Cancer kills mothers. This truth is as startling as it is mundane. So I feel compelled to review a remarkable grief memoir by Meghan O'Rourke, a 33-year-old journalist whose mother died of cancer. In The Long Goodbye, her vantage offers insights about compassion in the care of all patients as they approach that final doctor's visit.
O'Rourke provides a minimalist outline of her mother's illness—diagnosis, treatment, remission, recurrence, and dying. She demonstrates her artistry by splaying the emotional chaos that defines her singular grief, while unobtrusively weaving seminal theories and schools of thought regarding mourning.
In contrast to the five stages offered by Kübler-Ross, O'Rourke asserts that grief is “not monolithic; it's personal and variable.” Neither is it rational or linear; rather, it is a stress reaction experienced in waves and accompanied by physiological changes.
O'Rourke's experiences illustrate common psychological phenomena, such as how the death of a loved one feels sudden, even if long awaited. Mourners may become superstitious for the first time, looking for signs from the great beyond. Such seemingly irrational thoughts and feelings can disrupt the mourner's equilibrium and sense of self as a mature, sane adult, which adds to any sense of impotence and vulnerability and increases the risk of loneliness.
Importantly, intense unpleasant feelings that persist for months or longer may reflect not only the pain of separation from the deceased, but also the grief of unexpectedly losing someone else: the person the mourner got to be when the loved one was alive.
The Healing Power of Purpose
For people who perceive grief as the price one pays for having loved and lost, their pain can feel fruitless and punishing. To attach meaning (purpose) to this suffering is to offer a lifeline.
Analogous to pulling a rotted tooth, grief is a painful process with a purpose. Experiencing and expressing grief is how human beings integrate their great loss into everyday life so that, ultimately, they can embrace life again. In most cases, embracing life-without-this-loved-one becomes possible only after letting go—usually in fits and spurts—and accepting the loss intellectually and emotionally.
Throughout survivorship, hopeful acceptance can help patients deal with uncertainty. In prior “View” columns, I've discussed some of the benefits of hopeful acceptance when treatment options are exhausted. The Long Goodbye opened my eyes to an additional benefit: Empowering the terminally ill to help those they will soon leave behind.
Holly Prigerson, PhD, Director of the Center for Psychosocial Oncology and Palliative Care Research at Dana-Farber Cancer Institute, explains, “When a terminally ill patient ‘accepts’ her death, the bereaved typically find their grief more manageable than when in ‘despair.’”
That last sentence stopped me in my tracks the first time I read it. Since my diagnosis, my number one concern has been my children: What can I do to help them now?
When my time comes, my answer will be to strive to accept my fate gracefully. I say “strive” because, as O'Rourke says, “Acceptance isn't necessarily something you can choose off a menu, like eggs instead of French toast.” Some people are wired for relinquishing hope and accepting death with dignity. Others, for sinking deep into despair. Most find themselves somewhere in the middle.
The Clinician's Role
Clinicians' words can harm or heal patients—and patients' loved ones.
O'Rourke describes the sting of a consultant's rebuke (“No, absolutely not”) when her mother asks if she could drive. A compassionate response acknowledges the enormity of this loss, yet one more little death that precedes dying. I suggest, “I know this loss is especially upsetting. For now, not driving is the right thing to do for everyone's sake.”
O'Rourke confides her reaction to her mother's uncharacteristic belligerence. “[My mother's] anger was so vivid, it was easy to believe this was the unmasked truth: She was dying, and she hated us….In all my various imaginings of the awful end I knew was to come, I had never pictured an estrangement such as this.”
O'Rourke's emotional pain might have been mitigated had the doctors or nurses taken her aside and stated the obvious: “The disease is totally responsible for this behavior. Your mother is not choosing this or letting it happen. Try not to take it personally.”
It's not that O'Rourke didn't already know that. She did. But sometimes it takes hearing the obvious truth from a medical authority to quash the ramblings of a tired, stressed, and grieving mind.
When O'Rourke makes an astute observation about her family (“We had the same injury and different symptoms.”), she suggests another way clinicians can help patients nearing the end of life—namely, helping their loved ones stick together. When updating the family, clinicians can add one or two sentences to remind everyone that each of us experiences a crisis in our own unique way and that even the most loving family members often have difficulty comforting one another.
The Long Goodbye
Intertwined with the emotional pain of a lingering death are the benefits of a long goodbye. O'Rourke encourages clinicians to embrace the opportunities for compassion, many of which revolve around helping patients' families.
Reassure your patients that you'll explain clearly to their family members that the medicines failed, and the patient has not failed anyone.
Teach your patients about hopeful acceptance, an outlook that encourages them to make wise choices about end-of-life care. And reassure them that you will respect their wishes and advocate for them to their families, whatever they decide.
For patients who want to fight death to the last breath, you help them by explaining to their family that love means supporting the patient's choice at the end of life, even if they don't agree—and even if it hurts them.
The Long Goodbye reminds us that to care for patients at the end of life is to “be touched by the ineluctably real.” Compassion helps patients live until they die and fosters the healing power of grief for patients, their families, and everyone who cares for them.