How Hope Can Cause Harm at the End of Life

(The author is a retired hospice physician and author of the book, 7 Lessons for Living from the Dying. She is the host of the popular podcast End-of-Life University and a frequent speaker at conferences on end-of-life issues. – Jay Niver, editor)

What is hope? Is it something you feel? Or do? Or possess? While we may struggle to clearly define hope, we know that it has great importance for our existence. Fyodor Dostoevsky wrote: “To live without hope is to cease to live.” Studies have shown that experiencing hope can decrease stress and anxiety, help us cope with adversity, and improve our physical health and happiness.

Hope can mean different things to different people depending on the situation. It seems reasonable that our concept of hope should naturally evolve over time as our life circumstances shift and change. But within the realm of medicine, hope has been statically fixated since the 1950s on medical science and its ability to cure disease and forestall death. “Hope for a cure” is the catchphrase that signifies the single-minded focus of medical hope.

Doctors and hope

Doctors who care for patients with life-limiting illnesses often believe that hope in a miracle cure is necessary for their patients’ survival, and at times they dole it out like a powerful medicine. By outward appearance, this limited interpretation of hope may seem to be successful: Patients who hope for a cure remain optimistic and motivated to “fight” their disease, they are willing to endure harsh treatments even with severe side effects, and they are more accepting of whatever new or experimental remedies the doctor offers. All this occurs for these patients in the pursuit of one goal: to be cured of the illness that has been defined as their “enemy.”

But the over-reliance on “hope for a cure,” which is often not based in reality, has a dark side and can actually cause harm to patients despite the doctor’s best intentions. A recent article by Richard Smith in the British Medical Journal titled “Hope is Hazardous” details some of the potential harms of false hope:

• Patients have unrealistic expectations of how much time they have left

Smith reports on a study that found patients with terminal cancer overestimated their own likely survival times by up to 10-fold: On average, they believed they would live another eight years, but survived only nine months. This misperception by patients leads to other harmful consequences.

• Patients continue treatments that have little or no benefit

In a misguided belief that there is a great likelihood a cure will be found, patients may agree to ongoing treatment that is futile and costly. They focus their time and energy on seeking a cure rather than directing their attention elsewhere to more meaningful and beneficial goals.

• Patients spend their last months of life sick with side effects

When patients choose aggressive treatment in hope of a miracle cure, they may spend their final days in the hospital, debilitated by side effects and unable to enjoy the time they have remaining. While some might make the same choice even if they knew it had little chance of helping them, others might prefer to spend their last days differently if they truly understood how little time was left to them. But if they are misled by false hope, they are denied the opportunity to make that choice.

• Delayed acceptance of palliative care and hospice

Doctors who rely on “hope for a cure” to motivate their patients are reluctant to refer them for palliative care or hospice, which they believe would destroy the patients’ hope. But those patients end up missing out on whole-person, symptom-focused palliative care that has been shown to improve quality of life and even extend life by up to a month.

• Inability to focus on what really matters in life

When patients spend their last days of life dealing with treatment side effects, they have little time or energy to focus on relationships, tying up loose ends, completing special projects, and reflecting on the deeper meaning of life. When death arrives, far more quickly than expected they may feel cheated out of an opportunity to be at home with their loved ones and experiencing those things that are most important to them.

How to “fix” hope at the end of life

The antidote to this narrow “hope for a cure” is to broaden the focus of hope to its full spectrum, as described by Josephine Clayton and her team of researchers. According to their studies, hope at the end of life can still include the desire for a cure, but should also address many additional outcomes: hope for achieving a special goal, finding meaning in life, healing relationships, having good symptom control, receiving loving care, finding spiritual meaning, and having a peaceful death.

In her book Exploring Hope in Spiritual Care, chaplain Laura E. Shay writes that it is possible to help a patient shift to a broader focus of hope by being present with them in the moment and asking what hope means to them. In addition, she recommends various practices for meaning-making such as a life review, forgiveness, writing stories, music, art, dance, and centering prayer.

Emily Dickinson wrote: “Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops at all.” When used properly, hope is elusive and fragile and beautiful, like a bird that never stops singing its song.

We can utilize hope’s potent medicine to enhance life, even while facing the reality of death. Medical providers should expand their own definition of hope in order to reduce the potential harm for patients at the end of life.