Expanding Awareness of Palliative Care for Gravely Ill Is Goal of Bill

Supporters see measure as step in broader effort to expand new field of medicine

palliative care
Dr. Arnold Baskies recently asked legislators to imagine a hypothetical treatment. It’s sought by 92 percent of cancer patients; saves emergency room visits; improves both the length of time that people live and the quality of their lives; and saves government, patients, and healthcare providers money.

“What is this magic treatment that we have? It’s called palliative care,” said Baskies, a Willingboro-based specialist in cancer surgery.

Relatively new as an officially recognized field of medicine, palliative care is still growing in acceptance among both providers and patients. Now, legislators are aiming to increase awareness of palliative care and the related field of hospice through a bill requiring hospitals, nursing homes, and other medical facilities to inform patients with serious illnesses about appropriate palliative and hospice services.

Palliative care seeks to treat the symptoms of serious illness, such as pain and stress, but doesn’t seek to cure its underlying symptoms. It uses a team-based approach, in which a doctor treating a patient works with other providers such as social workers and chaplains to meet the sick person’s social and spiritual needs. The care can begin at any point after a patient has received a diagnosis and can be given at the same time as treatments that are directed at effecting a cure.

Supporters of the bill, A-3911/S-2931, see it as a key step in advancing recognition, acceptance, and demand for the treatment. But it won’t resolve all of the challenges that face palliative-care providers, including the fact that it can be difficult for patients to receive referrals from doctors and for insurers to approve adequate reimbursements for the still-new field.

Bill sponsor Assemblywoman Nancy J. Pinkin (D-Middlesex) said that while palliative care has received growing attention in recent years, many patients remain unaware of what services are available to them when they could benefit from them, or see it as only available to those who are at the end of life and have foregone all other treatments.

“The whole point is to focus on it sooner,” Pinkin said, noting that the United States will soon have 18 million cancer survivors, many of whom could benefit from palliative care.

The bill would be implemented by a new state Palliative Care and Hospice Care Advisory Council, working with the Rutgers Cancer Institute of New Jersey to develop the information to be given by hospitals to patients.

The bill is “not saying, ‘You’re not going to get care,’ or ‘You’re going to get care.’ It’s about the pros and cons and saying, ‘What do you want to do?’” Pinkin said.

Pinkin credited the American Cancer Society with inspiring the bill. Ethan Hasbrouck, a lobbyist for the society’s Cancer Action Network, said major advantages of palliative care include its focus on the patient’s priorities, as well as working to improve the quality of life of both patients and their families.

“It treats the person really beyond the actual disease,” he said, noting that a cancer diagnosis can be one of the biggest blows to a person’s health, leading to depression and anxiety. A team of palliative-care providers, by focusing on a patient’s priorities, can recognize when the patient could benefit from a psychiatrist or a nutritionist, in a way that other healthcare providers focused on curing diseases may not.

There’s growing evidence to back up these claims. For example, a 2010 New England Journal of Medicine article found that lung-cancer patients who received palliative care both got less aggressive medical care and lived longer than those who didn’t. And a 2011 study in the journal Health Affairs found that palliative care consultations cut hospital costs by $6,900 per admission, with recipients both spending less time in intensive care units and being less likely to die in ICUs.

[related]Some of the challenges that palliative care faces are rooted in the history of hospice care, which palliative care grew out of. Medicare generally doesn’t pay for hospice unless a patient has been given a prognosis of less than six months to live, and patients must forgo treatments that seek to cure their illnesses.

While palliative care grew out of hospice care, it’s expanded beyond the limits imposed on hospice. Specialists don’t limit themselves to terminal illnesses, instead linking their care to what they describe as “serious illness” (in practice, this still means potentially life-threatening conditions like cancer, AIDS, and congestive heart failure).

And perhaps because it’s still a new field, insurance codes either haven’t been created for many of the services provided through palliative care, or offer reimbursements that are too low to allow hospitals to sustain palliative care teams without additional support from philanthropies.

Dr. Karen Knops, medical director of the palliative care program at Morristown Medical Center, noted that many non-palliative-care doctors have traditionally been hesitant to discuss palliative care with patients.

“Because there can be emotions involved in talking about making plans for the future or what it can mean if someone got sicker, it can be hard to bring up and doctors often aren’t sure as to how patients may react,” Knops said, adding that patients benefit from hearing that palliative care is about improving the quality of their life, not just about the end of life.

“There’s an increased recognition of the importance of having good compassionate conversations throughout the course of illness,” Knops said.

She added that more doctors are becoming aware of research indicating that these conversations can make patients actually feel less anxious about their future.

These discussions are a good opportunity for a doctor to let the patient know that they “care about them regardless of how their disease is responding to treatment.”

Executives with Samaritan Healthcare & Hospice, a leading palliative-care provider in South Jersey, support the bill. President and CEO Mary Ann Boccolini said too many patients are suffering without knowing that these services can ease their symptoms.

She said of the bill: “I think this is just another vehicle … to say palliative care needs to be integrated (into other medical care) because it’s what’s going to provide the best quality of care for the patient in the smartest way.”

Boccolini noted that New Jersey has been a national leader in healthcare spending in the last years and months of life, without it leading to healthier patients.

“It’s not so much that we’re spending the money — is it being well spent and are people actually suffering many times from the amount of treatments that are being given?” she asked. “They’re perhaps not being offered the conversation of what palliative care does.”

Samaritan Vice President James D’Onofrio said palliative care is going through the same process of acceptance by other providers and payers that other new medical fields have undergone.

“Palliative is too new to actually have a specific code set,” he said, referring to the insurance codes that are used to bill for medical services.

He sees the proposed bill as a step toward improving the awareness of what palliative care services are available, with improvements to remove obstacles, such as difficulty getting referrals from other providers and receiving payments from insurers, yet to come.

The Assembly Health & Senior Services Committee released the bill on a bipartisan 12-0 vote earlier this month. The Senate version has been referred to the Senate Health, Senior Citizens and Human Services Committee.

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