False hope vs. real hope for patients

by Carolyn Thomas    ♥   Heart Sisters (on Blue Sky)

My former colleagues in palliative care often spoke about the concept of hope as being a fluid, ever-changing state of being for patients and their families, meaning that hope can change over time. When we’re suddenly face-to-face with a frightening medical crisis,  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) created a thoughtful essay about hope published in the Journal of the American Medical Association (JAMA).  The trio describe hope itself as being therapeutic, even when it may seem that offering false hope may hurt the patient’s ability to understand or to make appropriatedecisions 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 perceive a need to correct their patients’ unrealistic hope to enable informed decision-making.

But 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 three authors view this dilemma from a practical perspective. They know that physicians can feel mystified when a patient expresses hope that clearly differs from their own medical expectations or experience, or when a patient hoping for a miracle prioritizes futile aggressive treatment. Some physicians, they say, 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 a 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.”

I’ve had a front-row seat at that “uncontrollable and paralyzing experience” ever since I was diagnosed on April 1st with invasive ductal carcinoma. I did not see this coming – because I naively believed that surviving a misdiagnosed widow-maker heart attack in my 50s was somehow the worst medical crisis I’d ever need to face. Apparently, it wasn’t.

The side effects from my chemotherapy treatments have been brutal – so debilitating that at one point, my oncologist agreed to first postponing a chemotherapy appointment and then reducing the chemo dosage by 20% to give me a break from suffering.

Despite (or because of?)  that suffering, the actual results of those chemotherapy treatments have been truly spectacular – which has helped me to embrace feeling hopeful now. My malignant breast tumor – the size of a small grapefruit – has now shrunken to “imperceptible” according to my oncologist and my MRI scans. Yet three days ago, my surgeon walked me through the mastectomy she has scheduled for me on November 3rd. She told me it’s not the size of that original tumor that is concerning her as much as the microscopically tiny breast cancer cells that might be spreading to one or more of my organs.

My family and I are now hoping  like mad for every possible bit of good news between now and my final post-op pathology results in November – and because we’ve already witnessed very good news about that rapidly shrinking tumor, it’s no wonder we still feel hopeful.

I’m not alone in this kind of hope. Consider that about 80 per cent of us embrace the personality trait known as “optimism bias” – which is the commonly over-estimation of positive outcomes and the under-estimation of negative ones.

If you’ve ever noticed a disturbing engine noise while you’re driving, but – instead of making an appointment right away with your mechanic – you decided that it’s actually sounding a bit better than it did yesterday, then you too have experienced optimism bias.

This phenomenon is widely observed among many patients, too. We know, for example, that a tendency to minimize the severity of cardiac symptoms is remarkably common, especially in women – yes, even in mid-heart attack. Even when my own ‘widow maker’ heart attack was misdiagnosed as acid reflux before I was sent home from the Emergency Department (despite my textbook symptoms of chest pain, nausea, sweating and pain down my left arm), I  felt relieved by that misdiagnosis. I’d much rather have indigestion than heart disease, thank you very much.

So I fully believed the Emergency doc who sent me away from the hospital that morning. See also: Denial and Its Deadly Role in Surviving a Heart Attack.

Why do patients’ optimistic expectations often clash with reality?  What if promoting hopefulness results in a sense of false hope? The three authors of the JAMA essay point to factors like continuous scientific advancements, highly publicized medical “miracles”, and the fact that many patients report anecdotal stories of somehow beating the odds. These factors prompted the JAMA 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 conflicting 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?”  They suggest:

“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 has your hope 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 (Johns Hopkins University Press). You can ask for it at your public library or your favourite bookshop (please support your local independent booksellers) 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 30% off the list price).