That’s how the light gets in

As physicians, we follow the axiom “cure sometimes, relieve often, comfort always.” But what is comfort? How do we help people to heal even as they are dying? We must listen, but we can also offer more. I have altered names and details in a story that happened 20 years ago.Darren sat on the edge of his hospital bed with his head in his hands. If I had seen him sitting in a bar with friends, I would have seen him as a healthy looking, groomed young man in his early 30s. Looking closer would reveal that his eyes wandered, unconnected to his brain. And walking required assistance, not because of blindness, but because of poor equilibrium and coordination that made him roll and pitch like a sailor on high seas. It started eight years ago with innocuous troubles with his vision and mild headaches. At his first visit with his surgeon, he was told, “If you’re going to have a tumour in your head, a meningioma is the best one to have.” I winced in recognition of his being given false expectations, but also from remembrance of my own mistakes, born from hope for someone else. After the surgery, he learned it was a grade two meningioma, atypical—and had potential for regrowth. Also, surgery did not achieve complete resection because of its location in the base of his brain. He had radiotherapy and then a few months of normal life.Regrowth of the tumour slowly eroded his independence. He could no longer see—and smell was only a memory. Walking alone was impossible, and he could no longer make progress without someone by his side. He rarely left the apartment over the last months. Repeated scans marked the slow encroachment of the tumour on his senses and vital functions. His world had contracted and shriveled, but the last year was the worst. He woke, ate, listened to music, talked to friends, ate again and went to bed. Amazingly, Greg had not left him. He and Greg met at work when the tumour was causing subtle symptoms and was mostly a thing he could hide. They fell in love and moved in together. Greg accepted him despite his tumour, although neither of them knew it would end up like this. Greg said he still loved him, though he did not understand why, since he had become so miserable and helpless within his contracting world. He dreaded Greg leaving him and yet felt a horrid burden on him. This is something he and Greg never discussed.The last scan three months ago showed the tumour in his head gradually crushing the brain stem. The doctor said it would kill him one day because it would press on the breathing center. He was beginning to look forward to death. He felt trapped in a dark cave with water seeping in and filling the space. He and Greg had talked about his dying, but it was an awkward conversation with no guidance or support. Darren thought Greg had understood his feelings and was prepared to let go. Not so. Two days ago, during his sleep, he was struggling to breathe and pausing for a long time between breaths. Greg panicked and called 911. The paramedics did their job and put a tube down his throat. The emergency doctor gave him dexamethasone to shrink the swelling around the tumour. And now, here he was in hospital. The door to escape this hell was open, but Greg had pulled him back and he felt betrayed. “Now look at me. I can’t even damn well die! I don’t know what to think. I am so damn angry at him. Well not really . . .. But now I have to die again—when I did not even want to live.”Darren and Greg were failed by our healthcare system. Why were they left alone to cope with this huge burden? Was the old story of doctors waiting until they were certain that he was dying before involving palliative care? Was it no coordination between primary care and specialty? Access to palliative care should depend on needs and not prognosis. I could see so many lost opportunities to help this couple: discussing whether Darren was a burden to Greg (likely not), helping Darren and Greg to know what dying would look like and how to respond, and most of all supporting Darren to continue to live and find meaning in life while dying. It needs saying again: palliative care is about living, not dying. Anyone living with a life-threatening illness can benefit from the extra layer of support.Darren was in unfamiliar territory now. No one could know how long the steroid would hold off the tumour. How could I improve the quality of his life for whatever time he had? I looked around the barren hospital room for inspiration. Walls of fake wood paneling and empty connections for oxygen and air stared back at me, reflecting technology’s inadequacy for this moment.We discussed symptoms. He had lots of physical signs (low vision, poor balance, no smell) but there was nothing I could do to restore these. Really, he had minimal physical symptoms to address since his headaches were mild due to a slow-growing tumour. He did not seem depressed, as he still found pleasure in music or talking with friends when they called or visited. It was clear his diminishing function caused a feeling of failure. He could see no hope and no point in continuing his day-to-day existence. Although I conveyed empathy for his intense, enduring suffering, it was not enough. Showing compassion involves more than empathy; it also involves taking action to alleviate the suffering.What I had observed in some others with serious illnesses was their amazing resilience. They shifted their focus from their losses to their remaining strengths and how illness had enhanced them. By looking through the rubble of their old life, they could pull out elements from which they could shape a new realistic, but meaningful, life. The windows faced the mountains. “Darren, I have met others who are also suffering terribly like you . . . and sometimes they tell me that there is something . . . good or positive that came out of their illness. I wonder if there is anything . . . at all . . . that has come from all your suffering over the last months and years.” I expected an angry outburst—and would have understood. I got silence and then slowly, an answer.“When I came out to my family at 18, my father asked me to leave the house. My mother was upset, but didn’t overrule dad. I left to go to college and didn’t see either of them for years. . . . Even when my tumour was diagnosed, she didn’t speak to me. But as the tumour has grown worse, my mother and I have grown back together.”I allowed myself to breathe. “Tell me more . . .”“My sister was the link between my mom and me during the years we didn’t speak to each other. She lives in the same city as my mom. My sister would call occasionally and when she came out here, she would visit me. She must have told my mom about what was happening to me. I never discussed mom—I wanted to forget . . .. My Dad died years ago. Yeah . . . I guess we have really got back together again. She calls me every few days to ask me how I am, and she speaks to Greg and tries to help him.”This was something we could work with. It is hard to turn emotional suffering into something less agonizing. But if there is even a small crack of light that gets into the darkness—that crack can be opened and amplified. After getting his permission to contact his sister, I spoke to our team members who got to work.His sister flew in the next day. The siblings, supported by a nurse and spiritual care practitioner, reflected on their enduring relationship and their mother's eventual acceptance of him. Greg was supported to talk about his fear of Darren’s dying and the privilege it had been to care for him. Our team provided information about the natural process of dying and how our medical system could respond to support Greg if he needed it. His mother's arrival sparked a conversation that delved into painful parts of their lives, emphasizing forgiveness and healing.He had shown no signs of breathing compromise in hospital, so we began planning for going home. “If I get more time, maybe I could go on a trip with my sister and mother. Who knows what will happen?”Darren went home with Greg, deciding he would focus on living instead of waiting to die. He knew he had to die again, but he now could hold two possibilities in his mind—living meaningfully, while dying. The suffering was still there, but now the focus was the light shone on relationships and the ability of his spirit to make meaning from something dreadful. Darren died during the night, 10 days later. He left Greg sleeping by his side.Twenty years on, I recognize Darren was having intense existential suffering in the months he spent at home with a heavy disease burden and inadequate support. It takes a lot of inner work to arrive at the end of life with a sense of acceptance, meaning, personal growth and connectedness to others. When people face the mysteries of life and death without the lessons of aging and without adequate support, it can cause fear, dread, guilt, and a feeling of incompetence. A sense of defeat leads to a feeling of loss of control and a sense of entrapment. People in this state believe the only way out of the current suffering is death. Psychiatrists call this entrapment a key element causing suicidal thoughts to advance to attempts. Our team supported reframing Darren’s understanding from losses to strengths, failure to forgiveness and love, and facilitated connection with those who gave meaning to his life. Darren’s story read like someone at risk for depression. Don't dismiss it as merely a part of the dying process. Although 15% to 50% of people with cancer experience depressive symptoms, only 5% to 20% meet the diagnostic criteria for major depressive disorder. The diagnostic criteria for depression overlap with many of the symptoms of advanced illness. However, the PDQ-2 and PDQ-9 are short screening tests that can help you rule this out. While Darren felt depressed, and didn’t initiate any activities that would give him pleasure, he was enjoying the company of Greg and calls from his sister, mother and other friends. Thus, his anhedonia came from a sense of incompetence and failure rather from a lack of motivation as it does in depression.Many people with these symptoms meet the criteria of an existential psychosocial syndrome called demoralization—a mental state of lowered morale and poor coping, characterized by feelings of hopelessness, helplessness, loss of meaning and loss of purpose in life. The Psycho Existential Symptom Assessment Scale (PeSAS) is an 11-point scale defined as absent=0, mild1-3, moderate 4-7 and severe ≥8, with moderate and severe categories representing clinically significant intensities of suffering. The main therapy for demoralization is first improving the symptom burden of the illness by addressing physical symptoms. Psychotherapy focusing on restoring meaning, purpose and hope is the major therapy. Demoralization, if not addressed, can lead to depression, hopelessness and desire for death. We now have evidence-based therapies such as dignity therapy, cognitive behavioural therapy, psychosocial oncology therapies and a variety of therapies and supportive actions to enhance meaning and reframe hope. Addressing existential suffering needs to start early in the illness and not be left spread like a bacteremia seeds the rest of the body resulting in sepsis. Listen for clues to existential suffering in people’s conversation. The tone is hopeless, and the theme is personal failure, regrets and guilt. “Look at me. I can’t even die now” or “I’m a huge burden to my family,” or “I can’t do anything.” Darren did not reach out to anyone, as he felt a failure and burden and his loved ones did not have the benefit of a knowledgeable facilitator that quality palliative care can provide, until it was almost too late. Greg, Darren, his mother and sister all felt that the last days were a gift. Love, forgiveness, happiness, sadness were driving the conversation with despair, helplessness and guilt now in the back seat. Psychological research has shown that what we remember from an important life event is the beginning, the peak (wonderful or terrible) and the end. So, for Darren’s loved ones, his last days will be the memory that influences their own and other’s future illness and suffering. Darren’s openness to finding a way through his suffering was a beautiful legacy.Did Darren’s last days make up for the many days of feeling a burden and suffering loss after loss? For many patients, the experience of love, giving and receiving forgiveness and meaning, is reason enough to stay alive. We can facilitate our patients to see a crack—hopefully they will open it as an opportunity for healing.Dr. Romayne Gallagher is clinically retired from her career as a palliative care physician at an academic hospital in Vancouver (Providence Health Care). She is a board member of the Canadian Society of Palliative Medicine.

That’s how the light gets in

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