The following is a heavily revised version of a letter I sent the palliative care physician with whom I met a few weeks ago, who kindly shared an article from JAMA, “Holding Hope for Patients With Serious Illness.”
Dr. S.,
“Holding Hope for Patients With Serious Illness” is outstanding, and I’m thankful that you shared it with me.
I appreciate the authors’ readiness to allow patients[1] to control our own narrative, given the basic data that medicine can provide about any serious condition. It’s trite at this point to note that the condition does not define the person, but as one currently on the patient side of the relationship, I can tell you that’s still how it feels in 2021. I appreciate that doctors have a massive challenge when it comes to what the article calls “serious illness”; they’re trained to help, to cure, to heal. And in many cases, healing, at least in the sense of a cure, is not within the reach of medicine. That has to be nearly as hard for doctors as it is for patients. I also appreciate the legal and ethical dimensions of medical care, in part thanks to my graduate training in ethics, which focused quite a bit on medical ethics. But there is so much more to healing than what conventional medicine provides.
A feeling of agency is all-important, yet despite many medical institutions’ claims to value patient engagement, hopefulness itself, as a form of agency, does not appear to be appreciated – at least, by the doctors with whom I have been working. When you have my diagnosis of Stage IV pancreatic cancer (or one similarly “serious,” as the title puts it), mustering and maintaining any kind of hope requires enormous effort. We are brought up to consider various kinds of cancer a death sentence. Then we find ourselves diagnosed with one of these cancers, and cared for by doctors who repeatedly make clear – in diverse ways, only some of them verbal – that they firmly expect us to die in short order. Believe me when I tell you that the overwhelming message is: “Of course there is no hope, and if you feel so much as a glimmer of it, you are sadly delusional.” No wonder the stats for survival of pancreatic cancer and glioblastoma are so low. What do you think this palpable “certainty” does to people? Again, I respect the statistics etc. regarding the lethality of this disease, and I am not afraid to die. (I won’t elaborate why here, as this is already long enough.) But people do literally incredible stuff every day. People break records every day. None of that happens without those people at least being able to conceive of the possibility. In many other areas of human endeavor, the importance of outlook is not in dispute. So why is this widely recognized fact not being applied in the case of the most challenging cancers? I realize this may sound idiotic, but it’s not. Ask Naomi Osaka and Simone Biles, to name just a couple of curve breakers who have publicly addressed the critical importance of conviction to physiological achievements.
It is impossible for me not to ascribe this denial of hope to (a) a desire to avoid lawsuits, (b) a desire to get high scores in expectation management, and (c) a cost:benefit algorithm devised in collaboration with the insurance industry. It really is an active denial of hope; in my case, it has manifested itself in different ways. Let me cite three: (i) No oncologist suggested that I try the alternate chemotherapy regimen; I had to request it of my own accord. (ii) No doctor has even mentioned that a small number of people diagnosed with pancreatic cancer at Stage IV survive for years. I have only heard about this from relatives, friends, Marisa Harris, who has survived pancreatic cancer diagnosed at Stage IV for 21 years (without a Whipple or pancreatectomy), and complete strangers commenting on blog posts, Instagram posts, and the like. (iii) Not once have I even heard mention of the actual survival statistics with Stage IV pancreatic cancer, which offer some justification for hope.
A little digging and a few conversations with survivors of pancreatic adenocarcinoma diagnosed at Stage IV are enough to at least spark hope, which also happens to affect behavior, and behavior in turn affects how we feel, and at least to some degree how our bodies function. I know that my body created the cancerous mass in or on my pancreas that now threatens my life, and I am actively doing everything I can to help my body send the cancerous cells packing, because they have served their purpose as an urgent call for change. (Excuse the dichotomies in my language; I don’t subscribe to a mind-body dichotomy but am using “body,” “mind,” and “cancer” somewhat metaphorically to identify aspects of a whole. I know enough to appreciate that “my body” would like to be rid of the cancer.)
But back to the article. More than anything, I appreciate the authors’ willingness to dwell in the grey zone instead of maintaining the stance so common among physicians – at least, in many of their interactions with patients – that things are black and white, and that numbers (whether statistics or results of blood tests) define what is real and possible, in effect to the point of predicting what is or is not going to happen. If I didn’t have a solid will, a curious mind, some well-informed woodworking friends (among them a brain surgeon and a research oncologist), and a stubborn streak, I would still be accepting the inevitability of my death in a short time as a result of this condition. It may happen, and if so, I will make my peace with that, something I have been actively working on since childhood. On the other hand, I may live for years. That’s my goal, because I want to be here for people I love, and there’s a lot more work I want to do.
Doctors cannot predict the future any better than most people, but if you were standing in my shoes, you would find it easy to imagine that some of them believe they can, because that is the message conveyed by the majority of my interactions with oncologists to date. The calculation of odds is retrospective, not forward looking – i.e., it is based on what has happened to date. But where members of the general public are concerned, this qualification about statistics not being the same as odds of future outcomes is more often assumed to be understood than it actually is. As a result, many cancer patients interpret the statistics as the odds of their own survival. The actual odds of our survival are likely to be higher if patients are encouraged to believe that we at least have a chance. I understand that this retrospection is consistent with the scientific method, but it is not the only way to look at serious illness such as cancer, and it is certainly not in the patient’s best interest. Even the financial services industry is legally required to post disclaimers that past performance is not a guarantee of future performance.
Now to the question of “facing reality,” as distinct from living in “denial.” While staying hopeful, I have no problem acknowledging the diminishing likelihood of surviving for more than the next few months as I get farther from the date of my diagnosis. It is affirming to see the doctors who authored this article refuting the paternalistic nonsense about patients needing to be brutalized (my word; that is how it feels) with routine reminders of “what is coming” in order to take their situation as seriously as it warrants. I would, though, like to see scare quotes around the word “false” in the following quote:
“Another report presumed that hope, especially when unrealistically optimistic or false, was potentially harmful because it could lead to noninformed decision-making and overly aggressive treatment. These presumptions are not supported by the literature. Existing data suggest that patients with false hope report better psychological outcomes than those who have lower or absent hope. Indeed, patient-endorsed hopes rarely equate to true delusion or misunderstanding.”
Hope is hope, regardless of how “well founded.” And here I am using scare quotes because again, the foundation that doctors are considering is based on past performance and doesn’t appear to take account of factors that defy quantifiable measurement.
These authors argue convincingly that most patients have the existential wherewithal to maintain hopefulness while putting our affairs in order, etc. in case we die sooner than we would prefer. Most adults are not simple-minded, but too many doctors treat us as though we were. I daresay most of us are able to live with complexity. Life is never as black and white as the experience of being a patient in this medical system might suggest. I am lucky to have woodworker friends whose day jobs are in medicine to help me appreciate this perspective. Those of us who can see the disconnects between our everyday experience of life and the extraordinary experience of oncology-world must constantly remind ourselves that life itself exists in the grey, not the black and white. Even high-school biology students are aware that our own cells are continually dying (or being killed by other cells) and being replaced. Physiologically speaking, much of what makes me “me” is not the same material that comprised me 15 years ago.
During this experience I have repeatedly had doctors “endeavor to convince [me] to give up [my] hopes and accept the clinician’s projected reality.” To me, at least, such attempts do feel brutal; they also seem wrong on principle, not to mention when viewed from a consequentialist perspective. Do my oncologists recognize that their approach implicitly discourages hope? I want to give them the benefit of the doubt, because I believe they are good, caring people. But when Dr. #1 starts a new chemo regimen with the statement “No one is going to live forever” and immediately refers me to a palliative care specialist, she might as well be forecasting the failure of the treatment; that is how such a statement, given the timing, comes across. I realize that she was trying to make it possible for me to a palliative care specialist sooner than I would have if she hadn’t brought it up that day. But still. Words and their timing matter. I am conveying to you, fully and honestly, the effect on me of those words and their timing. This psychological effect is so relevant to healing that statements such as this (and others I mentioned during our conversation in your office) could be seen to constitute a violation of the Hippocratic Oath.
Every interaction with oncologists leaves me deflated. After each one, I have to make a supreme effort to regain a sense of hope. I loved the conversation with you, and then I made the mistake of reading your notes. I shouldn’t have, because I saw yet again the relentless banging of the death drum in the statement about six months from now being the mean survival time in my case.[2] What is the point of even bringing this up in your notes? Is it some kind of assurance to the insurance industry that yes, the patient understands that she probably has just a few months to live, and so will probably not continue to expect you to keep paying for her medical care? Is it a way of assuring the doctor’s hospital system that the patient is unlikely to sue if she does not recover her health? I understand that the latter is a reasonable concern, but why does this belong in a doctor’s notes? Maybe I am missing a benign explanation, but by the time most of us have been referred to a palliative care professional, we have almost certainly been apprised, more times than we can remember, of our prognosis based on statistics.
As for those particular numbers, I am not one of those glibly-cited Americans who, based on statistics published by PANCAN, conflate a 3% chance of surviving three years to a 50% chance. And (not “but”) I still regard 3% as fairly generous odds, based on my life experience; I have encountered worse odds on multiple occasions. As the article acknowledges, cultivating hopefulness, even in the face of daunting odds (not to mention doctors who themselves in effect conflate 3% to zero — and that is damning) can also be beneficial. And I can tell you, as one in a pointed existential position, that hopefulness makes every minute of my life far richer than it might otherwise be.
The article does contain a few condescending statements. In the final paragraph of page 2, the authors suggest that “[p]atients could then be asked, ‘Given what is coming, what are you hoping for?’” Again, notwithstanding that we will in fact all die, this “given what is coming” seems condescending and too close to predictive. The following paragraph also starts with condescension; I recognize that doctors today are expected to be more humane than was deemed acceptable decades in the past, but I don’t see how it is the responsibility of medical doctors to “prioritize conflicting hopes.” Is that your job, at least insofar as hopes extend beyond decisions regarding healthcare and the legal machinery surrounding death? I don’t want my doctors even trying to cover that stuff, because none of them is qualified to do so.
I would have loved to see, in the penultimate paragraph, an acknowledgement that “[Holding hope]…demands…willingness to both change directions and move forward without knowing what is coming” is something that applies to everyone, regardless of health status. That is an objective aspect of the human condition, at least among those of us who care to hope and have the inner resources to do so. Perhaps such a note would have exceeded the word limit, but if not, it should be there.
With gratitude,
Nancy Hiller
[1] I have always disliked that word, with its connotations of passivity and suffering (from the Latin, for “to bear,” “to be afflicted,” or “to carry from underneath”), and wish there were a substitute for those of us in any state other than deeply sedated, under general anesthetic, or comatose.
[2] Let’s also acknowledge that these numbers are just a guide to what is happening and what is likely to happen. Addendum: Jenifer Van Winkle, a friend who is a registered nurse, pointed out to me that my doctor’s note about “six months” was a way to make sure that I would be able to sign up for hospice care, should I need it — i.e., not an unnecessary reminder to the patient but a heads-up to the medical industry regarding my case. I wish that doctors could explain such details to patients. Doing so would strengthen trust, instead of eroding it.
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