Skip to main content

Can We Agree To Disagree


JAMA published an essay this week about a conversation I had with my grandparents entitled "Can We Agree to Disagree". This conversation changed the way that I practice medicine and changed the way that I discuss goals of care with my patients and their surrogates.

In the essay, I describe a gut wrenching, although thought provoking, end-of-life conversation that I had with my grandfather and his surrogate decision maker— my grandmother. The essay describes how my grandfather was more concerned about my grandmother’s well being, feelings, perceived burden, and her preferences (to have my grandfather receive full aggressive measures) than he was about having his own treatment preferences honored (comfort care).

What was even more eye-opening, however, is that neither of my grandparents knew that they disagreed with each other about these treatment preferences. Had we not discussed my grandmother’s needs and desires, and specifically addressed the fact that my grandparents disagreed, I am not sure that I, nor my grandfather’s clinicians, would have felt comfortable if my grandmother had subsequently changed my grandfather’s code status. I also wonder how my grandmother would have felt if my grandfather had signed his advance directive requesting comfort care, and then medical team had not attempted resuscitation when he did eventually “code.”

Thankfully, my grandparents had the opportunity to discuss these differences, come to peace about them, and agree to disagree. As Dr. Seth Landefeld, Chief of the Geriatrics Division at UCSF, recently reflected, “People are often more concerned with what they leave behind than with what they take or how they go.”

My grandparent’s story taught me that surrogate decision making is complicated and hard. It is also based on a myriad of factors – some of which trump the patient’s preferences. Surrogates needs and potential misunderstandings should be discussed prior to a medical crisis.

It has been five years since my grandfather died and my grandmother still feels at peace about her decision. My grandmother has had a series of her own medical problems and hospitalizations for serious medical conditions. The prior discussion I had with both of my grandparents has made discussions with my grandmother about her goals of care much easier. She, like my grandfather, would like to pursue comfort care. However, just like my grandfather, she would like her sons to have leeway in decision making.

Comments

Alex Smith said…
Loved the JAMA piece. Not only was it moving in the love and concern your grandparents obviously felt for each other, it was remarkable in that you actually had an advance care planning conversation. As your research has shown, there are so many barriers to advance care planning, but there are also plenty of opportunities to make it easier for familier. There is ample opportunity to make advance directives easier to read, understand, and complete.
Ella Bowman said…
Timing is everything! I just read your GeriPal blog, after reading your JAMA article only this morning, and had immediately ripped it out of my journal and put in my "save for future pallative care teaching opportunities file!" As a fellow geriatrician and hospice-palliative care doc, I have faced this same dilemma with patients and family members alike. You beautifully articulate the emotion, difficulties, frustrations, and dire necessity for such discussions to take place. I don't have any easy answers, other than it is always encouraging to see that others out there are facing the same dilemmas and taking the time to do the "right thing" no matter how emotionally painful or difficult it might be! Thanks...
Lynn O'Neill said…
Bravo, Rebecca! I hadn't thought about this specific wrinkle to goals of care discussions before. What a powerful demonstration of love by your grandparents...so much love for their surrogate decision makers that they would acquiesce to their needs as decision makers.
ken covinsky said…
What a wonderful essay! I look forward to giving this to our residents and students the next time I am attending on medicine.

It is quite remarkable how patients and families often don't fit into the compact little paradigms we develop in our "scholarly" work.

This essay makes me recall some of the common teachings I learned (and later had to unlearn) when I was in medical school. At that time, "autonomy" was king. I was taught more than once that the only role of the family member was as a reporter of the patient's preference. We were told it was important to make sure when we talked to surrogates that we were eliciting the patient's preference and not that of the surrogate. I think the focus on patient autonomy was very well intentioned, and grounded in a very sincere desire to do what was right for patients. However, our view of autonomy was too narrow---we forgot to ask patients how much autonomy they wanted, and neglected to consider that many patients want their family members to have input into real time decisions.

In 1992, a landmark paper in JAMA by Dr. Ashwini Sehgal was among the first to prove that patients are often willing to let their family members override their preferences. When a group of dialysis patients were asked how willing they would be to let their families override their advanced directive, 61% were willing to give their family members some leeway, and 42% were willing to give their familiy members a lot or complete leeway. This paper was very influential in changing the conventional wisdom of the era and certainly changed my thinking. Dr. Sudore's essay reminds us that we need to recognize that our patients don't think of themselves as "autonomous" units, but as part of something larger.
Chuck Pilcher said…
Dear Dr. Sudore,

Great article. Great writing. Congratulations!

I know what you went through with your grandparents. I’ve been there too, but with a bit different results. I’ve also been there as an Emergency Physician. Far too often patients and their families are NOT on the same page.

A feature of your discussion with your grandparents to which you did not allude is that of the concept of “Allow Natural Death.” I find too many physicians talking to patients about CPR, tubes, artificial this and artificial that. The hearers just get overwhelmed, tune out, and revert to “I want everything done.” However, for the past 15 years or more, my patients have uniformly responded with gratitude when the discussion focuses not on what can/could be done to keep one alive, but on what can/could be done to allow a peaceful, non-interventional NATURAL death.

Even if a patient I am admitting from the ED does not have a likelihood of dying during the admission – but especially if they do – I ask this question: “If, during your hospitalization, your heart stops or your breathing stops and you die a natural death, do you want anything done to keep that from happening?”

The peace that comes over the faces of patients and family when death is phrased as a natural occurrence at the end of life is unbelievable. It’s like they have been freed from a decision they never wanted to have to make in the first place, like they have been given back control, like they have been given permission to do it their way, not the way the medical establishment has led them to believe is expected of them. The uniform response I get is “Oh, no, doctor. I’m perfectly ready to go, and I’ve always said I just want to die naturally and peacefully. Please, no tubes.” And the family nods in agreement.

The same occurs with families, when the patient is unable to respond. “Oh, no, doctor. Grandma has always said she just hoped to be able to die naturally.”

Of course, this conversation works best with those of your grandparents’ ages.

Recently I spoke with a hospice physician, an intelligent internist with much experience with end of life issues. I found it hard to believe, but she had never heard of the “Allow Natural Death” (AND) approach to conversations about end-of-life planning. I referred her to a couple websites, and she is now an ardent supporter of the approach.

I wish more doctors would use it.

Just Google “Allow Natural Death.” Here’s just a couple links:
http://www.usatoday.com/news/health/2009-03-02-DNR-natural-death_N.htm
http://www.nursingcenter.com/library/JournalArticle.asp?Article_ID=800475
http://www.hospicepatients.org/and.html

Chuck Pilcher MD FACEP
chuck@bourlandweb.com
Patrice Villars said…
Powerful piece of work and writing. As I read it, I just kept thinking, 'this, truly, is love.'
Jerry said…
Good stuff.

It reminds me of the title of a presentation as a recent conference on medical ethics - "Autonomy Doesn't Mean Alone."
Roberta Rimbault said…
These are valuable insights for patients, the spouse/caregiver, family and health providers.
As a student of gerontology, these issues were raised, but as a partner in my husband's care, dementia presented another dynamic.

A Comprehensive, Stage-Sensitive Model of Grief in Dementia Caregiving
... gave me perspective about what I was feeling through the caregiving experience in the process of preparing a paper/presentation on grief.

"Significant differences emerged between spouse and adult-child caregiver groups as a whole and as a function of Clinical Dementia Rating impairment level. "

http://gerontologist.gerontologyjournals.org/cgi/content/full/41/5/658

Relationships matter...

Roberta Rimbault, Health Educator
Karin P said…
Very insightful and beautifully presented JAMA piece.
So very true but hard to imagine that after years of marriage so many are unaware of their spouse's feelings or often convictions about end of life care. I have experienced this phenomena so many times in my nursing career. But...what a "teachable" moment.

Popular posts from this blog

The Future of Palliative Care: A Podcast with Diane Meier

There are few names more closely associated with palliative care than Diane Meier.  She is an international leader of palliative care, a MacArthur "genius" awardee, and amongst many other leadership roles, the CEO of the Center to Advance Palliative Care (CAPC).  We were lucky enough to snag Diane for our podcast to talk about everything we always wanted to ask her, including:
What keeps her up at night?Does palliative care need a national strategy and if so why and what would it look like?The history of CAPC and the leadership centersAdvice that she has for graduating fellows who want to continue to move palliative care forward as they start their new careersWhat she imagines palliative care will look like in 10 or 15 years?What is the biggest threat facing palliative care? So take a listen and if you want to dive a little deeper, here are two articles that we discussed during the podcast:
A National Strategy For Palliative Care. Health Affairs 2017Palliative Care Leadership…

Advance Care Planning before Major Surgery: A Podcast with Vicky Tang

This week's podcast is all about the intersection of geriatrics, palliative care, advanced care planning and surgery with our guest Dr. Vicky Tang.  Vicky is an assistant professor and researcher here at UCSF.  We talk about her local and national efforts focused on this intersection, including:
Her JAMA Surgery article that showed 3 out of 4 older adults undergoing high risk surgery had no advance care planning (ACP) documentation. Prehab clinics and how ACP fits into these clinicsThe Geriatric Surgery Verification Quality Improvement Program whose goal is to set the standards for geriatric surgical care including ACP discussions prior to surgeryHow frailty fits in and how to assess it (including this paper from JAGS on the value of the chair raise test) So take a listen and check out some of those links.  For those who want to take a deeper dive into how GeriPal and surgery fit together, check out these other podcasts: Zara Cooper on Trauma Surgery, Geriatrics, and Palliative Car…

Psychedelics: Podcast with Ira Byock

In this week's podcast, we talk with Dr. Ira Byock, a leading palliative care physician, author, and public advocate for improving care through the end of life.

Ira Byock wrote a provocative and compelling paper in the Journal of Pain and Symptom Management titled, "Taking Psychedelics Seriously."

In this podcast we challenge Ira Byock about the use of psychedelics for patients with serious and life-limiting illness.   Guest host Josh Biddle (UCSF Palliative care fellow) asks, "Should clinicians who prescribe psychedelics try them first to understand what their patient's are going through?" The answer is "yes" -- read or listen on for more!

While you're reading, I'll just go over and lick this toad.

-@AlexSmithMD





You can also find us on Youtube!



Listen to GeriPal Podcasts on:
iTunes Google Play MusicSoundcloudStitcher
Transcript
Eric: Welcome to the GeriPal Podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: Alex, I spy someone in our …