From left: R. Sean Morrison, MD, moderator of the “Partners in Care” event, with panelists Elizabeth Gilbert; Jennifer Homans, PhD; Cardinale Smith, MD; and Michael Ausiello—who each cared for a seriously ill loved one.
They spend an average of 20 hours a week in an unpaid, emotionally draining job. One in three is in poor health, and 97 percent say they need more help. Who are they? They are the 65 million Americans who provide care to an adult relative at home, and a panel discussion called “Partners in Care” was held on Monday, November 5, to shine a light on their experience.
“When we think about health policy, when we think about medical coverage, we always think about the patient who is living with serious illness, and we forget their caregivers. They need help, as well,” said the moderator of the panel, R. Sean Morrison, MD, the Ellen and Howard C. Katz Chair of the Brookdale Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai.
The panel was held at the Lotos Club in Manhattan, one of the nation’s oldest literary clubs, and it consisted of three noted authors who had each cared for a seriously ill spouse or partner: Elizabeth Gilbert (author of Eat, Pray, Love); Michael Ausiello (author of Spoiler Alert: The Hero Dies); and Jennifer Homans, PhD (author of Apollo’s Angels: A History of Ballet); along with Cardinale Smith, MD, Associate Professor of Medicine (Hematology and Medical Oncology), and Geriatrics and Palliative Medicine, who cared for her father when he was dying of cancer. The event was sponsored by longtime Mount Sinai donors Margery and Stephen Riker.
Ms. Gilbert told the story of caring for her partner, Rayya Elias: “This was an incredibly powerful person, even though she was 87 pounds,” who decided to move out of hospice to live near friends in Detroit just months before she died in January 2018 of pancreatic cancer. Ms. Gilbert called her years as a caregiver “the most brutal, beautiful experience of my life.”
Dr. Homans spoke of trying to write a book, raise her children, and care for her husband, who was living with amyotrophic lateral sclerosis (ALS). “Palliative care meant introducing someone else who could stand with us among all those whirling parts—this third person who was calm and knowledgeable and could steady the ship for a moment.”
Palliative care focuses on treating the symptoms, pain, and stress of a serious illness for patients and their families. It is appropriate at any age and at any stage in a serious illness, and unlike hospice, it can be provided alongside curative and all other appropriate medical treatments. “It truly is whole-patient care, and we offer the same support for loved ones,” Dr. Smith said.
The nation is headed for a shortage of caregivers, Dr. Morrison said, adding that “2030 is an important number in health care.” That is the year when, for the first time in history, there will be more people in the world who are 65 and older than people who are under 21. Increased public awareness and health policy reform will help alleviate the caregiver shortage and burden, he said. The Brookdale Department, which hosted the “Partners in Care” event, strives to advance this conversation, and to support seriously ill people and their caregivers through multifaceted work, from clinical care, to training doctors, to pursuing research.
“There is no coverage for caregivers in our nation’s health system, and that is fixable,” Dr. Morrison told the audience. “That means asking your local representative to make it an important policy issue. Become involved in one of your palliative care organizations, become a voice, and become active.”