by Rosemary Baughn, Senior Vice President, VNSNY Hospice and Palliative Care
“It’s not about helping someone die. It’s about helping a patient continue to live, up until the very end.”
The fifty-nine-year-old patient, in the final stages of breast cancer, was experiencing great pain in her arm. Earlier in his career, Dr. Varun Doddapaneni might have focused on the pain itself, the medical causes, and remediation of the patient’s lymphedema.
But because he was caring for the patient in her home, in the context of her daily life, he understood the deeper meaning of the pain that needed to be attended to: it kept her from playing her beloved violin and sharing music with her husband, a fellow musician.
Doctors think about pain but don’t always think of the daily battles that our patients are facing,” says Dr. Doddapaneni. “For her, it wasn’t just that her arm hurt. It was that she could no longer play the violin, which had brought her so much joy throughout her life.”
Dr. Doddapaneni’s shift in perspective — his deeper appreciation for end-of-life care as fundamentally human care — came when he embedded with a home hospice team as part of the VNSNY Hospice and Palliative Care Physician Fellowship Training Program. “In a hospital setting, we tend to reduce a patient to what is wrong — my cancer patient on the ninth floor, the COPD patient down the hall,” Dr. Doddapaneni reflects. “But visiting patients in their home, I quickly learned that listening to and learning about them, meeting their families, seeing pictures on the wall, you come to understand their personalities, their traits, what makes each of them a unique person.”
Our training program, one of the largest in the country, “embeds” each fellow with a designated VNSNY Hospice team, where they provide hands-on end-of-life care under the supervision of a team physician and in collaboration with hospice nurses, nurse practitioners, social workers, and spiritual care counselors. This year’s class, the largest in the program’s 13-year history, is made up of 45 fellows from eight New York-area academic medical centers and includes physicians, nurse practitioners, a social worker, and a doctor of pharmacy.
The program helps meet the demands of the rapidly growing hospice and palliative care field, which will continue to grow as the population ages. In addition, as medical care shifts from acute, episodic care to comprehensive care management, particularly for patients with chronic conditions, the team-based holistic approach of hospice and palliative care is becoming an increasingly important skill set for clinicians, regardless of their field of practice.
End-of-life care is now a required part of medical school curricula, but embedding with an interdisciplinary home hospice team adds another dimension to a clinician’s training. “When you go into a patient’s home, you don’t have the comfort of your white coat anymore,” notes Dr. Ritchell Dignam, Chief Medical Officer and Fellowship Program Director for VNSNY Hospice. “You can’t rely on technology, on ordering blood work, a CAT scan, all of those interventions,” she says. “In the home, you come to understand who the person you are caring for really is and how their family dynamic works. You have to develop your ability to listen to the patient.”
Dr. Doddapaneni, who completed the VNSNY Hospice program late in 2017 and is now a fellow in palliative medicine at Lincoln Medical Center in the Bronx, developed a keen appreciation during his training for each member of the interdisciplinary hospice team and how they work together.
As medical care shifts from acute, episodic care to comprehensive care management, the team-based holistic approach of hospice and palliative care is an increasingly important skill set for clinicians.
He learned volumes, he says, from the VNSNY hospice nurse who delivered excellent medical care, but also offered something even more invaluable: a compassionate heart. “What really struck me was that whenever she walked through the door, she seemed to know everything about the patient’s life,” he recalls. “She knew about the newborn granddaughter, the upcoming family wedding. She asked not what your symptoms were but how your day was going. She made sure everyone on the team realized that we were caring for a human being.”
When caring for the musician with breast cancer, the team’s social worker made a point of taking regular walks outside with her husband on each visit. “The social worker was quick to realize that the couple’s whole life revolved around one another,” Dr. Doddapaneni explains, “and the husband was going to need a lot of support.”
The final team member Dr. Doddapaneni embedded with was the spiritual care counselor; he admits that he didn’t give this aspect of end-of-life care its proper due — until he saw it in action. He had joined the pastoral care counselor in visiting the home of a patient with end-stage lung disease, who was on oxygen and desperately short of breath. “I automatically went into my ‘I’m a doctor, this is what I’d do’ spiel,” he recalls. “Then, the spiritual care counselor said, ‘Let’s pray together.’”
The transformation was astonishing. “The patient had been gasping for air the whole time we were in the room,” Dr. Doddapaneni says. “As they started praying, her breathing calmed down. By the end of the psalm, she was joining him in speaking full sentences. It was amazing to witness — proof of the power of prayer.”
Dr. Doddapaneni adds that he apologized to the spiritual care counselor after the visit. “I told him I’d put off embedding with spiritual care,” he says. “As it turns out, it was one of the most profound aspects of hospice care. Now, when I talk to my patients about the value of prayer, the words don’t feel empty. I know the truth behind them.”
Ultimately, says Dr. Dignam, she hopes that hospice fellows learn that “dying is a part of life, just like being born is a part of life. A good death is really dependent on a clinician giving all possible options to the patient and truly honoring the patient’s wishes. The goal is to live comfortably while you are dying…to make the most of life at the end of life. That’s what I hope we are teaching.”
For Dr. Doddapaneni, that lesson has transformed how he practices medicine and how he aims to support patients who are facing their final weeks and months. “When I talk to my patients now about hospice, I know that it is about helping them gain control over their lives at a time when they feel they are losing control,” he reflects. “It’s not about helping them die. It’s about helping a patient continue to live, up until the very end.”