Decisions on end-of-life care, no matter the age of a person, are extraordinarily difficult and exceedingly complicated.
But these trying times can be made easier for hospice patients, and even result in a better quality of life in their last months, according to a recent study published in The New England Journal of Medicine.
That was the message delivered to close to 50 audience members Oct. 18 at an Educational Forum on Hospice and Palliative Care at the Wilf Jewish Community Campus in Scotch Plains. Five healthcare professionals and a rabbi discussed the benefits of hospice care and aimed to dispel the myth that “going on hospice means giving up.”
The event was hosted by the Jewish Federation of Central New Jersey and sponsored by its Chaplaincy and Women’s Philanthropy social action committees, together with AristaHealth Services, a major funder of the federation’s chaplaincy program.
A hospice is defined as a program of care in which 70 percent of care is provided at the patient’s residence, according to featured speaker Dr. Beth Popp, an oncologist who is director of the Palliative Care Program at Maimonides Medical Center in Brooklyn. In order for a patient to qualify for hospice, two doctors must certify that the patient is at the point in their illness when, on average, life expectancy is six months or less.
Popp, describing herself as “a doctor for mortals,” said her role was to help patients live as best they can despite having an incurable illness. “We have a meeting and let the patient and their family tell us what is important to them and then try to tailor their medical care to meet these criteria,” she said.
For example, she had a bedridden patient who wanted to attend his grandson’s bar mitzva. A physical therapist came to his home to help him gain enough strength to do it. Another patient with terminal cancer wanted to work as long as she was able. With the help of pain medication, she went to her office until six weeks before her death.
Popp stressed that goals of care may change along the way and that the team of doctors, nurses, and social workers must periodically reassess the plan with the patient and family.
Also affecting decisions are the religious beliefs of patients and their relatives. Popp, an Orthodox Jew who treats many Orthodox patients, urges them to keep their rabbis up to date on their health situation. “They tend to consult the rabbi on care decisions, and it is imperative that he advise them using the latest information,” she said.
Since hospice patients for the most part have stopped treatments, the main intervention is pain management, said Lauren McBride, a hospice nurse at Care One Highlands in Edison. “Once we get the patient comfortable, we turn our attention to the family,” she said. “My mother was on hospice and the beauty of the program is that it lets you have time to say goodbye.”
Sometimes, when doctors recommend palliative care, patients and their loved ones feel abandoned because no one has explained the benefits to them, said Lora Speiser-Goldberg, a social worker at Care Alternatives Hospice. “Once I describe the program, which includes medical supplies, equipment, and medication delivered directly to your door, they are astonished at the amount of items covered under the hospice benefit.”
While patients can elect to go on hospice when they presumably have half a year left to live, most wait until closer to the end — not always the best choice, according to Evan Jasser, director of Family Choice Hospice. “It’s better to go on hospice sooner rather than later, because you can help your family too. It’s a plan of care not only for the patient, but for the family as well.”
AristaCare chief executive officer Sydney Greenberg echoed Jasser’s remarks. “I have seen the difference hospice makes in the lives of our residents. Not only do they benefit from the physical care, but also from the emotional and spiritual support they receive.”
The clergy, too, often play a huge role in hospice care. Rabbi Bryan Kinzbrunner, chaplain for the Oscar and Ella Wilf Campus for Senior Living in Somerset, said clergy members provide solace and comfort, not only through religious counseling, but by appealing to cultural ideas as well. “I made a home visit to a Jewish man who described himself as an atheist,” he said. “We were joined by a Chabad rabbi, who asked the man if he wanted to get some exercise by dancing. The man agreed and we all started to dance. The patient, who was initially pretty grumpy, broke out into a huge grin and couldn’t stop laughing.
“All we want do is help the patient feel good, for at least a little while. And if that means dancing in his living room, we will do it.”