While hope for a cure after a cancer diagnosis is a feeling both patients and oncologists rightly cling to during treatment, when too much emphasis is placed on this type of “focused” hope, it can make it more difficult for patients to face their mortality. Moreover, such a focus can deny patients the opportunity to transition to “intrinsic” hope and find inner peace when cure is no longer possible, according to Brad Stuart, MD, Chief Medical Officer at the Coalition to Transform Advanced Care, a nonprofit organization dedicated to improving health care for patients with advanced illness.
Dr. Stuart and his colleagues wrote about the two sides of hope—focused and intrinsic—earlier this year in The BMJ Opinion, a blog published on the website of The BMJ (formerly the British Medical Journal).1 The article, “The Dual Nature of Hope at the End of Life,” became part of the discussion during the education session “Patient Communication: Balancing Hope Versus Reality” at the 2017 ASCO Annual Meeting.
The ASCO Post talked with Dr. Stuart about the difference between focused and intrinsic hope, how it is possible for both types of hope to coincide at the end of life, the challenge of transitioning from focused to intrinsic hope in the era of advances in cancer therapies, and how intrinsic hope benefits oncologists as well as patients.
Defining Focused and Intrinsic Hope
What is the difference between focused and intrinsic hope, and what is their place in the advanced care setting?
Focused hope is the kind of hope that all physicians and patients depend on when cure and recovery from a disease like cancer is possible. When patients begin treatment, they hope to recover from their cancer, and maintaining that desire for a positive outcome is important. However, holding on to that expectation when cure is no longer a possibility can be detrimental, because it can cause clinicians to recommend or patients to demand treatments that are likely to be ineffective, toxic, and costly. This can also prevent patients from making end-of-life decisions that could improve the quality of time they have left.
Another kind of hope or state of being that commonly emerges when patients let go of focused hope is what I call intrinsic hope, because it is hope that comes from inside. We all have intrinsic hope—it is part of the human condition—and it allows us to be at peace with whatever circumstances we are dealing with and helps us to live in the moment.
As opposed to outer-directed focused hope, intrinsic hope centers on subjective, personal issues and helps patients confront concerns they may have been putting off—for example, worry about loved ones they are leaving behind—and has the potential to bring them peace.
Living With Both Types of Hope
Is it possible for patients to experience both focused and intrinsic hope at the end of life?
Yes, focused and intrinsic hope are not mutually exclusive. Not only is it possible to experience both types of hope at the same time, but also they commonly coexist in many people. This isn’t a black-and-white issue.
The point is not to push patients either to continue or stop treatment, but to support them through uncertainty, so they can cope well regardless of the outcome.— Brad Stuart, MD
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People will always have focused hope, but as death approaches, something paradoxical often happens. In the book Being Mortal: Medicine and What Matters in the End, the author, Atul Gawande, MD, MPH, describes a scene in which a patient dying of cancer decided to return home to his farm to be with his family as death neared.2 After he died, his wife said that as his physical life got smaller (which is what happens on the outer level of life as people get closer to death), his inner life got bigger because he had found peace, comfort, and a sense of completion. And that is the key.
Intrinsic hope emerges as our inner life grows, and our work suggests that when clinicians are clear with patients about their poor prognosis, it helps patients engage more constructively with their grief and replace unrealistic hope for recovery with a more profound and resilient kind of hope. Encouraging the emergence of that kind of intrinsic hope from the time of diagnosis and throughout the continuum of care is what palliative care is all about. Early palliative care provides patients with both the physical and community support they need, taking care of their outer level, and providing the inner support necessary to nurture personal awareness and strength.
Transitioning From Focused to Intrinsic Hope
How can oncologists help their patients make the transition from focused hope to intrinsic hope?
Every oncologist has his or her own style of conversing with patients about end-of-life issues. Generally, practicing truly person-centered care, in which physicians tell patients not just what they need to know about the progression of their illness, but also ask them about their fears, values, and wishes, is the very best way to support the growth of intrinsic hope.
Truth-telling does not eliminate hope, but instead helps it evolve to a deeper level. When clinicians are honest, this can help patients accept their limited life expectancy without harming their well-being or the clinician-patient relationship. It allows physicians to connect with their patients on profound emotional levels and reassures patients they will not be abandoned.
Physicians can begin cultivating intrinsic hope soon after a cancer diagnosis without letting focused hope go until it is appropriate to do so. Once cure is no longer viable, transitioning to intrinsic hope helps ensure patients’ wishes for their end-of-life care will be honored.
Extending Life and Hope
Is the advent of so many more effective targeted drugs and immunotherapies in the treatment of cancer making it more difficult for physicians and patients to let go of focused hope?
Long before we had these newer therapies, we were often tempted to tell patients, “There is one more thing we can try.” Targeted therapy and immunotherapy are just the most recent examples of options we have to reassure patients—and ourselves—that there is something else to do to prolong life.
There is always something we can do for patients, perhaps not in the curative sense, but in helping patients achieve emotional and spiritual well-being at the end of their lives by cultivating intrinsic hope.— Brad Stuart, MD
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Targeted therapy and immunotherapy can yield dramatic responses in a significant minority of previously refractory cases. We need to account for this uncertainty by helping patients not only focus on the best potential outcome, but also prepare for the disappointment that, today at least, over three-quarters of them will still eventually face.
As physicians, we always hope for the best for our patients, and that means being prepared for anything, including recovery or death. This underscores the importance of supporting both focused and intrinsic hope simultaneously. The point is not to push patients either to continue or stop treatment, but to support them through uncertainty, so they can cope well regardless of the outcome. Physicians who are willing to be intellectually and emotionally honest often find their patients are grateful for the truth about their illness and prognosis. And we can draw some reassurance from the fact that letting go of focused hope is a necessary step toward the emergence of intrinsic hope.
Preventing Physician Burnout
Is there a therapeutic benefit for physicians in helping their patients achieve intrinsic hope?
People choose the field of medicine because they have a calling and a desire to help patients, and while the work is satisfying, it can also be stressful. One reason so many physicians experience burnout is because we neglect to nourish our inner lives and the inner lives of our patients.
We hate to tell patients there is nothing more we can do for them, but that is never true. There is always something we can do for patients, perhaps not in the curative sense, but instead helping patients achieve emotional and spiritual well-being at the end of their lives by cultivating intrinsic hope.
In my work in palliative and advanced care, I’ve seen how hope evolves and the therapeutic potential of intrinsic hope not just for patients’ well-being but for physicians’ well-being, too. We run the risk of hurting both ourselves and our patients if we think we have nothing more to offer patients, and that is what happens if we don’t understand that the inner level of hope, intrinsic hope, is always present. Helping patients find that intrinsic hope is part of our mission. We can support healing even when, or especially when, cure is not possible. ■
DISCLOSURE: Dr. Stuart reported no conflicts of interest.
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Addressing the evolving needs of cancer survivors at various stages of their illness and care, Palliative Care in Oncology is guest edited by Jamie H. Von Roenn, MD. Dr. Von Roenn is ASCO’s Vice President of Education, Science, and Professional Development.
1. Stuart B, Begoun A, Berry L: The dual nature of hope at the end of life. The BMJ Opinion. April 13, 2017. Available at blogs.bmj.com/bmj/2017/04/13/the-dual-nature-of-hope-at-the-end-of-life. Accessed October 24, 2017.