Lessons learned in difficult days can help physicians become effective providers from beginning to end

Issue: May 25, 2012

ByWilliam Wood, MD

I wasn’t expecting to write a column like this.

I had planned a follow-up about digital health, social media and “disruptive innovation” as applied to clinical oncology — and hopefully I can come back to that in a month or two.

Last week, though, I was attending on the bone marrow transplantation service, and although I’ve signed over the service now, images from the last several days have stayed with me.

These have been difficult days in the hospital, much more so than usual. During the past 72 hours, my fellow and I engaged in “bad news” or end-of-life conversations with six families. Although I could talk about my thoughts about how to have these conversations (a topic I still struggle with myself), I wanted to instead write about the very different ways in which three of our patients and their families approached death — and what we as providers might do to make this approach easier.

Difficult conversations

A few days ago, we started the first of several of these talks in an ICU. The patient was a young adult who had relapsed after an allogeneic transplant, and then experienced a catastrophic event after treatment with salvage chemotherapy. She was on a ventilator but did not seem to have any neurological function.

The medical facts were as clear as they could be — a grim prognosis already, and now no hope for any meaningful recovery. So, the answer seemed to be straightforward, too — withdrawal of support seemed the most humane way to allow the patient to rest in peace, and the family to fully engage in the process of grieving and closure.

William Wood

This family was religious and shared my own Catholic beliefs. I saw this moment as their personal Good Friday — a time of unspeakable tragedy and sorrow, but in the passing of this person’s spirit, an opportunity to allow her mortal body rest and to move toward spiritual resurrection and healing.

The family wasn’t there yet, though. Acknowledging the medical facts, they nevertheless described themselves as not yet willing to let go. Several days passed, and the body on the ventilator became less and less recognizable. Support was finally withdrawn.

The patient as the guide

Another person around this time — middle-aged and with a different diagnosis — also found herself in the ICU with relapse after allogeneic transplant. When I met with her and her husband, she was weak but improved with corticosteroid treatment.

The discussion was thorough, and the patient and her husband were realistic and thoughtful. They wanted to know about any options that might exist that could provide a realistic possibility of durable remission without significant toxicity. Barring this, they were interested primarily in supportive management and potentially a transition to hospice care.

In this case, the relapse had come early after transplant, with rapid and fulminant onset. This had been a shock to all of us, the treating team included, and we were still coming to terms with the dizzying transition from “cured” to “incurable.” I was struck by how difficult it was for us, as a transplant program, to let go while the family was so much further ahead of us in this regard.

There were no realistic options that met the criteria that the patient’s husband had outlined, and we knew it. Still, this was surprisingly hard for us to say, at least right away. Always in medicine, in oncology in particular — and even more so, perhaps, in transplant medicine — it seems there are “things that can be done.”

But in this case, the patient and her husband were our guides. My fellow and I spoke with them honestly and transitioned her out of the ICU to a supportive management plan. A few days later, a day before she was discharged, she told us, “I am at peace. I know I am dying, but not momentarily. That’s OK. I am going to take off my mask and enjoy being outside. I’m going to get back into my own routine. I’ll be fine.”

She seemed peaceful, and her outlook was liberating, for her and even for us. She was escaping the transplant patient role and leaving behind the fear and anxiety of impending death, returning to the essence of who she was and accepting her mortality.

An evolving process

A third patient was one I had known for a long time, from his days undergoing primary treatment for his leukemia, through his myeloablative transplant. He, too, had relapsed within 3 months of his transplant, and after a few cycles of outpatient lower intensity therapy, had some suggestion of leukemia improvement.

Ultimately, we hoped to proceed to donor lymphocyte infusion. Unfortunately, he was admitted to the hospital with neutropenic fevers and was eventually found to have an opportunistic infection. As his infection was being treated, he grew weaker, anasarcic and deconditioned.

A bone marrow biopsy showed significantly improved but residual leukemia, raising concerns about whether hematopoietic function would adequately recover to successfully combat the infection. We had several discussions about goals and what to do, and he and his wife wanted to continue to fight and press on. His overall prognosis was poor, and it was difficult to imagine how remission of his leukemia could ever be achieved. He knew this, but he was growing weary of hearing and participating in our difficult conversations. This would be an evolving process.

New approaches

I couldn’t help but reflect on these three instances, thinking about what these told us about how our transplant patients approach death.

For some, the concept of death is so dissonant from the goals of transplant that it seems impossible to contemplate or to wrestle with when relapse happens and the prognosis becomes grim. Others become comfortable with their mortality under these circumstances, but as a treating team, we struggle to fully accept it.

These conflicts within transplant, or within leukemia and lymphoma more generally, may come from the false hopes we sometimes foster by using approaches that we like to think of as “curative,” even in high-risk scenarios when long-term remission comes less than half of the time.

Perhaps we need to flavor our initial pre-transplant discussions a little differently, to prepare our patients a little better for what might happen if things don’t go the way we hope they will. Maybe we need to be honest with ourselves about the limits of our anticancer techniques and the complex and unpredictable ways humans and diseases respond to what we do. Perhaps we can learn from our colleagues in solid tumor oncology and involve palliative and supportive care early in the care of our patients, as unusual as that might seem in transplant, leukemia and lymphoma.

Our patients certainly have many complex psychosocial and symptomatic concerns that could benefit from additional expertise early on in the treatment trajectory — the same expertise that could be brought to bear, later, in facilitating difficult conversations about realistic goals and hopes.

In the meantime, this is an area in which all of us can continue to learn and grow, so that we can be effective providers at every time point for our patients, from the beginning until the end.

For more information:

William Wood, MD, is assistant professor of medicine in the division of hematology/oncology at the University of North Carolina in Chapel Hill. He may be reached at william_wood@med.unc.edu, or follow him on Twitter (@WoodBD). Disclosure: Dr. Wood reports no relevant financial disclosures.