For many people, this is a magical time of year dominated by celebrations, religious and secular. What do these celebrations have in common? They embody hope. Hope for peace and goodwill. Hope for salvation of humankind. Hope for miracles and light. Hope for a prosperous New Year.
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:
Glen and Carol’s son, Justin, is a college sophomore who had too much to drink at a fraternity party and fell from a second story balcony, landing headfirst on a concrete sidewalk. He was in a coma for over a month, and now lives in a head-injury rehabilitation center where he receives intensive speech, physical, and occupational therapies. Glen and Carol expect their son to fully recover, and encourage him accordingly. His doctors predict he’ll never be able to live independently, much less return to school. They keep trying to convince Glen and Carol of this poor prognosis, and wonder why these parents can’t face reality. Friends wonder when they’ll wake up and smell the coffee.
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.
Sophie and Michael are pregnant with their first child. At 20 weeks gestation, they received the devastating news that their baby has a life-limiting genetic condition and will likely die within days after birth, if not before. The parents remain optimistic that their baby will be born alive and do well enough to come home for a time, perhaps many years. Their doctors keep trying to dispel them of these notions, and worry that their wishful thinking isn’t preparing them for their baby’s likely quick death. Friends are urging them to “just terminate the pregnancy” so they can move on sooner and try having a healthy baby.
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.
Indeed, part of a doctor’s job is to inform patients and families of harsh realities and probabilities. Part of a friend’s role is to help loved ones face adversity. But what if a patient or family is disbelieving, clinging to unrealistic expectations, and hoping for miracles? If they remain in denial, how will they be prepared for what’s coming down the pike? If they’re delusional, how can they make sound decisions? Whether you’re a health care practitioner or a friend, you may find yourself focusing only on bad news and worst-case scenarios in an attempt to snap them out of their wishful thinking. But wishful thinking is a coping mechanism. So are delusions, denial, unrealistic expectations, and reaching for miracles—all are ways of holding onto hope.
Holding Onto Hope as a Coping Strategy
It’s important to remember that people need time and emotional support to adjust to bad news, and holding onto hope is a coping strategy that keeps them from being overwhelmed by the enormity of what they face. They don’t benefit when well-meaning doctors or friends keep harping on imminent gloom and doom. They do benefit from being given time to adjust and they need to follow their unique timetable. In fact, research shows that families do hold onto hard facts and statistics even as they focus on their hopes. They "get it" and remain hopeful. If you’re a health care practitioner, you can hope along with them. Follow a patient’s and family’s lead by listening, answering questions, and letting them know you’re available to support them as they determine next steps. If you’re a friend, you can listen to their hopes and dreams and support them in identifying their priorities and striving toward their goals. This is their journey, and you can be respectful of their process.
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".
When you’re with someone dealing with a medical crisis, take an approach of “wait and see”. Just as they do, you can hold in one hand the available evidence and likely outcome, and hold in the other hand the hope that the diagnosis or prognosis is wrong. Doing so allows you to walk with people on their precarious journeys of parenting this child or overcoming that illness, where holding onto hope is what helps them put one foot in front of the other. Have compassion as they struggle to adjust to life-altering news, grapple with the terrible possibilities, and deal with painful emotions. Resist making sure they understand and accept the prognosis now, and instead allow them to gradually understand and accept at their own pace, however long that might take. Pushing them to "get a grip on reality" will likely only result in them pushing back. You may worry that they are in denial, living a fantasy, seeking a miracle, or clinging to unrealistic expectations. But reality has a way of sinking in when it becomes clear that a treatment isn't working or the harm outweighs the benefits. Over time and without pressure, people can gradually adjust their goals. Just wait and see. And trust the process.
Hope Changes Direction
Hope Changes Direction
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.
Glen and Carol can gradually shift from hoping their son will fully recover to hoping that he will adjust to his condition and live a full life.
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.