Compassion as a Guide for Care for the Dying
Compassion as a Guide for Care for the Dying
By Roshi Joan Halifax
Compassion in care of the dying involves:
Listening with full attention
Nonjudgmental acceptance of self and patient
Emotional awareness of self and patient
Self-regulation in the caregiving relationship
Compassion for self and patient
“I’m up late admitting patients to the inpatient hospice unit. Just when I think I’m too old for these late nights without sleep, a person in all their rawness, vulnerability and pain lays before me and as my hands explore the deep wounds in her chest and my ears open to her words, my heart cracks open once again.... and, this night, a sweet 36 year-old woman with her wildly catastrophic breast cancer speaks of her acceptance and her hope for her children, and she speaks with such authenticity and authority. And her acceptance comes to me as the deepest humility a person can experience and then again, once again, I remember why I stay up these late nights and put myself in the company of the dying.” - Gary Pasternak, M.D., Associate Faculty, Being with Dying
These are the words of a palliative care physician who was trained in Upaya’s professional training program in compassionate end-of-life care. Dr. Pasternak joined our faculty and is now the director of a hospice in Northern California. Dr. Pasternak’s words reflect the inner qualities that make for a great physician. He exemplifies what we endeavor to cultivate in clinicians: this heart of compassion, deep humility, courage, and respect. As Dr. Pasternak was an early trainee in our Being With Dying clinician training program, he taught us much about what will serve doctors and nurses who are faced daily with patient, family, and institutional challenges. He, like so many others in our program, also communicated what our core faculty knew: this work with dying people touches the deepest values that we have as human beings and can lead us back to ourselves in the right circumstances.
I had long known this because this world of caregiving had first opened for me in the process of my grandmother’s tragic illness and death. I also knew this from my anthropological work in Africa and the Americas. As an anthropologist and student of religion, I had looked deeply into the world’s religions, exploring teachings related to compassion, dying, and death that could serve those who were facing death in the contemporary world and also those caring for the dying. In addition, I was fortunate to have received teachings and engaged in practices from the Theravada, Mahayana, and Vajrayana schools of Buddhism. I learned that all three schools of Buddhism could contribute greatly to the understanding of how to train clinicians and caregivers in compassionate care of the aged, the dying, and those suffering from catastrophic illness. I also learned that other cultures often care for their dying in ways that are more compassionate and realistic than ours here in the United States.
I began my direct work with compassionate care of the dying in 1970 as a medical anthropologist at the University of Miami School of Medicine’s Dade County Hospital in Miami, Florida. While working in this big county hospital, I saw that the most marginalized group of people in the hospital system were those who were dying. As someone involved with curriculum development at the medical school, I endeavored to introduce the concept of compassionate care of the dying into the institution’s curriculum, recognizing the stress experienced by clinicians and dying people in relating to existential and psycho-spiritual issues of mortality.
In 1972, I collaborated with psychiatrist Stanislav Grof in a project using LSD as an adjunct to psychotherapy under the auspice of the National Institute of Mental Health. The Buddhist perspective on impermanence was profoundly relevant to those facing death; the Buddhist vision of compassion became a base note in our work in this contemporary rite of passage.
Over the years, I learned of a number of programs using different teaching methods to aid healthcare professionals in the knowledge and skills to care for dying people. Despite the development of these curricula, which are often behaviorally based, healthcare professionals frequently report a lack of skills in psycho-social and spiritual care of dying people and report suffering from “compassion deficit.” They also report difficulties in caring for the dying with significant levels of pathological altruism, vital exhaustion, secondary trauma, moral distress, unresolved grief, and other psycho-social and existential ills. In addition, there are increasing reports of “patient dissatisfaction” and patients reporting that clinicians lack empathy and compassion.
Over the decades of working in the field and hearing these reports, I have identified six “edge states” or challenges that clinicians can be subject to. Each of these conditions has within it positive potentials. At the same time, they can be pernicious experiences and can cause clinicians to leave medicine and nursing. These states are: 1) pathological altruism—an excess of altruism that mentally or physically harms the experiencer; 2) burnout or vital exhaustion—cumulative work demands and stress; 3) secondary trauma—dysfunction that arises from prolonged exposure to the suffering of others; 4) moral distress—moral conflicts when the clinician knows what is right to do but cannot do it; 5) horizontal and vertical hostility—behaviors of disrespect and bullying among members of a peer group or disrespect of those deemed lower in “rank”; 6) structural violence—violence in the system that marginalizes or harms individuals or groups.
To address these complex concerns and the profound need for compassion in caring for the dying, in 1996 I created a curriculum to train professional caregivers in compassionate care of the dying: “Being With Dying: Professional Training Program in Compassionate End-of-Life Care” (BWD). In addition, I have developed a typology for compassion, a compassion model, and a compassion intervention.
In exploring with professional caregivers what they feel is important in a compassion-based interaction with their patients, a number of features have been articulated, in addition to the model. These aspects are outlined by educator Mark Greenberg in relation to teachers in engendering mindfulness and compassion in the classroom. They translate well for clinicians in fostering Contemplative Mindful Compassion-Based care (CMC):
Listening with full attention:
Correctly discerning patient’s behavioral cues
Accurately perceiving patient’s verbal communication
Reduced use and influence of cognitive constructions and expectations
Story: I attended an elderly student, who had suffered a massive heart attack and was taken to the emergency room near our Zen center. Hooked up to IVs, in the hush of a private space in the ER, she began to realize that she might be near death. As technicians stirred around her, she settled down into a quiet, open, and fearless state. She had been a child in Berlin during World War II and had vowed then to face death openly and with dignity. Those of us who sat with her in the ER listened in a respectful way to her concerns and also her courage. We could see the effect of her practice and her training. We also felt the ballast of our training in care of the dying as we sat with her through this crisis and gave our full and calm attention to her and to those who were attending her.
A few years later, my student was diagnosed with a fast-growing cancer. She died six days after receiving the final diagnosis, and again her quiet presence and acceptance astounded those of us who cared for her. We sat with her, listened, sat in attentive and compassionate silence when she lost her words. When she was told that nothing more could be done to help her, she simply dipped below the horizon and let go into the deep trough of peace. She went quickly, gracefully, her equanimity standing her in good stead. All of us who attended her had been through the BWD training. We were able to accept the truth of her situation and, at the same time, have a kind of compassionate optimism that that was not about her survival but the quality of life that we observed in our dying patient. We had the training to listen and to support her in silence. Her death was characterized by profound peace.
Nonjudgmental acceptance of self and patient:
Healthy balance between patient-oriented, clinician-oriented, and relationship-oriented goals
Sense of care-giving efﬁcacy
Appreciation of patient’s traits
Reduction in self-directed concerns
Fewer unrealistic expectations of patient
Story: Issan founded the Hartford Street Zen Center and the Maitri AIDS Hospice in the gay district of San Francisco. He had not been diagnosed as HIV-positive himself, but he believed it was crucial to offer help to his brothers dying all around him. Issan was a Buddhist who was deeply intimate with compassion. Through Issan’s work with dying people, I saw how Buddhism could function in a practical way for a community in crisis—a community that flourishes with compassion. At the hospice I didn’t feel piety. The practice there had been energized by the dross of suffering, not consumed by it.
Some years after the founding of the hospice, Issan was diagnosed with AIDS. We hoped he would live a long time, but as it turned out, he had only a few short years left inside him. As Issan’s health was declining, I came up from Southern California to visit him in the hospital. Although I have been at the bedside of many dying people, watching Issan die was not easy for me. He had been there for so many. He was a good friend and a role model. His life taught us all what it meant to be a true human being, present for another in such a way that any sense of “other” disappeared. Sometimes that disappearing was in laughter; sometimes it was in silence. Sometimes he looked with his eyes right into the heart of the matter.
Like so many others, I wanted my friend to continue to live. Thin and fragile, wrapped in a hospital gown, Issan was sitting up in bed in the late afternoon when I went to visit him maybe a month before he died. I sat on the side of his bed, and suddenly my face was wet with tears. Issan reached over to touch my hand. He looked at me and said, “It is not necessary.” Here the patient was not judging himself or me, nor in the end, did I judge him. I had profound appreciation for Issan’s courage and humor, wisdom and love. The feeling between us was not characterized by judgment but by respect and love, and by a deep sense of the reality of impermanence.
Emotional awareness of self and patient:
Responsiveness to patient’s needs and emotions
Greater accuracy in responsibility attributions
Less dismissing of patient’s or other caregivers’ emotions
Less withdrawal/abandonment resulting from negative emotions (e.g., anger, disappointment, shame, grief)
Story: The following is a letter from a physician, who was a participant in our professional training program for clinicians: “As with everything Steven did in his life, he went out fighting. By the last day, he required continuous oxygen. When his breathing became terribly labored (and long after he had become unresponsive), we turned off the oxygen. I fully expected him to pass in minutes. No, not Steven. Never the easy way out. He still labored, minutes turning into hours. Family and friends started reading poetry—Blake, Wordsworth—preparing for a night that seemed to have no end. At one point, I thought of co-meditation, but couldn’t imagine how I could do that. Too late now, I thought. Then, without any idea what I was doing, and with still no end in his agony in immediate sight, I began speaking into his ear, my forehead almost resting on his, my hand slowly rubbing his chest in soft circles, as I whispered to him to relax, to slow the breath down, to be easy. Within minutes his breathing pattern slowed, the labored quality going. A few minutes later, when it had slowed even more, the end clearly near, I called someone else over to take my place by his side, and with her now whispering in his ear, he died quietly, peacefully. A long, hard labor over. The night complete. A man reborn into another world.”
This good doctor had such resonance with his patient and such devotion. I know him well. His life was changed as a result of what he gave to his patient and what he learned from him.
Self-regulation in the caregiving relationship:
Emotion regulation in the caregiving context
Caregiving in accordance with goals and values
Less over-reactive, ‘‘automatic’’ reactions or withdrawal
Less dependence on other’s emotions
Story: I spent several years traveling back and forth to Seattle from Southern California to be with John and Kenny, both of whom had AIDS. John died first, and all our loving of him, all our holding of him, all the support offered to him, the listening, the presence, seemed to do little good. And yet, one doesn’t look for an outcome.
At the end, when John was actively dying, he could not believe he was actually going to die. Eventually he developed dementia. John died a hard death. I learned that sometimes all we can do is just be present. We are powerless to change the tide of suffering, dying, and death. And we, as caregivers, have to take care of ourselves along the way.
After his partner’s death, Kenny moved to a tiny room in a brownstone in the Bronx. Whenever I went to New York, I’d go to see him. Sitting by his bed, I would listen to his quiet request that I help him die. I could understand why Kenny wanted to take his life. It seemed to him that he had little to live for. He was alone most of the time in a tiny sweltering room in a desolate corner of New York with few visitors and little support. He had been abandoned by most of his friends. I knew from years in this work that withdrawing from one’s patients is not an uncommon experience. I did not want to do this.
I invited Kenny to move in with me, but he declined, saying he wanted to stay on the East Coast near his sister. In the end, I had very little to give Kenny except for presence. We meditated together, and we shared moments of deep peace. Then one evening Kenny said to me, “You know, it’s October now. In November, I’m going to my sister’s farm and will put myself on the earth and die.”
And that is exactly what he did. He chose the time of his death, and he took his own life. He took it peacefully, close to what he loved the most—the land he had tended since he was a child. I heard from those who were with him that it took him a long time for him to die, but that he was right there through all of it. As a good friend and caregiver, I found it challenging to support his decision. And yet, it was necessary to support his wish and autonomy, and I had to regulate my response to his situation, including his choice to take his own life, in order to keep on showing up for him.
Compassion for self and patient:
Affection in caregiver-patient and colleague relationships
More forgiving view of own caregiving efforts
Less compromised affect displayed in the caregiving relationship
Less self-blame when caregiving goals are not met
Story: An older woman asked that we support her as she was dying of a rare neurological disorder. After some months, she disclosed that she did not want to continue living with her rapidly decreasing capacities and her increasing pain. Over many months, we gently and firmly tried to find ways to offer her greater love and support. But she was determined to end her life.
She tried more than once to end her life but did not succeed. Each time she swallowed the pills, her partner would call 911 and a rescue team would arrive and resuscitate her. Her anger at these rescues went deep. She had been in a psychiatric institution as a young woman and felt profoundly angry that others were controlling her destiny. It was not a matter of love and reason being an intervention to end this cycle of misery. All the spiritual and practical issues meant nothing to her in the face of her history and her current suffering.
Our team reluctantly told her that we could not support her suicide, although we loved and respected her. We were legally bound to “call for help.” She and her partner agreed to not inform us or anyone if she attempted suicide again, and in this way, they would let things take their course. Knowing these two women, I imagine this was a hard decision; nor was ours an easy one. It was a process of being realistic and blameless.
One Wednesday morning, the phone rang. Our friend had attempted suicide. This time she was comatose and had entered a vegetative state. When her partner called me, she had been that way for four days. I immediately drove to her house to find her unconscious and completely chaotic; her breathing ragged; her body tossing about like flotsam in stormy waves. The hospice nurse and my assistant, who knew her well, asked that I spend some time alone with her. “She would want this,” they said. I sat down beside the bed and took her hands in mine. Her eyes were blank, her body twisting and sweating profusely. I began breathing with her, telling her that she was loved and that it was OK for her to let go. We breathed together, and gradually, almost imperceptibly, with me quietly saying “yes” on her out-breath, her breathing slowed and became lighter and lighter until, at last, she slipped away and was gone. Maybe this story illustrates what it means to do this work. Compassion is always the base, including compassion for one’s own limitations in the work.
This is the essence of CMC care, the ability to offer equanimity, compassion, mindfulness, and information in a balanced way where there is understanding and appreciation all around. Here is another story that illustrates what we try to bring to those near death.
Story: This is a short account of Matthew, who had been diagnosed with a brain tumor. When Matthew finally died of his cancer, he had already discussed his final wishes with his family and with me. This is a really important part of what we do as compassionate caregivers—we create an atmosphere of trust, courage, and compassion, where difficult subjects can be explored. In a family meeting with David, we had sat in council, and the question came up of how he wanted his body treated immediately after he died. I had shared with David and his family how we recommend that the body is cared for after death. He seemed to find this guidance helpful and made the request of his friends and family that this happen. Creating a situation of trust and ease in the midst of the drama around dying is really important. From this base, there can be greater balance and discernment—two features that are related to compassion.
I was not there the moment Matthew died. When I arrived to help twenty minutes after he had passed, I found a calm and very moving scene of loving care taking place. His partner was gently swabbing his mouth clean of mucus. His twin sister was holding his hand and thanking her brother for all she had learned from him. His closest friend and the hospice nurse, their arms around each other, softly prayed for him. No one was rushing around, lost in busyness and trying to avoid what had just happened. We were, in a very quiet and connected way, being with dying, and being with dying from a base of compassion.
To support CMC care, clinicians and caregivers need to value well-being, insight, compassion, and self-respect; recognize challenges and stress; commit to physical, emotional, mental, spiritual, and relational balance; and engage in strategies that support “best practices” with CMC care toward the dying, community, colleagues, and self, as a base. There are so many stories of why a CMC in the end-of-life care field is important. Here, I offer a final story to illustrate the how compassion forms a base for care of the dying:
Story: When Mary, who had lymphoma, came to see me, I was moved by her appearance. Because of chemotherapy, she had no hair, no eyebrows, no eyelashes. Flaring from her neck were huge tumors. Although her friends had told me Mary was in denial, I found her denial curiously radiant. In our first interview, she leaned toward me and said, “I am not going to die.” At that instant, I felt she spoke the truth.
When we cut through the illusion of ourselves as solid and separate entities, we may well come to the conclusion that nobody dies. One day, Mary’s network of friends—about twenty-five women in all—came together. We sat in council, and I asked the simple question, “What are you feeling?” They responded with suffering and frustration. I could not blame this circle of good-hearted women. Something was definitely not working for them. For one thing, it bothered them all that Mary was “in denial.” On another level, they had not quite gotten themselves organized, they felt demoralized, and their care for their friend was erratic. They seemed to be in a world apart from her, and at the same time they loved her and wanted to do their best for her as she was dying.
We listened deeply to each other and explored the question of denial and how Mary’s refusal to accept the imminence of her death could on some level be a reflection of her insight into deathlessness. I shared with them that this was a possibility that might free them to accept Mary’s attitude of denial. Mary’s friends could not ignore their shared fears and frustrations once they were spoken aloud. When they heard one another, they shifted to a position of compassion for themselves as well as to a greater understanding of their friend’s perspective on dying. We then set out to do the most practical thing, which was to make a schedule.
Over the ensuing weeks, it seemed as though everything went much more smoothly. People showed up at Mary’s on time and worked with accepting her just as she was. I also was part of the schedule and had the joy of sitting with her several times a week. She and I listened to music, sat in silence, and occasionally talked about simple spiritual issues.
Mary stayed in “denial” up until the moment of her death when she died peacefully. Her last words were, “I am not dying.”
It’s easy to consider denial as some kind of pathology. However, in being with dying, we simply do not know when it might be serving a positive or healing function. “The difficulty,” said philosopher Ludwig Wittgenstein, “is to realize the groundlessness of our believing.” This is truly not knowing. Deep down inside, we are all aware that we are going to die. If we activate the spirit of hope or wisdom through denial, as Mary did, that is our own business. In some situations, it can be of great help and bring peace into our lives. In Mary’s case, perhaps what we were calling “denial” was her knowledge that some part of her would never die. I did not know then, and now years later, I still cannot draw a conclusion. I only knew that my own practice and training had given me the grounding and openness to hold this woman’s life and death with respect and awe. §
Joan Halifax is a Buddhist teacher, Abbot and Founder of Upaya Zen Center, author, and social activist.