‘Don’t Wait Too Late to Make End-of-Life Decisions’

BROOKVILLE, NY—“Most of us wait until it’s too late to make decisions on end-of-life care,” Robert C. Cassidy, PhD, said at a conference on that subject. “But somewhere out there is an abyss, and we better start knitting a parachute before we get pushed out of the plane.”

Dr. Cassidy, director of medical ethics at Schneider Children’s Hospital and Long Island Jewish Medical Center, spoke at a meeting sponsored by the New York Citizens’ Committee on Health Care Decisions. This group promotes citizen involvement in forming health care policy, and the meeting explored ways in which patients can better control the environment in which they die.

“Because when and how one dies is so unpredictable, you need to have an adjustable plan,” Dr. Cassidy says. “Death used to come swiftly and at an early age. Today a patient’s life can be shaped by an illness at the end when the person’s support services may be fragmented, leading to feelings of isolation and fear.”

Good palliative care at the end of life is essential for a peaceful death and for the family’s peace of mind, said Maureen Haralabatos, a nurse practitioner who heads the Palliative Care Service at Stony Brook University Hospital.

“How a loved one dies is forever remembered by the family,” she said. “Our primary concern is to control pain. DNR does not mean ‘do not treat.’ Palliative care affirms life but sees death as a natural process.”

Ms. Haralabatos said that oncologists have often been reluctant to refer patients to the Palliative Care Service because they believe they “know how to care for this type of patient,” but now more doctors are seeking out the Service for their patients earlier in a terminal illness. Since Stony Brook began its program 3 years ago, Ms. Haralabatos and her staff have cared for about 300 patients. She noted that only about one-quarter of the patients she sees have filled out health care proxies.

Ms. Haralabatos considers the family of the dying person her patient as well. When she meets with the family, she reassures them their relative will be comfortable and not in pain. “I use the ‘D’ word,” she said. “I tell them the patient is dying. Doctors often use euphemisms or avoid the subject so that family members come away relieved that ‘at least the doctor didn’t say Mom is going to die.’”

To set the stage for a family’s farewell to a loved one, Ms. Haralabatos lowers the bedrails so the family can draw near, and she touches the patient so relatives know they can do the same. She dims the monitors, turns off the alarms, and slips away to the nurse’s station where she can observe the patient’s status. When the patient does expire, she reappears to break the news that the loved one is gone.

Hospice care offers another option for patients with terminal illness and can be offered in many different settings. Hospice goes where the patient is, said Paul Brenner, chair of the New York State Hospice Association. The hospice team assesses a patient’s physical, psychosocial, and spiritual needs. Based on these factors, the patient, physician, and family can form an end-of-life care plan.

The range of hospice services includes nursing, home health care, physical therapy, chaplaincy, and art and music therapy. Hospice makes liberal use of lay volunteers with no defined role, Mr. Brenner said. Patients may open up and speak more freely with these volunteers.

Hospice programs also play a role in helping the patient’s family get through the dying process, and the hospice staff generally stays involved in the life of the family for a year after a death.

Mr. Brenner said that the average patient stays under hospice care for just 18 days. This short time-frame is difficult on the patient, family, and staff, he said, since it turns hospice care into a brink-of-death intervention.

“Ideally, people would come to us 6 months before death,” he said. “We need to educate doctors and patients: The worst time to find out about hospice care is when you need it.”

Doctors often are reluctant to refer patients to hospice sooner because it means the end, Mr. Brenner said. To encourage earlier hospice care, some hospices call their program something more innocuous like “Pathways,” Mr. Brenner said, and admit patients who are expected to live up to 2 years, during which time they continue to receive treatment.

Advice on Planning for End-of-Life Care

Recommendations from a conference sponsored by the New York Citizens’ Committee on Health Care Decisions