Every so often, a scholarly piece of writing affects and changes me. It was four years ago since that happened, and it has occurred once more.
We all encounter something on occasion that moves us emotionally, makes us think about who we are, and perpetuates our individual growth. For the better certainly, and more often than not, this evolution occurs because of watching or participating in a transformative experience. When it happens due to a written chronicle however, it is more profound for reasons that are obvious—words do not assimilate into our character like witnessing a real time event. For that reason, a composed narrative like the one that inspired this post is all the more intense.
Atul Gawande is ubiquitous these days, and stating you are a fan is passé (our president included). However, that does not detract from the power of his skill, and his 2010 New Yorker piece, entitled “Letting Go,” was as moving an account of the dying process, palliative care, and the shortcomings physicians have at dealing with these issues as I have encountered. I am not the first to recognize this, particularly with this piece, but beyond the gifted writing, there is a deeper emotional element. It stirred me to think about my own feelings on death, as well as those of my colleagues and trainees.
Often, people ask, “If you were not practicing in your current discipline, what medical specialty would engage you?” For me, I wistfully say Pain and Palliative Care.
That choice is complex and goes beyond the scope of this essay, but the challenge of eliciting the emotional underpinnings of the anguish people experience, sometimes rational, sometimes not, while in the throes of terminal illness, is an art worth mastering.
It is an intricate field meriting exclusive focus, not just a side pursuit—as it is for so many hospital-based practitioners. Some docs enjoy the operating room, but for those like me, it is peeling away and attempting to understand the cognitive layers of a patient’s distress.
This worldview draws me to articles on end of life choices and the ever-mixed signals we get from families, patients, and caregivers. Topics like these are not easy to assimilate into the rigors of our normative bedside rounds.
As we reform the healthcare system, calls to engage patients and motivate physicians to adopt the use of advance directives (health care proxies, MOLST/POLST, Five Wishes, and DNR orders) follow a societal opprobrium from virtually every financial stakeholder in this arena that the American dying process is excessive. Just talk to patients and find out what they want, pundits say. It sounds so easy, but those on the clinical front lines know this is not reality-based advice.
However, time, motivation, and skill aside, there is also the issue of feasibility. By that I mean, can we ask people how they want to die and what quality of life they desire “in the moment,” knowing their illness will evolve and potentially change their perspective? The answer is no, and the literature is rich examining the difficulty of capturing this dynamic, particularly in one 5-10 minute discussion.
I commend for your review these wonderful papers, here, here, here, and here. The take home of these citations and others are unambiguous: we have it all wrong, and if we are going to solve the quandary of “the conversation,” we need to rethink our courses of death. The recent publication from the Dartmouth Institute concerning the Quality of End-of-Life Cancer Care further demonstrates the extremes in nationwide variation in how we manage this practice.
Unfortunately, and this is another treatise entirely, our country is at least a decade or two away from having a sophisticated discussion on this subject (I believe that–unless a central U.S. figurehead personally experiences an event similar to Terri Schiavo, heaven forbid). Witness the calls for deficit reduction, Medicare trimming and the urgent need to reduce wasteful care in the ICU. The United States is not ready to cogitate, and if you are reading this via the SHM portal, my statement does not require elaboration, i.e., recollect the August 2009 death panel and rationing controversies. Additionally, the most recent and unfortunate reversal from the administration on the subject of reimbursement for end of life discussions was disheartening.
A Headline We All Want To Forget
Very illustrative of these shades of gray as it relates to patient decision-making, Gawande uses his own father’s recently diagnosed cervical spine malignancy to convey this point. Surprisingly, as both he and his dad are doctors (his advanced directives were unbeknownst to Dr. Gawande), they never discussed his care preferences. When his father confronts a potentially crippling, high-risk resection, he tells Atul that should he lose the ability to use any of his limbs, do not keep him alive. This astonished him.
Conversely, another patient he profiles reports that his litmus test for survival is the retention only of the ability to enjoy chocolate pudding and watch football games. Dr. Gawande seems surprised at this patient’s low bar for cognitive sustenance.
This study in extremes exemplifies a contrast and one that without detailed conversations with each patient— over time and evolving conditions— can potentially generate muddled signals in the ascertainment of end of life goals.
It always amazes me when patients summon the strength to live, or at least convey it—perhaps when it was absent days before, with the sudden emergence of an important upcoming life event, say in a month or so, despite the imminence of death. Conversely, the opposite occurs when family and friends are absent, money is sparse, or apartment foreclosure is in the offing. Elderly folks often say, “It is time, I have had a good life,” and nothing more. They just know. Not surprisingly, as clinicians will attest, patients true to their outlooks perish or persevere according to varying circumstances, however limited their time horizon might be. This is a dynamic process!
Additionally, idealistic pronouncements from our patients when queried regarding fulfillment of end of life preferences, such as, “perform no heroic measures,” or “don’t keep me alive if you don’t think I will make it,” or “you know what I want, just do the right thing” are impractical in the context of the poor prognostic tools we possess.
How do we respond to our patient’s wishes then, even if society believes we know them, but in reality, we do not?
Regardless, these variables of uncertainty and attitudes, and the patient’s life outlook in that moment and how they might change (or not) shape the roadmap we hew between doctor and patient. However, we often do not ask the right questions, or any questions for that matter. We simply do not know how.
As mentioned, patients overestimate our ability to “know.” Moreover, they misjudge what institutional medicine can deliver to save them, the costs of that delivery, and they assume their surrogates can identify their wants. These fallacies are not surprising, as we have not had much success educating the public. Again, many in our profession are in the dark…
With that in mind, I gathered our residents, staff bioethicist, and palliative care physician for a conference on this topic. I gave them a brief introduction with themes not unlike those above, and asked them to listen to this twenty-minute interview. Afterwards, we discussed the how-to’s of patient engagement and delivery of terminal care, its vagueness, and of course, its inherently difficult nature. In particular, I focused on how complex the patient discourse is with the limited advanced directive formats we have today.
Progressing to the next exercise in the conference, I told the group to write their wishes and the quality of life they would choose if a surrogate was required to make a decision regarding their fate in the throes of a critical illness.
To assist them and open the chat, I revealed mine.
My own wishes are as follows: two weeks of maximal care, followed by a multidisciplinary team discussion if my progress is negligible. Assuming there is agreement amongst a majority of the care group that there is little chance of meaningful recovery, I want discontinuation of life-sustaining measures. I defined meaningful recovery as having adequate enough cognitive skills that I can read, write, and engage in intellectual pursuits. My motor skills are not a concern, providing the resources are available to care for my bodily needs (they are).
The intangible here is whether my wishes are realistic. Can anyone predict this outcome, mainly, full cognitive recovery—and if not, how can I/we expect society to adhere to the same?
I wanted to discern the thoughts of our trainees, and what follows is a selection of their responses. Keep in mind, these are physicians, albeit junior ones, but with clinical experience. Knowing the difficulty of parsing expressed wishes, I was keenly interested in identifying whether they might engage in the same imperfect communiqués as their senior counterparts. You be the judge (there are many, but do skim a few):
1. I would like to at least be able to communicate in these areas:
–At least yes/no response plus some sign I understand
–Read and/or listen (though preferably both), including books, music.
–If terminal illness, I would forego life-sustaining measures like CPR/Intubation (IE, DNR)
–No feeding tube
2. I know I am going to die eventually and I do not really see any reason to prolong my life longer then “natural”. I would not want any treatment that would cause me any additional discomfort, like nausea, vomiting from chemo or other drugs, surgery, central lines, chest tubes. I just want to be able to die at home with pain controlled.
3. I would not want to be subjected to prolonged periods of immobilization at the mercy of healthcare workers/friends/family. I would not want to rely on tubes for feeding or tubes for breathing. If I am not conscious of my surroundings or am conscious of them but not able to interact (with words and movement) with the people I love, then I do not wish to be “artificially maintained”.
4. If I reached the terminal stage of an illness, I would not want to be in the hospital with extensive intervention. I would choose comfort care, and spend the remaining time with loved ones instead of fighting what would be an inevitable death in the hospital, where contact with family and friends is minimized. That is the most precious thing when time is limited.
5. If ability to make decisions is permanently compromised, in other words, if there is permanence of my lesser status and ability to think for myself, then there is no point to maintain life.
6. If I am aware of my family at the bedside, then life is worth living regardless of pain.
7. I would rather die than live this quality of life if:
–If I no longer recognize myself or loved ones.
–If I could no longer communicate.
–If I was “a vegetable” ?if there was no way I could get off life support with the same quality of life I had before I was intubated (if were to be intubated)
–If I had no one else in my life to live for and if I could no longer work
–If I can’t smile and express myself.
–Paralyzed from neck down
–Dependent on a ventilator
8. If I could not read a book/newspaper and comprehend it
If I could not hold a conversation with family/loved ones or lacked verbal comprehension and visual recognition of loved ones. In turn, I would also not proceed with interventions that would have a high likelihood of causing the above.
9. I would not like to be at the point or beyond where I need a feeding tube or permanent intubation.
–Avoid ICU, no prolonged stays in ICU
–No permanent colostomy bags
–Would prefer to die at home or at hospice
10. I cannot imagine my life unable to eat on my own, think for myself, or make my own decisions regarding care. I do not want to be kept alive if I am ventilator dependent, never regaining brain function/cognitive abilities that I have currently.
11. I would not want to live on a ventilator or receive chemotherapy for an incurable cancer.
12. If a family member had to make the decision to withdraw life support, I would let them if I was vegetatitve. Quality of life is more important to me than quantity of life.
13. If I am over 75 years old then DNR/DNI, unless there is a good chance my mental status will return. As long as I can see and understand who I am and who my family is, then resuscitate and intubate. If younger than 75, then be more aggressive.
14. Goal is to be awake mentally and recognize my family at the end.
15. I would not want to be confined to mechanical ventilation with no chance of successful weaning. No suffering from persistent pain. I would not want to be kept on support once my mental capacity deteriorated to an irreversible point where I am unaware of my surroundings or myself. I would prefer to live a shorter life with full mental capacity than a slightly extended life with complete deterioration.
16. If I couldn’t be a functional person outside the hospital or to get around in a home myself.
17. Line in the sand is when I can no longer make autonomous decisions for myself mentally or when I can no longer go fishing.
–End of life: still being able to get out, and communicate verbally with friends and family.
–No feeding tubes
–No respirator support
–Experimental treatments, which only offer “hope” but puts me in agony during treatment
–Repeated hospitalizations for the same thing or any condition associated with worsening of my disease process.
18. I wouldn’t want to be kept alive if:
–I had no brain function
–Or If I was not able to communicate anymore
–Or If I was demented
–Or If I had intolerable pain
–I would only want CPR performed if the condition was reversible.
–I would not want a feeding tube if the process were irreversible.
19. Perhaps it is a personality flaw, but my threshold lies before the point at which a surrogate decision maker becomes necessary. My identity and self-image are largely intellect based; the things that make life valuable to me are conscious thought and free will. Without the capabilities of either, life ceases to be of any value at all.
20. I would never want to be placed on long-term life extending equipment (tubes/vents), even if I was conscious—unless there was a realistic chance for significant recovery of adequate quality of life after discharge.
–I would never want to be more dependent than autonomous. If this were to happen, I would choose palliative measures for comfort care.
–I hope to spend the end of my life comfortably OUTSIDE of the hospital; this is the most important issue for me.
21. Losing the ability to interact/communicate with those around me in a meaningful manner.
22. –I would not want to be on a ventilator or feeding tube for anything that is irreversible.
–I would not want to live if I did not have an intact memory where I could remember my loved ones or be able to communicate with them.
–I would ideally like to die in the comfort of my own home with my loved ones at my side.
23. End of life for me would be when I no longer can take care of myself. (i.e. bathe, walk, and breathe on my own). Most importantly, I would not want to be a burden to my family/ loved ones. I would want to pass away with happy memories. If I were to suffer in bed, it would be slow and painful for everyone around.
24. I have a very low threshold for when I want care discontinued. I would not want to continue living if I am unable to think clearly. If am under 65 years old and I have lost mobility and vision after undergoing a procedure, then I would rather not keep going. If my surviving a hospitalization will leave me in a state of depression, then I would rather not be alive.
25. I want to be outside to have the ability to interact with other people (through speech or writing)
26. No terminal life sustaining measures with little to no chance of living a reasonable QOL
What I find striking about these responses is their likely resemblance to the desires of all individuals, even those free of affiliations to the healthcare province. Just like my care requests, the trainees are vague, indeterminate with their descriptors, emphasizing surrogate responsibility, and with unrealistic expectations regarding their certainty of outcome, i.e., “keep me alive, only if I can perform this task or that.”
Again, the common thread amongst the replies was the above-mentioned dependency on surrogacy, and the reliance on a quality of life threshold that is unmeasurable. Granted, after a period of illness, a qualified physician can predict if motor function is recoverable, or if feeding tubes or mechanical ventilation are permanent. However, cognitive status and the ability to interact with family, or engaging in meaningful intellectual pursuits; really, who can say what the outcome is and where the threshold lies.
What conclusions can we derive?
Well, for one, if easy answers are necessary, this is not the place to gaze. I cannot surpass the content and conclusions of these nested hyperlinks (same as above). They state far more gracefully than I do the shortcomings of our system and approach, and furnish direction as to how we must reconnect with our patients to deduce their preferences. Health providers on the front lines know this is NOT as simple as non-clinicians describe it.
Two, unlike Europe, our culture is not as permissive with end of life decisions (see Fig. 1: variation in US hospice referral, avg. 32%). The death and dying paradigm that works overseas, while translatable here, requires rethinking and will not decrease wasted resources quickly. Passive opt ins or carrot and stick approaches for advanced directive completion; one off “how would you like to go” conversations; or ICU co-payments will not get the job done. We need to carve out time and money for this endeavor. If we do not, it will not happen. It is too damn hard.
Fig. 1: Variation in USA Hospice Referral at End of Life, 2005
Three, if doctors are poor at making their needs known, well, see #1 and #2.
Finally, this change must start at the top, and by that, I mean, leadership from CMS and both parties in Congress, respected societal figures like Oprah Winfrey, Michelle Obama or Laura Bush, and perhaps most importantly, the press and media. While there are local pockets of success in this endeavor, enlightenment regarding how to improve the dying process on a grand scale will only occur with a national struggle. This is not a state based, let a thousand flowers bloom task, and we need worldly skilled educators to inhabit the classroom and instruct the citizenry, i.e., us, the pupils. Many physicians, including myself, are still in the latter category.
I hope the minds at the top get this and begin to put themselves on the line for this worthwhile undertaking. Caregivers are frustrated and need a positive signal from those who know better.
ADDENDUM: Very timely, both the New York Times and Washington Post feature the same themes from stories in their health sections today. The WaPo piece (from Kaiser Health News–the foundation, not the health plan) is uncannily similar, and a very nice adjunct.