Palliative Matters: Episode 2

There Is No Magic Bullet or Secret Answer to Difficult Treatment Decisions

Families of patients with serious illnesses are often confronted with difficult decisions about treatment options, especially when none of the options being offered has a high likelihood of success. But the way these choices are presented to families in the hospital, in the midst of stressful medical crises, often leads them to believe that there is one “right” choice and other, wrong alternatives. And it’s the family’s burden and responsibility to somehow figure out which is the right choice that will give them a happy outcome.

In the name of promoting patient autonomy, this “choice” can be a cruel trick question, one with long-term implications for grieving family members. In most cases of serious, advancing illness, there is not likely to be one right answer; whatever is chosen may not change the outcome at all. Still, families can beat themselves up over these impossible choices, with a lingering sense of guilt that they unwittingly let their loved one down.

For palliative care experts John Mulder, MD, and Jason Beckrow DO, whose conversations about their experiences working with patients living with serious illness are the heart of the “Palliative Matters” podcasts at the Trillium Institute (Link: here ), the choices offered to patients and families need some clarification. And palliative care teams can help families sort out what are the real options—and the implications from these various choices.

At this point in the patient’s journey, there is a very good chance that there simply is no magic bullet—no efficacious treatment choice that can be found behind Door Number One but not Door Number Two. The most promising treatments, based on existing medical research, most likely have already been offered and found not to be helpful. Second- and third-round alternatives will not have been shown in research to offer a better choice, but they are what’s left when the preferred treatment fails to bring relief.

Instead, it makes sense to try to match medical treatment choices with the patient’s values and what they can articulate about what is most important to them. The key, said Dr. Beckrow, is for the clinician to build a relationship with the patient and family, to achieve a level of trust that the palliative care doctor is looking out for them and trying to honor their values and priorities.

“We delve into what the patient would want—or not want—at this point in time, since the answer may be very different next week or the week after,” he explained in the podcast. “Once you’ve earned their trust, your patients may go with you to very difficult places.”

Navigating Complex Treatment Mazes

Dr. Beckrow sees people beating themselves up over the complex maze of treatment choices they have been asked to navigate—believing that if only they had made every right decision at every step of the way, it would have given them the outcome they sought. “They believe it’s all on them to make those decisions.”

But palliative care teams can help to empower them to understand that there’s not a perfect choice of treatment and they are not responsible for the life or death of their loved one. The goal is to relieve them from having to replay these decisions in their minds after the patient dies.

Otherwise, they can be burdened with guilt, Should I have done this, should I have done that? Did I make bad choices? Could I have done something more? Did I let my loved one die? Am I the one responsible? Those are things they will carry with them for the rest of their lives. But doctors can help them to see that this is a burden they should not have to carry.

People want to feel they left no stone unturned in advocating for their loved one’s medical care. But often there continue to be further treatment options, usually with rapidly diminishing returns in terms of medical efficacy, for any patient. We might think that doctors shouldn’t be offering treatments with little likelihood of success. But they may feel obligated to offer something, anything, so that the family still feels it is fighting for the patient’s life.

In other cases, patients or families may opt for a time-limited trial—to initiate a new treatment with the expectation that if it doesn’t provide improvement within a defined period, it will be discontinued. Another important consideration is what would the patient have wanted done for them relative to treatment choices, especially when they are no longer in a position to speak for themselves.

Palliative care teams take all of the available medical information and translate it into language patients and families can understand—helping them see where they are, what the medical situation is, what their real options are. That way they can make informed decisions that are right for them at this point of time.

“Sometimes I’ll ask: What are you afraid of?” Dr. Beckrow said. “What concerns you the most? They may say: I’m afraid of dying. I’m afraid of what will happen to my kids, or my spouse, after I’ve gone. Others say: I don’t want to be an invalid, bedbound. What’s important to me is … (fill in the blank).”

To put it another way, what palliative care can offer to patients confronting difficult, confusing, unsatisfying medical choices is a Plan B. That is to acknowledge the gravity of a bad medical situation and that medicine can’t always succeed in fixing it. That means appreciating that this current crisis may not end the way they wish.

“We don’t always know what’s going to happen, but it is possible to plan for the worst and hope for the best. Patients may be hoping for a miracle, and that could happen,” he said. But in the meantime, what if the miracle doesn’t happen? How can the life they are living be made the best it can be for as long as it lasts?

Dr. Mulder added that he sometimes says to patients: “’This disease is going to change your life. One way or another, no matter what the outcome, your life is going to be different from here on. But we can still talk about how to move forward with a diagnosis you never asked for, which is part of your new reality.’ I believe in being honest with patients. I’m a big advocate for hope—but I don’t like giving false hopes.”