My mother died of cancer 10 years ago. The last week of her life was spent in the hospital. She was admitted on Thursday and died on Tuesday. Two mornings before she died, I arrived early to the hospital. It was not even 8am. I was heading towards my mother's hospital room, balancing two hot coffees, one for me and one for her, when I was intercepted by the young resident who was looking after her on the ward. I was sweating through my winter coat. My bag was still on my shoulders. The coffee was burning my hands.
He was anxious and jittery and unable to maintain eye contact. "The scans came back" he blurted out, looking towards the ceiling. "There are tumors in her brain which explains the confusion and hallucinations. I recommend we start radiation immediately."
This scene is shocking for many reasons. Putting aside the content of what he said, the delivery of this news and his conclusion were wildly inappropriate. First, this news should have been delivered with more privacy, compassion and sensitivity from someone we knew. Second, it was clear my mother was deteriorating; she could barely sit up in her hospital bed. More radiation would only cause more pain and suffering and would do nothing to extend her life.
My mother was a cancer patient for nearly 20 years. She received excellent medical care for the vast majority of that time. The last week of her life was more traumatic than anything she had gone through in the previous two decades and it continues to haunt me to this day. It does not have to be this way. Had we had a palliative care team involved in her care, she would have still died of her disease, but her death would have been more peaceful for all of us.
Palliative care focuses on the relief of symptoms, pain, and stress caused by serious illness by managing symptoms, providing clear information to patients and families, and by attending to the patient's physical, emotional, psychological and spiritual needs. Although palliative care is often mistakenly viewed as end of care, its actually meant to support patients and families throughout the treatment trajectory for cancer and other serious diseases.
Palliative care matters a lot. The evidence is clear that early integration of palliative care is associated with better quality of life for patients and families, increased days of living, better quality of life when in the dying process (i.e., reduced pain, feeling at peace, reduced symptoms of depression and anxiety etc.), and reduced healthcare costs. Despite these well- documented facts, it is still underdeveloped and underfunded in many places around the world.
For children who are sick and dying, the situation may be worse. The research shows that children with advanced cancer have many unmet physical symptoms (i.e., pain, fatigue, nausea etc.) and psychological needs (i.e., depression, anxiety etc.). Palliative care can also help families, and when relevant, teenagers, plan the end of their lives. Advance planning conversations are extremely important because they allow patients and families to make important decisions under calmer conditions rather than in the midst of an emergency.
No one likes to think about death. Especially the death of children. My own research looking at the emotional lives of doctors has been dedicated to making room for these difficult emotional responses at end of life in order to improve patient care. If doctors, patients, and families are better able to acknowledge and cope with the emotional distress that dying causes, we might also be better at making room for palliative care earlier in the disease trajectory, ultimately leading to better quality of life and a more peaceful death for everyone involved.
To be sure, the pain of loss never goes away. No matter how my mother died, I still ache for her. Even the most ideal death could not take that pain away. But the pain of grief that comes from losing those we love should not be compounded with the pain of how our loved ones died. This is precisely where palliative care can step in.
Luckily, things are slowly starting to turn. This year, the Institute of Medicine (IOM) put out a revolutionary report about improving quality of care at end of life for all Americans, including children. Despite these important advances, we still have a long way to go in ensuring that palliative care becomes a human right for all.