skip to Main Content

JAMA published an essaythis 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.

This Post Has 9 Comments

  1. 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.

  2. 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…

  3. 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.

  4. 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.

  5. 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:

    Chuck Pilcher MD FACEP

  6. Good stuff.

    It reminds me of the title of a presentation as a recent conference on medical ethics – "Autonomy Doesn't Mean Alone."

  7. 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. "

    Relationships matter…

    Roberta Rimbault, Health Educator

  8. 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.

Leave a Reply

Your email address will not be published. Required fields are marked *

Back To Top