Physicians and family caregivers must find the courage and compassion to talk about dying before it’s too late.
I was with my mother and father when the oncologist told Mom the recommended course of treatment for lung cancer that had metastasized to her brain was “palliative, not curative.” Because we are a medical family (my father is a radiologist), we understood what the word “palliative” meant in this context, and there was no misunderstanding the meaning of “not curative.”
The cancer was terminal; it was going to kill my mother. Any treatments would relieve symptoms, but would not cure the disease.
Before we left the oncologist’s office, appointments for initial radiation therapy and chemotherapy sessions were made, and the overall course of treatments had been explained. But, in these anxiety-inducing and grief-filled moments when our family’s journey through incurable, terminal disease was beginning, not a word was said about the full spectrum and promise of palliative care or about the gift hospice would represent when the journey was coming to an end.
With the clarity of hindsight, I know now that this was a big missed opportunity.
My mother should have been referred for a palliative care consultation immediately after her diagnosis. Palliative care – to address not only her physical symptoms but also her emotional needs and goals, as well as those of her family – could have begun on day one. It would have made a tremendous difference. Throughout her illness, my mother suffered far more from emotional distress over the impact of her illness and death on the family she didn’t want to leave than she suffered from physical pain.
We also should have been informed right away about hospice care as a compassionate end-of-life option so that we could plan and prepare rather than wonder or worry. We might have embraced it sooner than we did, had we known it would so wonderfully mesh with and support not only my mother’s end-of-life wishes but also the quality-of-life goals that were of paramount importance to her.
Those who are seriously or terminally ill suffer existential pain that cannot be treated by chemo or radiation therapy, and their families suffer with them. Those who have experienced it know there is more to palliative care than treatment to relieve symptoms of disease. Families who are unaware of the holistic and compassionate goals of palliative care and hospice may not be allowed to reap their benefits. This saddens and upsets me.
The time to talk about end-of-life options and preferences is not when life is ending.
Yet far too often the conversation begins only then. Many patients and their families simply do not want to play the hand they’ve been dealt. Denying the reality of their diagnoses, terminally ill patients believe or are encouraged believe that if they “keep fighting” or try just one more medical intervention, they can beat the disease. For family caregivers, keeping someone alive, or wishing a terminally ill loved one would continue the chemotherapy that is making her feel too drained to enjoy the time that remains, is often a very selfish decision. We desperately don’t want to lose our loved ones.
I believe a bigger cause of the denial epidemic can be found in the medical community. Increasingly, physicians themselves are publicly acknowledging that too many doctors are still too reluctant to refer patients to hospice care even when they know the patient can’t be cured and faces death within six months. Because too many doctors still think of death or the inability to cure as a personal failure, too many deny dying patients and their families the chance to experience the full benefits and gifts of hospice. Because too few people know what hospice is, and too many believe it is something it isn’t, not enough are asking for it if their physicians don’t suggest it.
Yes, it is difficult to accept mortality and talk about dying, but we must.
The conversation needs to start much sooner. And it needs to be initiated, far more frequently than it is today, by physicians who muster the courage and compassion to be forthcoming and honest, even – or especially – when the news is very bad and the options not much better.
If we are not talking about death, then we are not preparing for it either. And if it hasn’t been talked about, then the default plan likely will be more heroic but ultimately futile steps to extend life at all costs. Too often, the costs far outweigh any benefit, especially if measured in terms of quality of life.
I am a daughter whose terminally ill mother made it clear quality of life, not quantity, was the end game. Her family was able to respect her wishes, with the help of a hospice team that guided us on our heart-wrenching journey and made the unbearable bearable – for Mom and for loved ones. I am a daughter who felt enormous gratitude, and not a shred of guilt, when her mother took her last breath. We had given her a good death.
by Linda Campanella
Linda Campanella is the author of a Nautilus Award-winning memoir about love and loss, family and faith, hope and hospice, grief and gratitude: When All That’s Left of Me is Love: A Daughter’s Story of Letting Go.