November 29, 2021 by John Fernandez
Palliative Care: Expanding Efforts to Comfort Seriously Ill Patients
When Mariana Khawand-Azoulai, M.D., was in medical school at the University of Florida, she spent time working at the area’s Veteran’s Administration hospital. There, she saw a palliative care team in action, and something clicked for her. She decided to make palliative care her life’s work. “I thought the way they cared for patients was so compassionate, so personal and practical,” she said.
Palliative care focuses on bringing comfort to patients with a life-threatening, chronic or serious illness, such as cancer. This approach provides comprehensive management of a patient’s physical, emotional, practical, cultural and spiritual needs — while also offering potentially curative treatments. (November is National Palliative Care Awareness Month.)
Together with Suleyki Medina, M.D., Dr. Khawand-Azoulai is one of two attending physicians working to build an outpatient palliative care team at Miami Cancer Institute at Baptist Health South Florida. The group will soon include two nurse practitioners and a social worker, providing services in a team-based approach alongside specialists in nutrition, physical therapy, social work, psychology and more.
“There are very few outpatient palliative care programs in the country — most are hospital based,” Dr. Khawand-Azoulai noted. The program will function under the direction of Leonard Kalman, M.D., deputy director and chief medical officer of Miami Cancer Institute.
The team approach is critical to making the greatest impact in the lives of patients and their families, Dr. Khawand-Azoulai said. “It’s very multidimensional so we can give the patients ‘whole person’ care,” she explained. “Miami Cancer Institute has been very forward-thinking in setting this up this way. They are emphasizing that extra layer of support.”
Palliative Care Ideally Begins at Diagnosis
In addition to the outpatient program being developed by Dr. Medina and Dr. Khawand-Azoulai, all Baptist Health hospitals have palliative care teams available for patients who have been admitted. The teams of physicians, nurses, social workers and chaplains are trained to address a wide range of concerns. They teach patients and families about the disease process, discuss treatment alternatives, assist with pain management, and provide counseling and spiritual support, if desired.
“We empower patients to participate in their treatment by helping them to understand their options,” Dr. Khawand-Azoulai said.
Palliative care can be provided at any stage of a disease, but ideally it begins with diagnosis, when patients and families are grappling with many questions and concerns.
Care plans are individualized, depending on the wishes of the patient. And that can require some honest discussions that will result in setting goals for treatment, Dr. Khawand-Azoulai said. “We’re the ‘difficult conversation’ people. I try to help patients explore what’s important to them, so we can proceed with treatment that is most in line with their values.”
Many people confuse palliative care with hospice care, but the two are not the same. Hospice care is offered to patients who may not have long to live or patients who decide to discontinue treatment. The goal of palliative care is to enhance quality of life as much as possible for patients with a serious illness. “Hospice care is a kind of palliative care,” Dr. Khawand-Azoulai explained, “but not all palliative care is hospice care.”
Does Palliative Care Make a Difference?
Research has shown that palliative care and its many components are beneficial to the well-being of patients and their families, according to the National Cancer Institute, which is part of the National Institutes of Health. A number of studies have shown that patients whose symptoms are controlled, and who are able to communicate their emotional needs, have a better experience with their medical care. Their quality of life and physical symptoms improve.
Additional studies cited by the Institute of Medicine have found that patients whose physical and emotional needs are not addressed are less able to adhere to their treatment and manage their illness. “Cancer patients need more than just oncology care,” Dr. Khawand-Azoulai said.
Although a big part of palliative care — not only in cancer patients but in all patients — is managing and providing relief from pain, palliative care also addresses symptoms such as nausea, fatigue, altered mobility, shortness of breath, loss of appetite or sleep problems.
Helping patients deal with their challenges is incredibly gratifying, Dr. Khawand-Azoulai said. “It’s like holding the hand of the patient and the family through a difficult time,” she explained. “Our job is to ease the suffering that comes with serious illness, not just with a focus on the physical, but also emphasizing practical, emotional and spiritual concerns.”
Palliative professionals develop relationships with many of their patients and families, which can be very meaningful. “All through med school I wanted to do ‘whole person’ care. I’ve always been interested in the person, their life, who they were before this disease. I wanted to focus on the person, not just the disease,” Dr. Khawand-Azoulai said.
While there are emotional challenges to the job, she said, “what keeps me going is that I feel I truly help patients and their families. I get to help them feel as good as they can.”