Articles written by me on Self-care and Palliative Medicine
On Self-Care & Palliative Medicine

Reframing Hope

Reframing Hope

One of the most common reasons doctors give for withholding bad news to a patient or a patient’s family (especially if it’s news about a life-limiting illness) is, “I don’t want them to lose hope,” or “I don’t want to destroy hope.”

Interestingly, studies and interviews with patients and their families don’t show that truthful information about poor prognosis, worsening disease, or failure of treatments destroys hope, especially if the truth is delivered in a compassionate and stepwise fashion. What’s behind doctors’ reluctance, and why isn’t hope destroyed? Let’s examine both of these questions.

Although several factors generate this reluctance, I propose that a misconception about the architecture of hope is a primary factor.

In 2012, my concept of hope was forever changed after attending a lecture by Dr. Chris Feudtner on this topic. Dr. Feudtner is a pediatrician, a palliative care physician, and the Director of the Department of Medical Ethics at Children’s Hospital of Philadelphia. I’m sharing several core concepts and quotes from one of his writings, The Breadth of Hopes (NEJM, 361;24, Dec 10, 2009) in my article today.

For most of us, hope can be a singular, expansive, and rather ill defined concept. Feeling hopeful in a broad and unstructured sense is an example of such a nebulous idea of hope. However, Feudtner points out that in contrast to this broad umbrella of hope, we also have a number of specific hopes; these smaller, more discrete hopes can provide both motivation and direction toward a desired goal.

A singular expansive hope may be to live a long, healthy, and happy life.  What happens when the fabric of this grand hope begins to unravel in the development of a serious, life-limiting illness? Often, specific discrete hopes remain, and even new hopes are created. Examples of more specific hopes are to alleviate pain, to be home, to continue to have pleasurable experiences, to lessen burdens on family and caregivers, and to have emotional and spiritual peace.

To be sure, hearing that an illness can’t be cured is painful. As Feudtner states, “For some time after such news is shared, the act of hoping strains under its load, and people suffer.” However, he suggests that after an appropriate pause to allow patients to assimilate this new information, an important role of clinicians is to help “illuminate the hopes that remain.” A patient’s unique goals of care will be the building blocks for such hopes.

In these conversations, physicians and patients nurture the remaining collection of diverse hopes. In Feudtner’s words, “This breadth of hopes, ranging from the miraculous to the mundane, reveals the internal architecture of hope…. Even in the midst of heartache, focusing on specific hopes provides invaluable, orienting points of reference for sustaining hopeful engagement with the future.”

A second factor contributing to clinicians’ reluctance to give bad news is human nature. Nobody wants to give another person bad news. Heartbreak and intense emotional suffering can occur when one’s hopes for a complete cure disintegrate with a doctor’s pronouncement of a dismal prognosis.

Interestingly, studies suggest that the longer a physician knows a patient, the less accurate they become in predicting end of life. There’s no attempt to deceive here, but rather a genuine hope with the patient that the news might be better than it is. The phenomenon is called “optimistic bias”; it’s human nature to want someone you know and care about to do well.

Limited training in communication skills during medical school and postgraduate years is a third factor contributing to physicians’ reluctance to deliver bad news. Major blocks of time in medical education are allocated to teaching diagnosis and treatment of disease. Very little time is devoted to honing communication skills, especially the delivery of bad news.

With our extensive arsenal of potions, pills, and treatment regimens, modern physicians enter the medical workforce confident that we can successfully treat pretty much anything! When treatments fail and patients get sicker despite our best efforts, we quickly find ourselves out of our comfort zones.

Despite reluctance, clinicians have an ethical obligation to provide patients with truthful information about illness—its stages, treatment options, and the likelihood of treatment success or failure. To give patients false hope and/or intentionally withhold important information on prognosis might jeopardize a patient’s ability to plan realistically, and to reframe expectations about both quality of life and length of life ahead.

Delivering honest information about progression of disease and remaining treatment options allows patients to reframe hopes, to make realistic plans for gatherings, to initiate crucial communication with loved ones, to create wills, to take part in planning their own memorial services— in essence, to say “goodbye” on their own terms. If a special pilgrimage, attending a marriage or a Baptism, or a reunion with cherished friends and family is important to someone with significant life-limiting illness, the timing of such events might possibly be accelerated to allow such participation and witness.

There’s a brief but powerful phrase in palliative care, “Plan for the worst and hope for the best.” Healthcare providers and their patients need to share information and plan together. By taking time to hear the full extent of a patient’s hopes, clinicians honor these hopes with their witness, even when medical assistance may not be possible for all of them.

Feudtner muses, “What happens if we shift away from the monolithic vision of hope and toward the proposition that hope in the big sense is actually composed of multiple hopes in the smaller sense?”

What happens is an understanding of why hope isn’t destroyed by bad news. Because, while some broad, far-reaching hopes may be dashed, specific hopes for a high-quality life remain.

In closing, I reflect on the words of Leonard Cohen, in his song, Anthem, whose refrain is, “There’s a crack in everything, that’s how the light gets in.” When we, as clinicians, crack the hope of cure, there is certainly pain and grieving for a lost future. However, an opening, an enlightenment, is also created by the crack. Such truth gives power to patients as they reassess priorities and examine plans through a refined lens.

 

Stephen L Hines, MD

January 2017

 

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