For many of us, having a signed, notarized advance directive or living will engenders a sense of security. Once our medical wishes are set down in black and white, we feel confident they will be honored if we become incapacitated.
But David Barile, MD, thinks such confidence is problematic. A geriatrician with the University Medical Center of Princeton at Plainsboro (NJ) and the medical director of the New Jersey-based advocacy group Goals of Care, Barile says what many don’t realize is that end-of-life requests must match the circumstances of their medical condition. Otherwise, doctors may make treatment decisions that conflict with the person’s goals.
A national program called POLST—an acronym for Physician Orders for Life-Sustaining Treatment—has been adopted in several states, including Barile’s home base of New Jersey. The program specifically addresses end-of-life medical treatments. According to the POLST website, the aim is to “improve the quality of care people receive at the end of life.” How? Doctors complete a form based on discussion with the patient or legal surrogate. POLST goes beyond the standard Do Not Resuscitate (DNR) order to cover interventions that apply specifically to the patient’s current condition, prognosis and desires.
Even so, Barile says some POLST forms do not highlight those desires clearly enough. He has crafted a version for New Jersey that he believes will provide more personalized end-of-life care that considers whether aggressive tests and procedures really meet the goals of a particular patient. In 2012, his POLST form was in its final phase of testing in the state.
Barile’s efforts, which have gained national attention, arise from a deep-seated conviction that the treatment of older patients in this country must be improved. He spoke with the Silver Century Foundation about his advocacy efforts.
What attracted you to geriatrics as a medical specialty?
I grew up with my grandfather in the household. I think that if you ask many geriatricians about what inspired them to do their work, you’ll find that most talk about a good experience with an older person.
Every elder is different. There’s no average 85-year-old. Their physiology is different. Their presentation with illness is different. Most younger patients present in a typical fashion when they become sick, but not frail elders. For example, people’s organs age relatively independently of each other. So someone may be 90 and have relatively healthy kidneys but a bad heart. There are a lot of atypical presentations in elders. You have to be astute and creative about diagnostic approaches.
What inspired your approach toward older patients?
I’m not a politically active person, but I really dislike ageism in decision making in our culture. We live in a youth-oriented culture and the mentality is everywhere, even in medicine. I don’t think older patients have enough of an advocacy support system behind them. I think they get exploited.
Can you tell us why advance directives commonly used in end-of-life care need to be updated with POLSTs?
Advance directives haven’t meaningfully affected decision making when it comes to end-of-life care. Most people don’t have an advance directive, and when they do, it’s rarely completed in the context of the patient’s illness, prognosis and personal goals. It’s usually filled out by an attorney or social worker, who might ask a person, “What do you want?” But this isn’t discussed in the context of what’s medically realistic. A doctor has got to weigh in.
The POLST form is part of a doctor’s order sheet and not something a patient ordinarily sees. It’s designed for the final year or two of life and its chief advantage is that it’s portable across health care settings. It’s interinstitutional. If a doctor first completes it, say, in a hospital emergency room, it remains active during the hospital stay, during the ambulance ride to a skilled nursing facility, and at that facility. Later, it can act as a Do Not Resuscitate order on the refrigerator door after a patient returns home.
Although you, like many physicians, consider the POLST form to be an improvement, you also advocate revising it. Can you explain why?
The revised POLST form will be a template for the order of the discussion at the bedside. By rearranging the order of the questions, it de-emphasizes code status. It starts with goals of care. Instead of first asking, “What do we do if your heart stops?” we start with the patient’s hopes for the future.
Then it moves on to medical interventions. We’ll say, “Well, if that’s your goal, this is what we recommend”—perhaps calling an ICU doctor or a pulmonologist to work on a cough. Or even, “Let’s call the hospice team to make you comfortable in your final stage.” We make recommendations for care in the context of the patient’s condition. It’s essentially an effort to align patients’ goals with available therapy.
We came up with the new format with the help of many people throughout the state, including ethics committees and bioethicists. We hope that after it’s adopted in New Jersey, we can take it nationally.
Was there an “Aha!” moment that led you to advocate for reform of end-of-life care?
About eight years ago, I was asked to consult on an older woman with renal failure who needed dialysis. She was cantankerous. Her position was, “No way am I getting dialysis. Get me out of here!”
I walked in there a little afraid. I simply asked, “What are your hopes for the future?” She sighed and said, “I just want to make it to my grandson’s bar mitzvah.” I told her I could get her to the bar mitzvah, but she’d need dialysis in order to go. After the ceremony, the choice to continue dialysis would be up to her.
After I walked out of the room, I was struck by what had just happened. I had asked a benign, open-ended question, and it worked. It was an important encounter because it set me on the path to organizing medical care at the bedside to help patients achieve their goals. That’s patient-centered care.
How do you determine what the patient’s goals are?
A common mistake doctors make is they say, “This is what I’d do for my mom or dad.” But this distracts from the value system of the patient.
The first step is to determine the patient’s mental capacity. If there isn’t any, the second step is to find out if there is an instructional statement such as an advance directive, living will or written note indicating power of attorney. We use whatever’s there. The next step is to ask a family member, “You know this person; what would he or she instruct us to do?”
Sometimes I’ll leave a chair empty in the room when I meet with family members. If the conversation is stuck, I’ll say, “Let’s pretend your mom is sitting there and listening in on this. What would she instruct us to do?” Most of the people around the table stop and think what their mother would want. Moving forward, they feel better about decisions, and that’s important.
One way or another, I attempt to get patients involved in decision making. Even if I sense that they don’t have full capacity—they may not know what today’s date is or where they are—there may be enough of a self to talk about preferences. I try to get those values, then include them in the discussion with family members.
How does patient-centered care work out in practice?
Once, within one month, I had two high-functioning patients in their 80s. Each one had suffered a stroke. They were both unable to ambulate, had garbled speech and needed a feeding tube to sustain life.
One was a gentleman, a widower, who had been married to a concert pianist. His joy was listening to her recorded music. His goal was to return home with hired help and a feeding tube so he could continue to listen. He had surgery to put a tube in place, then went home.
The other patient was a botanist who spent every waking hour in her garden. Her goal was to return to vigorous gardening. But that goal wasn’t achievable. We told her that the best-case scenario was probably living for a couple more years in a nursing home setting. She said, “Thanks, but no thanks,” and chose the other option, home hospice with palliative care instead.
What do you find most rewarding about your work?
Even when there’s a sad outcome, patients are grateful for a candid discussion. They’re so relieved that finally someone is willing to discuss their goals as well as their symptoms, prognosis and treatment. Their gratitude is very rewarding.