patient, who fulfilled a lifelong dream of rafting down the Colorado River while he could still enjoy the experience. Both doctor and  patient recognized that it is possible for human beings to face loss without regret.

On a regular basis, staff members at the Zen Hospice Project participate in a memorial ritual with family members as they gather around their deceased loved one. In a circle of remembrance, they share stories, songs, prayers, and moments of contemplative silence. In closing, family and friends sprinkle flower petals atop the body while it is carried away for cremation and/or burial.

According to B.J., Americans ask too much of hospitals, which should be reserved only for acute trauma and necessary treatment—not for birth and death, which are better supported in more intimate settings. He describes the heart of the Zen Hospice Project—the communal kitchen—where terminal patients gather to bake cookies or to simply delight in smelling the fragrant aroma and savoring the sweet taste of baked goods. B.J. states, “As long as we have even one sense operating, we have access to feeling human.” Alzheimer’s patients who have no sense of the past can enjoy sensory stimulation in the present moment.

Today, as a record number of aging elders are living longer than ever before, our society’s priorities are changing.  Some elderly terminal patients are opting out of chemotherapy and radiation treatment, so that they can enjoy sensuous and aesthetic gratification in their final days of life.

Last year, my 90-year-old godmother Barry was diagnosed with lung cancer.  She spoke with me about her decision to forgo the advanced aggressive medical treatment that my father and his colleagues offered to provide at the Sloan Kettering Institute in NYC. Instead, she is treasuring moments with beloved children, grandchildren and friends. A while ago, when my aging mother was hospitalized with thrombosis in her leg, a high point of her stay was the weekly visit of a therapy dog, cuddling in bed with her.

B.J. advocates health care that focuses on wellbeing and beneficence—human-centered rather than disease-centered care. For dying patients, he recommends homey architecture instead of functional shelter, and he proposes opportunities for playfulness and for listening to inspirational music. His recommendation is to create physical and psychic space for dying gracefully. B.J.’s TED talk ends with a rallying call: “Let death be what takes us—not lack of imagination!”

One of the assigned books for my Contemplative Chaplaincy internship is Living Well and Dying Faithfully: Christian Practices for End-of-Life Care, edited by John Swinton and Richard Payne. Tonya Armstrong, a clinical child and pediatric psychologist and a pastoral theologian from Duke Divinity School, contributed a chapter titled “Practicing Compassion for Dying Children.” She writes that parents and caregivers tend to be ambivalent about approaching and addressing the isolation that terminal children face. Because of their unconscious resistance to accepting that someone so young is about to die, caregivers often take long breaks from being in the sick child’s hospital room, interact very briefly with the patient, and avoid disease-related topics of conversation. Adults may be leery of discussing the child’s appearance, medications, or future events and holidays. As a result, ailing children may mistrust their caregivers and use distancing strategies as protective mechanisms, such as refusing to talk, feigning sleep, crying continuously, or withdrawing.

Tonya Armstrong recommends incorporating opportunities for play, education and typical activities of childhood into hospital stays.  She suggests that caregivers of dying children engage in compassionate practices of hospitality, mindful presence, and deep listening. (I would add that these kinds of compassionate practice are essential for caregivers of anyone who is suffering.)

Hospitality involves physical and psychological presence. Genuine presence entails giving both time and space to another, and it can begin with gestures as simple as making eye contact and greeting a patient by name. Instead of presenting medical information to patients or family members and treating them as if they are consumers, caregivers can engage in verbal and nonverbal communication that flows in both directions.

Caregivers who listen deeply attend to a patient’s concrete experience of vulnerability accept the challenge of confronting their own vulnerability, and they validate a patient’s dignity. Such caregivers pay attention to both the content and the process of conversations, noticing the presence or absence of religious or spiritual language, the repetition of particular themes, and that which remains unspoken. Skillful caregivers invite reflection instead of delivering glib reassurances.

Koshin Paley Ellison from the New York Zen Center for Contemplative Care is training me and two other Contemplative Chaplaincy interns to develop skillful, compassionate ways of communicating with dying patients. The following example comes from a report of a recent interaction that I had with a terminal AIDS patient at Omega House hospice:

P-1: I don’t like to accept help from people.

C-1: What is hard about receiving help?

P-2: I don’t want to feel dependent.

C-2: We are all interdependent. You were dependent on your mother to be born.

P-3: That’s true, but I feel more in control when I’m a helper.

C-3: I understand that in my own experience.  And you are facing mortality, which most people fear because it’s the ultimate loss of control.

P-4: Yes, I’m not afraid to die. Some of the most powerful and wealthy people pretend that death won’t touch them.

C-4: When they die, they are powerless and can’t take any of their possessions with them.

P-5: I own very few possessions. When I was homeless, I learned to live simply.

C-5: You have learned valuable lessons about impermanence.

In his book A Theology of Compassion, theologian Oliver Davies refers to the philosopher Martha Nussbaum’s definition of compassion “as cognitive in our awareness of an other’s distress, affective in how we are moved by that distress, and volitional in that we actively seek to remedy it.” She describes compassion as the “basic social emotion.” Davies points to the importance of a developed, conscious self, which intentionally undertakes compassion practice, willingly taking the risk of entering into another’s suffering.

Bryan Stone suggests in his book Compassionate Ministry that freedom from self-absorption—from apathy, fear, anxiety and self-reliance—is freedom for creatively loving others. The fear of joining the suffering of another and thus becoming vulnerable oneself is replaced by the joy of comforting a suffering patient and family. Bryan states that whereas individualism can dehumanize us, compassionate ministry re-humanizes us.

In their research on compassion, Nouwen, McNeill and Morrison agreed that “compassion is not a bending toward the underprivileged from a privileged position; it is not a reaching out from on high to those who are less fortunate below;” it is not a gesture of sympathy or pity for those are failing to meet expected standards. “On the contrary, compassion means going directly to those people and places where suffering is most acute and building a home there.” From Nouwen’s viewpoint, “Compassion is not so much about specific gestures as it is a way of living together:”

During my volunteer work at Omega House, I realize that I can bring kindness to the simplest of interactions with the residents. One day, I visited L, who has been confined to bed for weeks after a series of debilitating seizures. I found him so tangled up in the sheets that he could not sit upright or even reach the call button for help. Immediately, I felt compassion for his discomfort. With his cooperation, I managed to disentangle his arm and his hospital gown from the bedsheets, and I asked a nurse for help to lift his body so that he could lean his back comfortably on some pillows. I assumed that he was too groggy and confused to interact with me verbally. But, to my amused surprise, L rewarded my efforts by joking, “Now I feel supported!” We laughed together and had an unexpected moment of intimacy.

When we recognize our own brokenness, we have an enhanced capacity to connect with others’ brokenness. Bryan Stone observes that compassion is not only recognizing and sharing suffering, but also working toward liberation from that suffering.  Compassionate care is essentially a path to love.