Recently, my family experienced the loss of someone very dear- Uncle Peter. Peter was an ex-Marine, father of three men, and patriarch of my spouse’s family; not to mention, husband to my wonderful and artistic Aunt Helene. He had been admitted to an outside hospital with leg ischemia and was transferred to a tertiary facility. Unfortunately, things did not turn out as we had hoped, and he was ultimately transferred to hospice where he subsequently passed away.
His decline was precipitous and rather unexpected, and we are still processing his loss; certainly, family functions will never be the same. Coming so close after the death of my best friend, Kristina, I found myself thinking a lot about them and others that I cared for and how we as clinicians communicate with families at the end of life.
I had discussed this topic with my colleague and good friend, Dr. Marcela del Carmen, and it turns out it was a topic she had been thinking about recently as well. As we talked, we realized how easy it was to recall instances where communication between doctors and patients (and loved ones) had been less than ideal. We could still remember the distress it caused (for us and those we had primarily cared for); indeed, these were the memories that stayed with us.
Common themes became apparent, and the lessons we learned about communicating with patients floated to the surface. Mostly they were learned in retrospect, with Marcela and myself wondering aloud, “if only I had …”
The lessons we shared are listed below. I hope it opens up more of a dialogue between those of us inside and outside of the cancer community, particularly when a critical situation arises (which it will):
1. Family meetings are for families. During my uncle’s first few days in the hospital, I had informed his clinicians that my Aunt had two sons in the area and that I, too, was involved and ready to help in any way possible. About two days following his admission, I had called Helene for an update on how Peter was doing. She had been shaken, unnerved by a family meeting that had been requested by the clinical team and one that she attended alone. She could not tell me specifically what had happened—she could only recall that scary terms were used (e.g., “poor prognosis,” “unlikely to make it home,” and “intubation”). It was if she was “ganged up” on—certainly not what the team had intended.
This alarmed me, but it took time to realize why. A family meeting implies that we as clinicians will be meeting with a family, not just the one who “happened to be around”. It should be up to the patient and his or her loved ones to decide who and how many should be there—not up to us and not at our convenience. I realize now that when meetings occur this way, we can miss the opportunity to achieve consensus, especially when we hope to lay out a plan for subsequent care that is consistent with the patient’s values and preferences.
In my uncle’s case, I wished his clinicians had asked one simple question of Helene: “We would like to meet with you about how your loved one is doing, and we’d like to do it today. Before we do, though, is there anyone else you would like to have join us for this meeting?”
I know I’ve learned to make a mental note to do so in the future.
2. Involve the primary team in any discussions. In conversations with Marcela, a common theme became apparent—that the outpatient attending is often not involved in the inpatient discussion, particularly with patients in critical care units. Yet, a patient’s outpatient attending is often the best person to help inform the discussion—we have known the patient prior to their admission and can also lend our expertise to any discussion on prognosis.
Without our input, patients may experience much confusion as they reconcile what the inpatient team is telling them versus what we, as their outpatient provider, have told them prior to becoming critically ill.
For example, both Marcela and I have had experiences where we had told patients with advanced ovarian cancer to expect a very difficult recovery but the intention of treatment was to induce a remission, if not cure. However, during an unexpected critical care hospitalization, these same patients were told that their prognosis was grave and that hospice was recommended, not further treatment.
In such a stressful time, patients and their families are sensitized to the information and opinions rendered by those of us in white coats. When one of us renders an opinion that might be contrary to what the other had previously told the patient, confusion and mistrust can be the unintended results. In critical moments in the patient’s course, multidisciplinary collaboration is critical; the primary outpatient provider (specialist or not) should remain a part of that team, to ensure that the message being relayed is one that is shared by all.
3. Avoid “med-speak.” Using non-technical language in our discussions with the patient and their family is a central tenant that ensures shared decision making. We recognize that it is far too easy for all of us in medicine to revert to medical speak. However, my recent experiences remind me that clinicians cannot underestimate the level of distress that some patients feel when they do not understand the lingo and are too intimidated (or embarrassed) to say anything about this.
4. The big picture is as important as the small picture. Goals of care help define therapeutic plans, no matter what the medical setting. Patients look to us for advice—not just about the most immediate of matters (“small” pictures) but also about the big picture. For someone who is critically ill, it’s important that families understand the small picture in the context of the big picture.
When it came to my uncle, we spent a lot of time with surgeons discussing the risks and benefits of amputation, and whether or not it was even an option. He had been reconciled to losing his leg because it was viewed as the endpoint. That is, until we asked the team directly about what Peter’s life would be like after he lost his leg; we wanted to know more than just the practicality of surgery— could he come home, go fishing, enjoy his cottage on Cape Cod. When we were told that his quality of life would be greatly diminished following amputation— confined to a nursing home, very unlikely to ambulate again, this big picture eclipsed the decision about amputation, and informed everything else that followed, including his decision to go to hospice.
I have found that decisions change depending on how values and preferences are placed in the context of the small versus the big picture. Therefore, our responsibility should be to address both, in as honest a way as possible, acknowledging that we are not arbiters of the future.
5. Do it. Just as we have initial consultations with new patients, we must commit to the final consultations as well, especially around the end of life. I realize it may not be possible to be there for every patient, but we should understand that for some (if not most), ours is the only voice they will hear, especially when the news is heartbreakingly bad. Ultimately, the voice of the intensivist, internist, or covering physician cannot replace a relationship between a primary doctor and his or her patient. Indeed, it still saddens me that Kristina did not talk with her doctor before she died; to me, it was the one aspect of closure that was unfulfilled.
I recalled a patient I cared for for almost five years. She had cervical cancer and in that last year, the tempo of her cancer had accelerated despite our continued treatments. While I was away at a meeting, she was admitted in fulminant hepatic failure. My partner had done her admission, reviewed the films, and sat with her and her husband. She informed them of her grave prognosis, and had recommended hospice. My patient had not accepted this, and asked only to speak with me. I still recall the flurry of emails that came to me while away, almost beckoning me to hurry back.
When I came home, I visited with them. I still remember going to her bedside, seeing her, her husband, and their daughter present. We chatted a bit—I apologized for not coming earlier. She had expressed her sadness that it was not under better circumstances. I examined her, told her I reviewed her scans and her labs; that things did not look good.
“What do you think, Don?” she asked.
“I think it’s time. I think you are dying.” I said.
“Okay. That’s what the team said, but I needed to hear it from you.”
“Well, I always said I would be the one to tell you,” I said as I reached out and hugged her. “Let’s get you home. I think it’s where you want to be right?”
“Yes. I want to go home.” She made it home the same day and died peacefully a few weeks later.
As we head towards a new era of medicine—one informed by genomics, empowered by new technologies, and influenced by social media, we must always remember that at the heart of medicine is the doctor-patient relationship, especially when our patients are facing the end of life. I hope that we can embrace the concept of interdisciplinary care and collaboration to ensure quality health care. But even in the context of interdisciplinary care, the bond between the doctor and patient is one that cannot be replaced, its significance minimized. I realize these tips are neither new nor novel, but I hope they serve to remind us all of some steps worth taking in our approach to patients, especially in their most vulnerable moments.
Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.