Navigating Blood Cancer in Its Final Stages: Best Practices

Blood cancer death rates have dipped in recent decades, dramatically boosting 5-year survival rates in leukemia, lymphoma, and myeloma. Still, the three diseases were expected to kill more than 57,000 people in the United States in 2023 — almost 10% of all cancer deaths. 

As a result, hematologic specialists frequently have to grapple with dilemmas related to the end of life. This, of course, isn’t unusual in medicine, especially the field of oncology. But blood cancer poses unique challenges in its final stages, and research suggests that hematologic specialists are especially likely to pursue intensive treatment for patients with terminal disease. 

Here are five things to understand about navigating end-of-life care in blood cancer. 

1) It’s Harder to Know When the End Is Near 

In patients with solid tumors, it can often be fairly simple to determine when a patient is reaching the final stages of illness. “Once a patient has metastatic disease, it is usually not curable, with few exceptions,” said David Hui, MD, MSc, professor of general oncology and palliative, rehabilitation, and integrative medicine at the University of Texas MD Anderson Cancer Center in Houston, in an interview. 

At that point, he said, the focus of treatment can transition from curative care — with the goal of getting rid of the cancer and restoring health — focusing on prolonging life, reducing symptom burden, and improving or maintaining quality of life. 

But in blood cancer, the process is more complex. “There may still be a chance of cure, even with widespread disseminated disease and even in heavily pre-treated patients,” he said. 

Matthew Frank, MD, PhD, an assistant professor of medicine in the Division of Blood and Marrow Transplantation and Cellular Therapy at Stanford University, Stanford, California, said that therapy has advanced so far that some patients can go through 10 lines of treatment. “We’ve never had this many options,” he said in an interview. “To truly know you’re at the end takes a lot of work.”

2) Hematologists Treat Terminal Patients More Aggressively 

Research suggests that patients with blood cancer are more likely than those with solid tumors to undergo intensive therapy at end of life. Hui led a 2014 study that found patients with blood cancer are more likely to have chemotherapy treatment, emergency room visits, and intensive care stays during the last 30 days of life. 

Research also suggests that hematologic specialists may be less comfortable with discussions about death and hospice care than are their fellow oncologists. Hui led a 2015 study that surveyed 182 oncologists about end-of-life matters. Hematologic specialists were less likely than their solid-tumor counterparts to be comfortable discussing death and dying (72% vs 88%; P =.007) and hospice referrals (81% vs 93%; P =.02). They were also more likely to feel as if they failed if disease progressed (46% vs 31%; P = .04).

3) Start End-of-Life Discussions Early 

“We know from the literature that the more patients understand about their prognosis and the serious nature of their illness, the less likely they are to consider life-prolonging therapies,” Hui said. “It’s not easy to help them understand their illness, navigate the uncertainty, and make these emotionally laden decisions.”

Indeed, research suggests that about half of cancer patients don’t have conversations about end-of-life matters until it’s too late, said Anthony L. Back, MD, director of palliative care at the Seattle Cancer Care Alliance, and professor of medicine/oncology at the University of Washington in Seattle, in an interview. “They end up in the hospital and aren’t able to speak for themselves.”

The best approach is to discuss patient wishes early in the treatment process, he said, even though “it feels very awkward” to confront someone with the prospect of death. It can be a good idea to discuss patient wishes whenever a new line of therapy is started, he said, “even when it’s very clear that everyone thinks the next round of treatment should be happening.”

Early discussions of end-of-life wishes are especially important for patients with acute myeloid leukemia and rapidly growing lymphomas that can quickly become terminal. “Give the patient a sense that things can change suddenly so advance preparation is really helpful,” Dr. Back advised.

4) Patient Priorities Differ and ‘Brutal’ Honesty Matters

Patients look at end of life differently, making it especially important to talk to them about what they’re feeling. Patients in their eighties may focus on their legacies and wrapping up their lives, Back said, whereas “50-year-olds will often feel like they’re being forced to walk away from responsibilities to raise their kids and provide for their families.” Young people, faced with the prospect of an early death, “may feel totally ripped off.”

In all cases, Frank prefers to be “brutally honest” with patients with poor prognoses — “I don’t think there’s a safe option that I can give you” — while urging them to get a second or third opinions if they wish. And he often adds that clinical trials may be options. “I don’t slam doors,” he said. “I gently close them.”

In some cases, the patient makes the call to close a door when Frank would prefer to continue with aggressive treatment. “I have to partner with them and pair the treatment options to what their values are,” he said. “If you’re saying you’re done, we’re done.”

5) Patients May Fear Losing the Connection to Your Team 

“A lot of patients feel comfortable seeing you, your nurse practitioners, and your infusion nurses. The team has taken on huge importance to them, and they’re like part of the family,” Back said. “They worry if they say no to treatment, all of that will stop and they won’t come back to clinic anymore.”

In addition to worrying about losing the expertise and resources of the clinic, patients may also feel as if they’re being abandoned, he said. “They’re very aware that other patients never come back and never see the doctor.” And that’s not all: Patients may even fear that they’ll disappoint their medical team by stopping therapy.

The best strategy is to talk with the patient about what the path forward will look like, Back said. “If you say, ‘I’ll see you in a month,’ that means they haven’t lost contact. That can be tremendously reassuring.”

Randy Dotinga is an independent writer and board member of the Association of Health Care Journalists.