November 26, 2018: Finding Hope in Heart Failure

If a man die, it is because death

has first possessed his imagination. 

 (William Carlos Williams, poet & physician)

I’ve been thinking about hope lately.  It dominates the conversation my husband and I have been having since his cancer diagnosis and surgery, intensified now by the possibility of his participation in a clinical trial of a new immunotherapy combination.  We weigh the statistics for a possible recurrence against the possibility of his living longer, perhaps cancer free and then we’re sobered by the list of potential side effects of the treatment, some that are serious and possibly permanent.  Still we hope, just the cancer patients who join my writing groups do.  The hope for a cure to cancer is never far from their minds, to hear the words, “cancer free” or at the very least, be granted a period of remission.

Yet the hope they have during their cancer treatments is in sharp contrast to being diagnosed with heart failure, a condition which has no cure and brings with it the expectation of worsening heart function over time.  I’ve thought about how, as a heart failure patient, my hope is modest by comparison.  It is buoyed by things like a change in medication that might lessen the strain on my weakened heart or the continuing vigilance of my ICD to manage any episodes of atrial fibrillation or ventricular tachycardia.  But the knowledge of heart failure’s trajectory, a slow downward progression, is never far from my consciousness, and for now, at least, there is no possibility of a cure on the horizon.

Despite advances achieved in medical management, HF continues to present challenges in hospitalization, morbidity and mortality rates. Varying with the severity of the disease and the underlying etiology of HF, the illness trajectory can be a rapid downward spiral with no hope of cure.  (Rustoen T, et al., “Hope in patients hospitalized with heart failure.” Amer J Crit Care. 2005;14(4):417–425)

As early as 1986, a study conducted in a Canadian heart failure clinic examined hope among heart failure patients, noting that while “substantive articles were found in the nursing literature examining the concept of hope with terminal and critical illness, cancer, HIV/AIDS, spinal cord injuries, and the homeless…, there is a paucity of data about the construct of hope in people with HF over the past two decades.”   The study was the first to examine hope in adults with HF, and the researchers found that adults who maintained “life involvement” despite the increasing physical limitations experienced as heart failure patients, were also the most hopeful.  (Rideoout E, et al.,  “Hope, morale and adaptation in patients with chronic heart failure.” J Adv Nurs. 1986;11(4):429–38)

Their findings were echoed  in a 2005 study of hope among hospitalized heart failure patients as the researchers concluded that “Adaptation to a life-threatening illness may induce a “response shift” that causes such patients to have more hope than the general population… How the patients judged their health and expressed satisfaction with their lives influenced their hope.  (American Journal of Critical Care. 2005;14:417-425)

Hope is something we all need at different and difficult times in our lives.  It plays a major role in our emotional and physical healing, whether from tragedy, loss or serious illness.  Siddhartha Mukherjee, physician and author of the Pulitzer Prize winning The Emperor of All Maladies:  A Biography of Cancer (2011) defined hope as a “vital organ.” It gives cancer patients added life force, and in the world of serious illness,  loss or suffering, hope may be one of the most powerful medicines we possess.

Despite the severity of heart failure and its growing incidence around the world, we are not without hope. There are numerous strategies to help people with heart failure live well, live longer and, in the future, even have success preventing heart failure in the first place, or preventing its progression and complications.  Indeed, with advances in regenerative medicine, there may even come a day when damaged and dysfunctional hearts can be rejuvenated and restored.  —Ted Rogers Centre for Heart Research

What is hope?  It’s an expectation that something good can happen in the future—and in the midst of suffering or sorrow, we sometimes forget that hope can be present in many different aspects of  our lives.  Anne LaMott’s 2013 book, Stitches: A Handbook on Meaning, Hope, and Repair, illustrates how hope exists–even in a world punctuated by vitriolic political discourse, frequent reports of random shootings, car bombs, wars, natural disasters, hunger or life-threatening disease. ” Hope is a conversation,” LaMott states.  “What allows us to go on and find those small moments of goodness, are to be found in “attention, creation, love, and,” she adds with incomparable wit, “dessert.”

With hope, there is healing, something that is often simplified in the way we think of it.  It’s more than medicine and treatments.  Healing, in the truest sense of the word, is the process of “becoming whole,” whether from a natural disaster or a serious, even life threatening illness.  It is a multi-faceted process of transformation.  There is a strong connection of mind and body in healing, and hope plays a central role.  In the studies that have explored the impact of hope, researchers conclude that hope helps decrease patient anxiety and increases quality of life. Even among the terminally ill, hope is an essential resource.  It helps us cope during times of intense physical and psychological distress.

“The very least you can do in your life is figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under its roof.” 
― Barbara Kingsolver, Animal Dreams 1990

What gives me hope?  Living as fully and as presently as I can.  It’s in those times I stop and remember the “small moments of goodness” in my life, things that raise my sagging spirits after another round of tests in the cardiac clinic or in the discussions of next steps in my husband’s cancer treatment.  Hope sometimes seems elusive until I experience the little “desserts” in my life that LaMott describes: a hug from a grandchild, dancing (badly) and laughing each week with “The Vintage Dancers,” singing together with a random crowd of people at an evening of “Choir! Choir! Choir!” or walking with my dog through the park and watching her unflagging hope of catching a squirrel (she never does, but her hope is never diminished).  In those moments, my own hope expands, and I’m reminded of the resilience of the human spirit, even my own.  Perhaps that’s why we often say that “hope springs eternal.”

 

HOPE

Hope

is the belief

that one hand

reaching to another

can eventually

touch the moon,

allowing the light

to guide us

through the night.

(By Nicolas Mazza, Editor, Journal of Poetry Therapy)

 

Writing Suggestions:

  • Explore what  hope is in your experience of  living with heart failure:
    • Where do you find hope?
    • What gives you hope?
    • What weakens it?
    • What do you hope for?

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