To those who didn’t know him well, Alexandru Galdau could appear harsh, sometimes even intimidating. He’d lived through hardship growing up in Communist Romania and, throughout his decades working as a builder in this country, had maintained a demeanor of toughness.
But to his wife of 41 years, Adriana, Alexandru was the man with gorgeous blue eyes, a Paul Newman lookalike, the man who took incredible care of his family. Alexandru, she said, “was my rock, my anchor.”
She became concerned when her 77-year-old husband—who always projected unwavering strength—began to feel weak and started to lose his appetite. But Adriana, who lives in Mount Vernon, was completely unprepared for what followed. The couple sat in front of a doctor they’d only just met, who delivered his diagnosis quickly and bluntly: Alexandru had aggressive pancreatic cancer that had spread to his liver and lungs. There was no cure and nothing could be done. The doctor offered chemo, but cautioned that it would only give Alexandru another three or four months to live.
The diagnosis was terrible enough. But it was the way the news was delivered that causes 70-year-old Adriana, almost a year later, to weep when she remembers it.
“I heard someone gasp, and I realized it was me,” she recalls. “Nothing prepared us. It was just shocking. You can’t give someone a death sentence and be so indifferent and cold. Do they take lessons in medical school on how to dehumanize themselves?”
Conversations about the end of life are not easy for anyone—not for health professionals or patients. But today’s medical community is taking a new look at how to improve people’s experience as they face serious diagnoses, an approach that optimally begins well before a patient becomes gravely ill and continues through the patient’s final days of life.
Spurred by the Institute of Medicine’s (IOM) government report on “Dying in America” and fostered by new Medicare provisions that reimburse doctors for taking the time to discuss these issues, the medical community has responded with a new range of tactics on coping better with the end of life. These include improving advance-care planning, focusing on affordability and access, and expanding palliative care both inside and outside the home.
“The report was getting at the need to provide patient-centered care, care that focuses on the patient’s quality of life and their goals for their lives,” says Rebecca O. Johnson, associate director of graduate and professional studies for the End of Life Care Program at Sarah Lawrence College. The program, launched last June as part of the Continuing Education and Professional Studies offerings, trains healthcare providers and community members. Focusing on dignity in healthcare at all ages and stages of life, it provides in-depth training on advance-care planning and end-of-life care.
The new focus is long overdue, say experts in the field. A century ago, before the invention of antibiotics, most people died quickly of accidents and infections. Advances in modern medicine have not only prolonged life but also prolonged dying. About 2 million Americans die annually, but fewer than 10 percent will experience a sudden death due to trauma or cardiac disease. Most people are diagnosed and live for a prolonged period with a chronic condition before reaching the end of life.
Yet, surprisingly, few Americans are prepared for this likelihood. More than 25 percent of adults, including those 75 and older, have given “no thought” to end-of-life care, according to the IOM report. Even fewer have written down their preferences or talked about it with their family or doctors. And though most Americans say they would prefer to die at home while surrounded by family, roughly half of those with chronic conditions will die in the hospital, surrounded by bewildering machinery while having endured invasive procedures that will not improve their prognoses.
A misunderstanding of palliative care has added to the problem. Some people conflate the term with hospice care, or the complete withdrawal of medical treatment. But “palliative care is about living, not dying,” says Julie Buyon, a vice president of the Westchester End of Life Coalition, who has worked with people with serious, life-limiting illnesses for more than a decade. The guiding philosophy of palliative care is respect for what the individual patient wants, whether that’s longevity at all costs, or perhaps living a shorter period of time, but with less pain or heroic interventions. This approach can include anything from sophisticated pain management to a massage and manicure to brighten a patient’s day. Care is dictated by a person’s individual values and goals. Far from hastening death, multiple studies have shown that patients who receive palliative care live longer than those who don’t.
Yet most physicians, long focused on doing everything they can to cure people, aren’t trained to talk to patients about their needs and desires as they cope with life-threatening illness. “We suture and debride and diagnose,” explains Sayantani DasGupta, MD, who teaches narrative medicine at Columbia University and has taught at the Sarah Lawrence Health Advocacy Program. “But in the midst of all of the medical multitasking—checking the labs, talking to the radiologist and ordering the rehab—how do we still remember to make room for storytelling and listening? We need nothing less than a real cultural change.”
In teaching narrative medicine, DasGupta uses literature to help medical students and other health professionals learn how to elicit, listen, and interpret a patient’s story. Such “attending” leads to better medical care, she says. “If you really listen to what’s going on, you can manage someone’s pain better or not order the test they really don’t want or get them home because that’s where they want to be,” she explains. Not only is this approach more humane, but it also saves money.
Deborah Cappell, MD, is a member of the Critical Care Intensivist Team at NewYork-Presbyterian/Lawrence Hospital and the medical director of the Inpatient Palliative Care Program. As an Intensivist, she treats the hospital’s most acutely ill patients. Sometimes in the ICU, says Cappell, the goals of care change, and the kind of care changes based on the patient’s wishes.
“When patients get to the ICU, they are critically ill and generally need aggressive care,” says Cappell. “However, despite this aggressive treatment, a patient’s condition continues to deteriorate sometimes, and it becomes clear they could be dying. If there’s a patient who’s coding, and the limits of what medicine can offer them is being reached, then you have to be able to switch gears and look at the new reality.”
Cappell says that, optimally, end-of-life decisions are best discussed before a patient becomes critically ill. Having the conversation about what kind of interventions the patients do and do not want before going into the ICU helps doctors deliver better care to extremely
Understanding a patient’s desires often requires more than one conversation. Doing it well means understanding where the patient is coming from—how they’ve lived their lives, what they’ve been told about their illness, reviewing what’s been tried, talking about the people who are important to them, and what they value.
“End-of-life conversations are hard for many physicians,” Cappell says. “However, people generally appreciate being told about our understanding of their reality. When bad news is delivered with sensitivity, the tension in the room about the unknown usually goes down, because when people are told about the reality of their condition, they are given the opportunity to voice their fears and plan how they want to proceed. They are given the opportunity to face their prognoses with dignity.”
In response to one of the IOM report’s recommendations, Medicare has begun reimbursing physicians for both training in and conducting end-of-life-care conversations. Once politicized as “death panels,” the regulations went quietly into effect this year.
Westchester reflects the rest of the country in embracing advance planning and palliative care. Just seven years ago, only three hospitals in the county offered palliative care. Julie Buyon remembers calling a large hospital in Westchester to ask about services. Her call was bounced from the president’s office to the volunteer office and finally to the gift shop. Today, every major hospital in the county has a staffed palliative-care program.
The Westchester End of Life Coalition, based in Bronxville, works to expand awareness in the community, holding educational forums, training volunteers and providing resources. At press time, trained volunteers were slated to visit libraries throughout the county to talk to patrons about the importance of having a health proxy. Another initiative will facilitate end-of-life and advance-care discussions at synagogues throughout Westchester. The coalition has created a website, www.livewithcare.org that can help residents prepare for and live with serious illness.
“Palliative care is answering the question, ‘What can we do to make you feel better?’” says Buyon. “And who isn’t deserving of that kind of care?”
As she approaches the one-year anniversary of her husband’s death, Adriana Galdau still struggles. She recalls her son Andrew’s eulogy at the funeral, when he quipped that his father was so tough, the family was sure that even illness would be afraid to go near him. But support from the bereavement staff from the hospital has helped. “They helped me tremendously on the road to recovery, the little things that help you get through the day,” she says. “The paradox of healing is that it’s both holding on and letting go.”
Kate Stone Lombardi is a Westchester-based author and journalist.