by Carolyn Thomas ♥ @HeartSisters
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: J
♥
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 30% off the list price).
See also:
-Can denial ever be a good thing for heart patients?
–Heart disease within “the comfort of denial”
–How optimism can be good for women’s hearts
Heart Sisters 
Hi Carolyn,
Hope is such a tricky thing and very personal, too, as we all have different perspectives and values. I suppose you could say we start every day with hope – otherwise why would we bother to get out of bed?
When a loved one is given a dire prognosis, hope can mean very different things to each family member as well as to the person who’s ill, of course. Too often patients feel like they can’t let loved ones down and stop treatment, for example, when that’s what they’d really prefer, and that’s not right. I like the questions posed in the quote you shared. Acknowledge whatever the person expresses regarding what she/he is hoping for and then go on to ask, what else are hoping for? Broadening the discussion without judgment is sound advice. Like with most things.
Hope is an evolving thing, for sure. Thank you for yet another thought-provoking article.
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Thanks for that perspective, Nancy – patients who make personal medical decisions based on not wanting to let their relatives down – that’s a sad scenario, isn’t it? I wonder how many futile or painful procedures are continued for just that reason? The really sad thing is that by this stage, patients would have to summon up the energy to argue with family about what they actually want or don’t want – when they’re feeling least able to engage in argument.
I keep thinking of the many years I worked in hospice palliative care – so many parallels when it comes to what patients hope for. Consider food, for example: it’s common in end-of-life care that seriously ill patients will refuse food as the body’s metabolism naturally begins to slow down, yet families almost always are alarmed by this, and try to feed the patient in a misguided attempt to “keep up their strength”. It’s also common for a patient to finally open her mouth to accept the homemade ‘favourites’ the family has brought so as not to hurt their feelings! Think about that! The poor patient is essentially saying she’d rather choke to death than upset her family.
And as you say, each family member may have different interpretations of what’s best for the patient. Dueling siblings! All of these are good reasons for all of us to make sure we complete documents like Advance Directives or Living Wills.
Take care, and stay safe out there. . . . ♥
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I tried to post a comment with my usual user name, Jenn, and my email. A password was asked for. The one I tried was no good.
I needed a WordPress password. I don’t believe I have one. I haven’t used WordPress, although I know it has tried to contact me.
During this process, my carefully thought out comment was lost. This is the second time this loss of comment during unsuccessful effort to post has happened to me.
I would hate to think I have lost all ability to comment on Heart Sisters. It is a blog I have read and really appreciated for many years. It was originally recommended to me by a dear friend with heart disease who has since died.
Please tell me what I must do to regain my ability to post comments on Heart Sisters.
Thank you.
Jenn
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Hello Jenn – I’m sorry you’re having this odd problem. I honestly don’t know how the ‘leaving reader comments’ function works behind the scenes (I don’t leave comments here myself, other than my replies as the site moderator). I wish I could explain what happened, but I can’t. The fact that you did successfully leave this comment suggests that you have regained your ability to post comments here in the future if you repeat the same steps you took today.
Good luck!
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Hope for us in the terminal cancer community is very very different from before cancer.
It’s such a huge change to know what to hope for, and I’ve not found that doctors are much help with that. It is in the Metastatic Breast Cancer community that I find hope and know what to hope for.
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Thanks for sharing that perspective, Abigail. I was thinking of your situation while I was reading the original JAMA essay. Like most (all?) people in your MBC community, you have never been on this unique road before – each step is a first for you, so one step at a time, as you listen and learn from others about their own steps.
Listening and learning from others in the same boat reminds me of the day I met a woman who had been living with inoperable coronary microvascular disease for 12 years. I had just been diagnosed with the same condition weeks earlier, and meeting her bolted me into a pit of despair. 12 years? TWELVE YEARS?!? My cardiac symptoms were so frightening and so severe that my reaction was “I can’t do it. I can’t live like this for 12 more years!”
Well, that was almost exactly 12 years ago, and I seem to still be here – but back then, I *knew* that I’d be dead within a year, tops. I figured I could somehow hold on for that first year, but had zero hope at all beyond that. But after meeting her (when the effects of my initial despair eased up!), I slowly began to entertain the possibility that my hope for one year *might* be expanded…
Take care, stay safe. . . ♥
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Excellent and thought provoking article as usual Carolyn. Heart disease can also be ever changing and unpredictable too because with exercise/time, many patients such as myself experience improved functioning and who knows how much or how little is possible?
Lori Turk
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Such an important point, Lori – thank you for that reminder.
Because a cardiac diagnosis is often so terrifying, it’s especially important for freshly-diagnosed heart patients to know that how they feel today is not necessarily how they’ll feel next month or next year while their hearts are recuperating.
I remember feeling so shocked the first time I took a shower at home after being discharged from the hospital. Just taking a shower was so exhausting that it took me a full 20 minutes to recuperate. I felt like I’d aged 100 years overnight. Fast forward a couple of weeks, and I was showering without needing a nap afterwards – and I felt so proud of myself!
Take care, stay safe. . . ♥
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I took covid19 at beginning of September 2021 – or covid took me, whichever way I look at it and having 4 stents and a history of heart disease, it was a scary time.
I am taking part in a university research programme and tested every month. If I hadn’t had hope that I would get over it, I don’t think I would be here now. I believe we all have hope inbuilt into our being.
Not to have hope means to have nothing – and if it helps one get through a sickness I am all for it.
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Hello Brenda – well said! I sure hope you are feeling better day by day after your COVID scare. I like your quote “Not to have hope means to have nothing” – pretty well sums it all up.
Take care, stay safe . . . ♥
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Hope Is… How can it be “false” ?
To label it false or true is a judgement made based solely on a materialistic human view. Doctors have no knowledge of the future, only a knowledge of a plethora of scientific studies from the past, conducted on human beings that were not his patients. Yes we all have similarities but we also have differences.
Faith, Hope and Love are all strong points of our “Spiritual Self”. They are not conducive to measuring and should always be supported. However, because they are difficult to measure, there are only a small number of research studies on their overall effects on healing.
I applaud the physicians writing and publishing this article on hope. I HOPE this is a part of an overall trend to include the patient’s Spiritual nature in their plan of care.
After all, what is harmful about a huge amount of hope? – except maybe the physician not wanting the patient to be upset or to turn on him if outcomes don’t match their hopeful expectations.
Hope On! I say – and keeping it fluid instead of fantastical is a very balanced way to go.
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Hello Jill – “Hope On!” – love that! I was surprised when looking into this JAMA essay by the three docs (all of whom work in palliative care, which by definition means they have far more experience than most clinicians do in dealing with the concept of hope during a life-limiting illness). I just loved this essay. And I was pleased to see how much research is actually now being published out there on the concept of hope in critical illness.
I can see both sides of this hope discussion, and actually changed my mind considerably after reading this particular essay. I knew that being upset if “outcomes don’t match hopeful expectations”, as you say, can also include family members’ considerable upset – often unfairly directed at the physicians who aided that hope. We still see this in oncology, when patients with end-stage cancer are often urged to continue/start futile invasive procedures. And just Google “Tijuana miracle cancer cures” for horrifying examples of “doctors” who prey on desperate patients with expensive scam treatments like hydrogen peroxide injections, targeted at the most vulnerable “customers” who fly down to Mexico full of hope – because false hope IS being sold there. And of course it’s not just in Mexico – many researchers report the widespread use of “non-beneficial treatments” in the last six months of life in our own acute hospitals, too.
This kind of cruel hope flourishes because patients cling to it, or because their desperate families do – as my brother-in-law kept up at his unconscious mother’s death bed, hour after hour after hour: “Hang on Mum! You can beat this! You’ve got to hang on!” She would have been peacefully dying by then, except for the sound of her son’s loud crying. I often thought what a dreadful way to die that must have been for my poor sweet mother-in-law.
Take care, stay safe. . . ♥
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What you mentioned about families is so true. . . a patient ready for a peaceful end can be traumatized by the medical demands of family or friends. We cannot give another the “will to live” nor should we guilt them into “staying alive for their spouse or kids”.
When my friend was dying from metastatic breast cancer we explained every option and the statistics of success and she chose or rejected the options. Sometimes she would ask “What would you do?” And I’d answer as honestly as I could.
She battled for 2 painful years, but it was her choice. Every person has their own story to live, we are just supporting actors.
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I’m sorry about your friend, and about those last two painful years. But as you so rightly point out, this was HER choice – no matter how hard it must have been to witness her suffering.
When I worked in palliative care, I had many opportunities to witness our in-patients making their own decisions about their own care. A common scenario was the two main types of symptom management preferences most often encountered: some patients made it clear that they wanted to be alert to the end, willing to tolerate pain or other symptoms (their hope was likely “I hope to feel like myself when my loved ones are around, not all doped up”) while other patients wanted to have any symptoms carefully managed to the end – even if the treatments made them sleepy or non-responsive (their hope: “I hope I don’t suffer, and hope to one day just drift off peacefully”) Meanwhile, we (the staff) were just supporting actors. That’s such a wise way to look at our roles.
One dying patient I recall was a middle-aged woman who instructed our nurses to put a directive on her chart at the main reception desk: “NO VISITS FROM THE SON!” The nurses (all of them mothers!) widely discussed this note with each other, arguing amongst themselves that no matter what had gone on between mother and son in the past, now would be a great time to forgive and forget and finally heal this relationship. The nurses approached our bereavement counseling staff, asking them to work with the patient to change her mind about refusing to see her son.
Instead, the wise counseling staff worked with the nurses, reminding them that – as you would now say – they were just the supporting actors.
It didn’t matter one bit if the nurses, or anybody else, approved or disapproved of her directive. None of us knew anything about that son or his relationship to his Mum, or her own personal reasons for not wanting to see him. I guessed that she must have put up with quite a lot from him – and her dying hope was that she would NOT have to put up with him for one more minute. An example of how patients can hold out hope for things that are not the ones we might share – and that’s okay.
♥
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