Holding Onto Hope When a Medical Prognosis is Grim
Hope isn’t delusional-- it’s a coping strategy that aids adjustment & adaptation
Posted Dec 30, 2014
And herein lies the magic. Hope is a positive frame of mind that makes us feel optimistic, ambitious, confident, aspiring, and resilient. To be hopeful is to have faith that everything will turn out okay in the end.
Hope can serve us well throughout the year as we face life’s trials and tribulations. But too often, especially when people are facing a devastating medical diagnosis with a grim prognosis, whether we are a friend or a health care practitioner, we are quick to want folks to face reality. Here are some examples I’ve run across in just the past month:
Oscar, a spry 95-year-old, had a recent heart attack and now requires supplemental oxygen through a nasal cannula and, due to his unsteadiness, a wheelchair. He has been diagnosed with congestive heart failure and is under doctor’s orders not to drive anymore. An automobile lover all his life, he has since taken delivery of a new car, as planned earlier this year, with the idea that one day, he’ll be able to drive it. His doctor and his friends tried to talk him out of this extravagant purchase, believing that he’s unlikely to improve, and they discourage his looking forward to this presumably unrealistic goal.
What do Glen and Carol, Oscar, and Sophie and Michael have in common? Hope. Is it unrealistic? Probably. Is it adaptive? You bet.
Denying Reality; Reaching for Miracles
We’ve all heard the stories of persistent people who defy the odds of their diagnosis. We’ve heard reports of miracle cures and miraculous recoveries. We live in a "miracle culture" where 8 in 10 people believe in miracles, and about 1 in 5 believe that a strong enough faith in God can undo a poor prognosis. As a result, many patients feel abandoned when their doctors hold out no hope. And yet health care practitioners know that those "miracles" are the rare and exceptional cases, often due to misdiagnosis or simply beating the odds. It's common for them to be concerned about any patient or family that seems to outright ignore the dire reality. And if you're a friend, you might worry about a loved one who refuses to face reality and clings to false hopes, quack remedies, and empty promises.
Holding Onto Hope as a Coping Strategy
The Value of “Wait and See”
It’s also important to remember that not every prognosis, or even diagnosis, is correct. There are no crystal balls and sometimes, medical opinions are proven wrong. Then what? If you’ve only focused on the gloom and doom, you’ll be left behind in a cloud of dust. Particularly with prenatal diagnoses, it's very difficult to know exactly what's going on with a baby until the baby is born. Sometimes babies do much better than anticipated, and it's far better for the parents to be prepared for the possibility that their baby might go home with hospice care, not just die quickly in the delivery room. Better for them to know this ahead of time, and better for your relationship with them. As such, perinatal hospice and palliative care includes helping parents consider the alternatives and remote possibilities all along. And then if the prognosis isn't as dire as expected, having been hopeful too, you can celebrate with the family, instead of "being wrong".
So, what if the prognosis is right, and Justin never talks or walks unaided again? What if Oscar is never able to drive that new car? What if Sophie and Michael’s baby dies within an hour after birth? Will these folks ever recover?
Part of adjusting to great loss is gradually letting go of what was or what might have been, and accepting what is. And even when a grim prognosis is borne out, hope still doesn’t disappear-- it just changes direction.
Oscar can shift from hoping he’ll drive again to hoping he can remain independent in other ways, such as continuing to live in his own home.
Sophie and Michael can shift from hoping for their baby will live a long life to hoping their baby will live a life, however brief, filled with love.
Hope is powerful medicine. Hold onto hope with your patients & families or your stricken friend. As they journey, be a hopeful companion as well as a link to the apparent realities.
This blog post was inspired by the work of Kathie Kobler, MS, APN, and Patrick Jones, MD, whose sessions I attended at the 2014 International Perinatal Bereavement Conference.