When a dying person is in denial?

Published in the June 2007 issue of Today’s Hospitalist.

Your patient is dying of cancer, but none of his family members wants to talk about the death that is clearly looming. They won’t even utter the words "cancer" or "death," and they all tiptoe around the issue.

But one day, when you’re in the patient’s room and he is being served lunch, he remarks that his coffee is cold “and his wife hits the ceiling. What kind of hospital is this, she asks, almost yelling, that can’t even serve a hot cup of coffee?

If your instinct is to jump up and get the patient some more coffee, you’re not alone. But according to Steven A. Levy, MD, an expert on end-of-life care issues, you’re probably not confronting what’s really going on with the patient’s family.

Internists and hospitalists, who are creatures of logic, are likely to address the issue at hand. "It takes a little bit of intuition and sensitivity," says Dr. Levy, "to realize that the coffee is not really what’s on their mind."

Take advantage of opportunities
What is on the mind of the patient’s wife, and how can you as a hospitalist get at those issues? According to Dr. Levy, who is clinical professor of internal medicine and course director of medical ethics and public health at Lake Erie College of Osteopathic Medicine in Erie, Pa., these situations require some practice and finesse.

That’s because while hospitalists tend to be highly logical, family members facing the death of a loved one are anything but. Physicians need to take advantage of opportunities that present themselves, which may come in the form of a complaint about what’s on the lunch tray.

"You need to learn, either by trial and error or by having someone tell you, when the complaint isn’t the issue, so you can handle it differently," explains Dr. Levy. "You might get some fresh coffee, but you also need to use that as an opportunity to say, ‘Let’s talk about what else is on your mind.’ "

Focus on the family
Dr. Levy says he tries to find an appropriate time to talk to family members outside of the patient’s room. He’ll sit them down in a private, quiet conference room and say: "We’ve been spending the last two weeks talking about your dad, but I want to talk about how you’re doing. Tell me how you feel right now, what’s going through your mind."

The idea is to completely shift the emphasis and give family members time to say what’s on their mind, to open up and talk about themselves.

"That gives them an opportunity to tell me what their fears are, which is almost always that mom or dad is dying," Dr. Levy explains. "Once we get that on the table, once someone uses the word ‘dying’ or ‘death,’ we have an opportunity to move forward and talk about a plan."

It’s important to try to refocus the conversation, Dr. Levy says, because families can be determined to not acknowledge that their loved one is dying.

"People want to hide from that," he explains. "Sometimes I have to say, ‘I’m very sorry, and maybe you didn’t realize this or maybe you haven’t fully come to grips with this yet, but mom or dad is dying.’ That can be a very traumatic moment."

Move toward discussing goals
But what happens when that moment isn’t successful? Dr. Levy acknowledges that despite his best efforts, some family members do not fully accept that death is imminent. A clear sign of denial, he says, is when family members focus on problems, not goals.

He describes a patient whose 40-something sister had advanced multiple sclerosis. The MS patient had bedsores and was being tube-fed, yet none of her providers had taken the time to talk to her sister and explain that the patient was dying.

As a result, Dr. Levy says, the sister was more worried about whether her sister’s EKG was okay and her blood test was being monitored. "She chose to focus on a series of little things that in the big picture don’t mean a whole lot," he says.

When Dr. Levy talked to the sister, he was surprised to hear that she knew that the patient was dying. At that point, he had a frank conversation about how she was trying to help her sister.

"I said, ‘Knowing that your sister is dying, why do you keep asking the doctor to do X, Y and Z?’ I told her that most of the things she was trying to do for her sister weren’t going to help," Dr. Levy recalls.

"That was an epiphany for her," he explains. "She didn’t realize that her own behavior was not the type of thing we do for people who are dying, that we need to focus on comfort care."

After that conversation, the difficulties the medical staff were experiencing with the sister disappeared. "After weeks of difficulty, we knew exactly what we were doing," says Dr. Levy. "We were on the same page."

An obligation to patients and families
While these conversations do become somewhat easier, Dr. Levy says, they still weigh on him heavily before, during and after he talks to patients’ families.

"I’ve had some practice and have an idea what to expect," he explains. "I’m also not scared by tears any more. Everyone thinks that it’s awful to make the patient’s family cry, but that can be a good thing." In fact, he adds, it’s a much bigger problem if the patient’s family isn’t crying. "It takes a little while to get used to that, and I make sure I have tissues in the room with me."

Regardless of how uncomfortable the conversations can be, he says it’s his duty “and the duty of all physicians “to address these issues. While he was called in to care for the woman with multiple sclerosis when her neurologist didn’t feel comfortable treating her diabetes, Dr. Levy says it was his moral duty to address the problems the sister’s approach was causing.

"When you’re on a case like that," he explains, "paying attention only to the diabetes is borderline irresponsible. You’ve got to have some of these other discussions with patients."

Rewarding work
These are key conversations for hospitalists to have, Dr. Levy adds, because so many Americans die in the hospital, not at home or in a physician’s office. "All of these issues, from living wills to end-of-life communication, are tailor-made for physicians who spend their professional lives in the hospital."

Such conversations, while difficult, are also extremely rewarding, perhaps more so than any other part of medical practice. "In my 20 years of practicing medicine," Dr. Levy claims, "the people who have been most grateful have been the family members of patients who have died."

Guide a patient through a heart attack or kidney failure, Dr. Levy says, and you’re lucky to get a thank you and a handshake. Because patients come to the hospital expecting to be cured, he says, they aren’t particularly surprised “or grateful “when they recover.

Help a family get through the death of a loved one, on the other hand, and you can expect to be moved by their response.

"If you can ensure that someone dies peacefully, surrounded by family and friends, without a lot of tubes and without pain and suffering," Dr. Levy says, "their families will be the most grateful people you’ll ever meet. You get hugs and cards, and at Christmas people send you apple pies."

Edward Doyle is Editor of Today’s Hospitalist.

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