The Magic Words: On Goals and "Giving Up"

I’ve been a practicing physician for 20 years. In this series, I share some of the best practices and helpful phrases I’ve learned for talking about bad news and end of life issues with patients.

Get to the Goals

At the end of part one, we got to a patient’s starting point. After that, one can ask about end-of-life preferences, but again, not by asking about CPR and ventilators like you’re reading the a la carte menu at a restaurant. Many times I’ve seen doctors ask patients if they want CPR and vehemently disagree with their choice. But you don’t have to offer inappropriate options; I believe we should not. We don’t ask dying people if they want open heart surgery, because it would be nonbeneficial and harmful. So why offer CPR to the family of a 99-year-old patient with advanced dementia who could not benefit from it?

Sometimes I have to take things “off the table” explicitly: “We have many therapies here, like organ transplant. But we can’t do an organ transplant for your father’s kidney failure because it is a symptom of the dying process. Likewise, we know he will live better and probably longer if he doesn’t get intensive care. So that is a therapy that is not available right now.” Once I had a patient with an unstable neck, near death from five problems, who was offered CPR, and agreed, even though it would paralyze him and leave him to die on a ventilator. I managed to walk that back, but it took me three days.

Goals Prevent Pain

How to prevent that painful discussion and bad decision? The answer is to seek goals. “Do you want CPR?” Many will answer, “yes.” So instead I ask, “Tell me how you would like to spend your remaining time / last days. What does that look like to you?” Other good questions are, “What gives your life meaning?” and “What are your hopes and fears about the rest of your life?”

No one has ever told me they want to spend their last hour getting CPR in an ICU while on a breathing machine with no privacy and no proper family visitation. Almost everyone says, “I hope that I go to sleep peacefully, at home, with my family present,” or some variation of that. Then it’s easy to reply, “Let me tell you how I can help make sure that happens.” You outline what hospice means (generally speaking, no more invasive procedures, with exceptions; avoid hospitalization, manage symptoms instead of actively fighting the underlying process, focus on comfort. Continuing usual medications is fine (for some, keeping a little cholesterol pill is important, even though you can’t live more than a week or so without kidney function).

They don’t need to refuse every item on that a la carte menu of ICU care. You just need to get to the goals, which helps you focus on what’s important.

Flip the Script of “Giving Up”

I meet many patients who are wedded to the fight. Their identity is “a fighter.” I recall an AIDS patient who had lived decades longer than expected, and his expectation, almost a condition of transitioning to hospice, was that we acknowledged that HIV didn't get him. He died of cancer (an AIDS-related cancer, but I wouldn’t have told him that if you’d threatened to pull out my fingernails). Or consider the child or spouse who’s cared for a sick parent or loved one for 5, 10, 15 years… full time. They’re a caregiver. Who will they be after the patient dies? (No one says this out loud, but if the task is keeping someone alive forever, the only possible result is you will be “a failure.” So that cannot be the task.)

Such patients may resist a peaceful natural death and phrase it like this: “I don’t want to give up the ICU option… I’ll miss out on several more days of life… I won’t be able to get CPR on hospice.” I point out the difference between their stated desire for a peaceful death by flipping the script (changing the wording) of the options: “If you get intubated, you will lose the chance to die peacefully at home. You have to give up talking with loved ones. You’ll miss out on the privacy, dignity, and comfort of being at home.” Then you give the advantages: “Enrolling in hospice will mean more specialists devoted to managing your symptoms. You’ll gain more control about how you spend your time. Many patients feel better and rebound off toxic therapies, given a chance to rest. You can keep taking usual medicines but add extra measures to control symptoms.”

Those magic words make it easier for fighters to fight … a different way.

When Palliation Is Fighting

There’s no denying, however, that stopping active treatment will feel like surrender to some patients. Their identity is in the fight. They want the next treatment, the research trial if they can. This isn’t wrong! I don’t want to die either. But when dying is unavoidable, and my patients are suffering needlessly, I find it helps to tell fighters things like this: “I know you want to do everything you can to fight your illness. They’ve done research to see what the effect of palliative care is for cancer patients like you. They figured it would help people live better, and it does. But it also helps people live longer. Pain and suffering wear you down. They keep you from eating, making appointments, getting out of bed. Relief is crucial for you to continue fighting. So I’m worried if you don’t start palliative care, you’ll miss out on treatment proven to extend your life. You’re a fighter—let’s fight this with every tool we have.”

This is helpful to say. It’s also true.

Note: If I say, “you need to do this,” patients can just disagree: “No, I don’t.” But if I say “I’m worried that ____,” they don’t, because it’s my view, and I’m expressing concern.

Thanks for reading. It’s been quite a journey and privilege taking care of amazing people at some of the critical and vulnerable moments of their lives. I hope these pieces have been helpful to those facing cancer and other serious diagnoses. In the next entry in this series, I’ll review the basic steps—courtesies, really—we can take to make tough discussions easier.