The Best Time to Consider Hospice Care: Before It’s Needed

Lilo H. Stainton | November 23, 2016 | Health Care
NJ residents, like many Americans, want to die at home, but they often fail to plan for this eventuality

At 96, Chuck Bell receives daily visits from a team of hospice caregivers in the house he's lived in for the past 70 years.
Chuck Bell may be a year into his second battle with colon cancer, but the 96-year-old insists he still has it pretty good — thanks largely to hospice.

A team of caregivers visits him every day in the Saddle Brook home he has owned for nearly 70 years, helping him cope with the impact of cancer, diabetes, and depression, and when the time comes he hopes it will be when he is asleep in his own bed.

“Sometimes I feel bad, but at least I’m in my own home,” Bell said, recalling the conversations he has with the few friends of his age who remain, many who reside in nursing homes or other long-term care facilities. “And I live like a king,” he adds, praising — and fondly teasing — the women who care for him regularly.

While most Americans hope to die in peace at home, the majority fail to chart — or document — clear plans when it comes to end-of-life care. Advocates for hospice, a healthcare model that seeks to provide compassionate care for individuals facing terminal illness, said this approach can play an important role in these treatments, helping patients, and their families, to experience a pain-free and dignified death in a more comfortable setting.

But people need to talk about it. National Healthcare Decisions Day, marked to encourage these difficult discussions, is celebrated in April, but November is National Hospice and Palliative Care Month, and those in the business encourage families to use the Thanksgiving holiday in particular as an opportunity to share their wishes regarding end-of-life care. By making it a regular part of an annual gathering, it becomes a less stressful process, they said. (Advanced-care directives and Practitioner Orders for Life Sustaining Treatment protocols can help this process.)

“There’s a general denial of death and dying,” explained Donald Pendley, the hospice and palliative care director with the Home Care & Hospice Association of New Jersey, an advocacy organization for the state’s 59 licensed hospice providers. Pendley said people spend significant time and money planning their wills and estates, but don’t always put the same effort into end-of-life healthcare. “We care more about our money than our lives,” he said.

Nationwide, nearly 1.7 million people participated in hospice care at some point last year; this includes roughly 40,000 in New Jersey, Pendley said. Eight in 10 patients are covered by Medicare, which pays the hospice provider a per-diem rate — based on regional costs — that is used to cover all expenses. This includes a team of caregivers that usually contains nurses, home health aides, social workers, volunteer coordinators, chaplain or other religious leader, and others, and may be supplemented by outside specialists. The funding also covers the patient’s pharmaceuticals and medical equipment, like a walker or mechanized lounge chair that can help someone to their feet.

“Hospice is just a fantastic way to deliver care in the home when the patient’s condition isn’t necessarily going to improve,” explained Chrissy Buteas, executive director of the hospice association. “There’s lots of confusion over what this role is,” she added, “but it’s about making the patient comfortable and able to live the fullest life they possibly can.”

Patients are eligible for this benefit if they are diagnosed with six or fewer months left to live, but most don’t make it that long. A report from the National Hospice and Palliative Care Organization found that in 2014, more than one-third of hospice patients died within the first seven days. Efforts to quantify the benefits continue, but research — including an ongoing survey by the Centers for Medicare and Medicaid Services — suggests families find hospice care more satisfying than losing a loved one in a hospital or other treatment facility, advocates said.

Then there are the patients like Bell, a former bus driver for NJ Transit, who first experienced hospice care in 2008 — soon after he was diagnosed with cancer for the first time. But the disease went into remission for nearly a decade, only to come back in 2015. Bell was again given six months and reenrolled in hospice, this time in a program run by Valley Hospice, part of the Valley Health System, in Ridgewood. Although he also suffers from hypertension and severe pain, 12 months later he was able to celebrate another birthday.

“I never thought I’d live to see 96,” the Air Force veteran explained, praising the help he also gets from longtime neighbors and the support he sees from a trio of nurses who try to visit when they can. His wife died 19 years ago after suffering from dementia.

“Sometimes, because of the support they receive, they live longer,” explained Alyce Brophy, chair of the hospice association and head of the Community Visiting Nurse Association, which provides hospice care in Central New Jersey. Brophy stressed that hospice care is not just helpful to the individual — it can also provide enormous benefit to family members. In fact, hospice teams continue to support family members for 13 months after the death of their loved one, she said, even though there is not a direct funding stream for this aspect of care.

Hospice care began in the United Kingdom and the first American facility, in Branford, CT, opened in 1974. Supporters worked long to secure federal funding for these programs; Medicare began paying for some hospice care in 1982, and the benefit was guaranteed in a 1993 health reform law. By 2004, more than a million Americans were served annually by hospice care, according to the national advocacy organization.

“It’s about helping people make informed decisions,” added Tina Basenese, Valley Hospice director. “And that’s why it’s so important for them to know about these services.”