My former colleagues in palliative care often spoke about the concept of hope as being a fluid, ever-changing state of being. When we’re suddenly face-to-face with a frightening medical crisis, for example, we hope at first that maybe the diagnostic tests were wrong. When the diagnosis is confirmed, we hope that this treatment/this procedure/ this drug will be the cure. But if we’re not cured, we hope that our symptoms can be managed so we don’t suffer. If we do get worse, we hope that our suffering won’t become a burden to our families. Then we hope that after we’re gone, our loved ones will be taken care of.
There was never talk about “no hope”. There is always hope. But our hope changes. . .
Three physicians (pediatric oncologist Dr. Abby Rosenberg in Seattle, and palliative care physicians Dr. Robert Arnold and Dr. Yael Schenker in Pittsburgh) have created a thoughtful essay about hope published in the Journal of the American Medical Association. The trio describe hope itself as being therapeutic, even when it seems clear that offering false hope may hurt the patient’s ability to understand or to make realistic decisions about their own treatments:1
“Although clinicians intuitively appreciate the potential therapeutic benefit of hope, concern about taking away hope is a common reason for delaying conversations about a poor prognosis.
“Conversely, clinicians may be concerned that when patients have unrealistic hopes, they may perceive a need to correct their patients’ hopes to enable more informed decision-making. This tension presents a dilemma: how can clinicians help patients hold onto hope? Should hope be protected, even when being hopeful is unrealistic? Or should clinicians risk a loss of hope to ensure that patients understand their prognosis?”
In their essay called “Holding Hope for Patients With Serious Illness”, the authors view this dilemma from a very practical perspective. They know that physicians can feel mystified when a patient expresses hope that clearly differs from their own medical expectations and experience, or when a patient hoping for a miracle prioritizes futile aggressive overtreatment. Some physicians may try to convince patients and their families to give up their hopes and accept the projected reality.
But that’s where the ever-changing nature of hope fits in:
“Hopes are often inconsistent with each other and with what the patient knows is reality. For instance, patients with serious illness may indicate that they understand their prognosis – yet they need to be hopeful. For them, hope exists as a protective emotional state right alongside their cognitive understanding of likely outcomes.
“Even patients who know they are dying may verbally endorse a hope for a cure. They may hope to live longer than expected, may hope not to experience functional impairment, and may hope the clinician’s prognosis is wrong.”
Being hopeful, it turns out, can be psychologically beneficial.
The authors cite several studies suggesting that hope is associated with:
- improved physical and mental health
- improved relationships
- improved functional status
- improved coping skills
- improved patient-reported meaning and purpose
And promoting hope can also decrease symptoms of depression. The “Holding Hope” essay explains that “hope can promote a sense of control, forward momentum, and incentive in an otherwise uncontrollable and paralyzing experience.”
It’s hardly surprising, as these authors report, that patients and families hope for a better outcome than what’s actually supported by a prognosis. Consider that about 80 per cent of us embrace the personality trait known as “optimism bias” – which is the over-estimation of positive outcomes and the under-estimation of negative ones.
If you’ve ever noticed a disturbing engine noise coming from your car, but – instead of making an appointment right away with your mechanic – you decided that it was actually sounding a bit better than it did yesterday, then you’ve experienced optimism bias.
This phenomenon is widely observed among heart patients, too. We know, for example, that a tendency to minimize the severity of cardiac symptoms is very common, especially in women – yes, even in mid-heart attack. When my own ‘widow maker’ heart attack was misdiagnosed as acid reflux, I felt relieved by that misdiagnosis. Despite my textbook Hollywood Heart Attack Symptoms (central chest pain, nausea, sweating, pain down my left arm), I fully believed the Emergency doc who sent me home, even though I knew that arm pain is definitely NOT a sign of acid reflux. But I’d much rather have indigestion than heart disease, thank you very much. See also: Denial and Its Deadly Role in Surviving a Heart Attack.
So why do optimistic expectations often clash with reality? Isn’t promoting hopefulness likely to result in a sense of false hope? This essay’s authors point to factors like continuous scientific advancements, highly publicized medical miracles, and the fact that most patients have an anecdotal story of somehow beating the odds. These prompted the authors to ask:
“Why wouldn’t people hope for the best outcome, even if that outcome is unlikely?”
So how can our health care professionals help patients who hold multiple hopes? One approach, the three authors suggest, may be to ask patients what they have heard about their prognosis. Patients could then be asked, “Given what is coming, what are you hoping for?”
“The role of clinicians is not to prioritize a single likely or unlikely hope. It is not necessary to contest the answers nor convince patients to consider other futures. Instead, the clinician could acknowledge the response and also ask, ‘What else are you hoping for?’ And then again, ‘What else?’ The point is to help patients balance and diversify their hopes, providing flexible future directions and possibilities.
“After a patient develops that more complex vision, the clinician may be able to negotiate how to engage with it. This may involve a discussion of which hopes the clinician believes will yield the most likely or positive outcomes, and how to prioritize conflicting hopes.
“Discouraging a particular hope is rarely constructive. Rather, holding patients’ hopes may involve supporting a hope with which the clinician disagrees.”
Their “Holding Hope” essay concludes that even patients with false hope report better psychological outcomes than those who have lower or absent hope.
“Indeed, patient-endorsed hopes rarely equate to misunderstanding. Rather, patients’ hopes represent exactly what they are – the perhaps impossible future that people wish they could have.”
1. Rosenberg A, Arnold RM, Schenker Y. “Holding Hope for Patients With Serious Illness.” JAMA. September 16, 2021. doi:10.1001/jama.2021.14802
Image: Jplenio, Pixabay
Q: How have your hopes evolved since you or somebody you care about were face-to-face with a medical crisis?
NOTE FROM CAROLYN: I wrote much more about how becoming a patient changes us in my book, A Woman’s Guide to Living with Heart Disease. You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use the JHUP code HTWN to save 20% off the list price).