The recommendations were part of a strategic plan for end-of-life care released Monday by the nonprofit New Jersey Health Care Quality Institute and funded by The Nicholson Foundation, which seeks to expand access to care for vulnerable populations. The institute is hosting a breakfast meeting today to discuss these findings.

The 15-page report outlines ways in which state officials can work with hospitals, medical schools, local communities, and other groups to provide more appropriate — and often less expensive — medical treatments and support services to patients nearing the end. While the state has made some progress towards these goals, the plan suggests more must be done to get these initiatives up to speed.

Home, hospice, hospital

Studies have shown that while most Americans hope to die at home, perhaps with help from hospice care — which focuses on compassion, not cure — far too many end up spending their final days in a hospital, often enduring invasive, costly treatments. This is particularly true in New Jersey, which has the nation’s highest rates of intensive care for Medicare patients and spends more for these treatments than many other states.

“New Jersey performs poorly on end-of-life care compared with almost every other state in the nation. The statistics translate into real people treated with unnecessary and unwanted medical care at the end of their lives,” the institute noted. According to a 2018 United Health Foundation report, at least one in four Garden State seniors dies in hospitals — the third highest rate nationwide — versus 14 percent in states with the lowest number of hospital deaths.

The issue was already on the radar of state Department of Health Commissioner Dr. Shereef Elnahal, who toured the Villa Marie Claire Hospice in Saddle River earlier this year and hopes to replicate their protocols in other facilities. “Far too often, patient preferences for end of life are never documented and are only discussed during a health crisis,” he said, noting that the DOH maintains a website with patient forms and other resources. “Advance-care planning is the best way to make end-of-life preferences known to ensure an individual’s wishes can be fulfilled.”

That said, Gov. Phil Murphy, a Democrat who took office in January, did not choose to commit another $5 million to a hospice-care pilot that was included in the current budget to fund Villa Maria and other programs, a pet project of several powerful state legislators. When questioned by lawmakers, Elnahal said it was one of several tough budget decisions.

A lack of funding is only one hurdle to improving end-of-life care, the Quality Institute report suggests. A primary problem is that seniors themselves, their families, and their physicians are often reluctant to talk about options for end-of-life care, the data suggests.

Difficult conversations

In a 2016 poll with Rutgers University, the institute found six in 10 elderly residents thought it was important to talk about these issues, but the same percentage had not yet had these conversations. A recent national poll showed 99 percent of physicians agreed these discussions were needed, but less than one-third had received any training, and only 14 percent billed for such a consultation, the plan noted.

That dynamic may be starting to change. In 2015, the Quality Institute launched its “Conversation of Your Lifetime” program to help diverse communities spark these discussions, an initiative that is now active in eight counties and soon to expand to several more. Provider groups, like Samaritan Health & Hospice, in South Jersey, have also held workshops to prompt greater awareness about end-of-life planning.

In addition, the Goals of Care Coalition of New Jersey, a nonprofit organization made up of hospital and long-term care leaders, physician advocates, insurance representatives, healthcare quality organizations, aging experts, and public agencies, was created earlier this year to help improve end-of-life care. The coalition held its first meeting in mid-April, when groups nationwide mark National Healthcare Decisions Day.

Simplifying end-of-life planning

State government has also played a role in this process. In 2011 New Jersey passed a law expanding the use of a standardized form, the Practitioner Orders for Life-Sustaining Treatment, or POLST initiative, which allows individuals to record their wishes in a format that can be easily interpreted by healthcare professionals. The law also created a panel of experts, the New Jersey Advisory Council on End-of-Life Care, to guide this process.

But while the advisory council was supposed to issue a report in 18 months, that document is still pending years later, according to the institute; it is now scheduled to be released this summer. And patients and providers have been slow to embrace the use of POLST forms, which are still primarily paper format. A collaboration between the DOH and the New Jersey Hospital Association to create an electronic database with all the POLST information, launched last year, has also faced a rocky start, officials said.

According to the institute’s plan, the POLST database is now in its final testing phase at Hunterdon Medical Center and should be available to all 72 acute-care hospitals within two years; there will also be a mobile app for patients. The initiative, which is privately funded, is estimated to cost each hospital between $6,000 and $14,000 a year and will provide them immediate access to information about a patient’s final wishes.

Elnahal is also focused on improving the use of this database and seamlessly linking these files to other electronic health records, to ensure interoperability. “The Department supports interoperability because it is critical in improving healthcare overall. It is especially vital in end-of-life care because providers need to have access to documented wishes that outline life-prolonging interventions that should or should not be delivered,” a DOH spokesperson said Monday.

To further boost this effort, the Quality Institute recommends the state consider
taking over the POLST database itself, something only a handful of states, including New York, have done. Based on estimates from elsewhere, it would cost New Jersey between $500,000 and $600,000 annually to operate the system.

Insurance for palliative care

The plan also recommends the state expand insurance coverage for palliative care and end-of-life consultations; Medicare began to pay for these conversations in 2016. The institute urged New Jersey to follow California’s lead and allow Medicaid reimbursements for this type of care, something it estimated would cost the Garden State less than $900,000 a year.

In addition, the Quality Institute urges the state to create a comprehensive plan that addresses POLST use and reimbursements and also outlines a strategy for greater public and provider education. It should include the state’s five medical schools to ensure doctors, nurses, and other caregivers are trained in end-of-life conversations, and explore the use of financial incentives, or penalties, to ensure those in practice properly follow the patient’s orders for care.

“By implementing the recommendations set forth in this strategic plan, together we can help New Jersey become a leader among states in end-of-life care,” the institute notes. “A more effective system will not only help patients but also help their grieving families, who may find comfort from knowing the wishes of their loved ones were honored.”