Published by Lilo H. Stainton on NJ Spotlight.

Despite widespread wishes to die at home, research shows Garden State residents are more likely than many Americans to spend parts of their final months in the hospital, receiving costly and questionably necessary treatments that do little to improve their quality of life.

To help shift this trend, New Jersey officials will spend $5 million this year to develop a comprehensive state model for end-of-life care, develop education and training protocols for healthcare providers, and study the impact of hospice placement on patients’ experience. There also are online tools now available that make it possible to compare hospice programs.

State Sen. Paul Sarlo (D-Bergen) joined former Sen. Kevin O’Toole (R-Bergen), who now serves as chairman for the Port Authority of New York and New Jersey, and leaders from Holy Name Medical Center at the Villa Marie Claire hospice in Saddle River to announce the special funding late last month. Villa Marie is the only Garden State hospice facility associated with an acute-care hospital (Holy Name, in Teaneck).

Last wishes

There has been growing focus in recent years on helping seniors and terminally ill patients ensure their wishes for end-of-life care are made clear to both family and healthcare providers, who are conditioned to doing what they can to save lives.

The New Jersey Health Care Quality Institute has worked with local communities to host a program called “Conversations of Your Life,” designed to prompt these tough discussions. In April, Villa Marie served as a backdrop for the rollout of the state’s new electronic Practitioner Orders for Life-Sustaining Treatment (or POLST) initiative, through which patients’ wishes are filed in a database that can be accessed by first responders, hospital staff, and other providers anywhere in the state.

And when three of the state’s most powerful healthcare players — the Medical Society of New Jersey, New Jersey Hospital Association, and New Jersey Association of Health Plans — joined with Seton Hall University to create a leadership academy in December, the first issue on the agenda was improving end-of-life care.

The new project to develop a hospice model also involves the Medical Society and seeks to create a system for state providers that better honors patient wishes and doesn’t squander critical resources.

“We believe that creating a standard for the appropriate use of end-of-life-care resources, introduced at the appropriate time, will result in a reduction in state and federal costs stemming from unnecessary hospital admissions, ER visits, procedures, tests, and treatment,” Sarlo said. “Of course, the most important goal we’re working towards is better quality of life for New Jersey residents and their families.”

Added to the budget

The money for the hospice model was not included in Gov. Chris Christie’s original budget proposal for fiscal year 2018, which began in July, but was added by Sarlo, the Senate budget chairman, and other Democratic leaders who drafted the legislation during the spring. The award then survived the series of strained negotiations that shut down the government for several days in early July before state officials came to agreement on a $34.7 billion spending plan.

The New Jersey Home Care and Hospice Association serves nearly 40,000 terminally ill Garden State residents annually in a variety of settings, including private homes, group residences, nursing homes, and dozens of dedicated hospice facilities. But studies show these individuals often get to hospice too late, after enduring expensive and unnecessary hospital treatments that may extend their life, but do little to enable them to enjoy that extra time.

According to the Dartmouth Atlas Project’s latest report, “Our Parents, Ourselves: Health Care for an Aging Population,” released earlier this year, Medicare patients in the New York City and New Jersey area spend more time receiving healthcare than seniors elsewhere in the nation; an average of 18 to 25 days of treatment per year.

Highest rate of intensive care

The region also had the highest rates of intensive-care use among Medicare patients, with seniors in most of the state spending an average of 4.3 to 9 days in an ICU within their final six months. In addition, a high number of patients with dementia were fed through a tube near the end — meaning efforts to help them eat normally had failed — and as many as 18 percent of Medicare patients were taking risky medications in their final months.

The Dartmouth Atlas also revealed a high number of Medicare patients who died were transferred to hospice in the last three days of their life, too late for them to gain the true benefits of a palliative-care system that is focused on keeping them comfortable. In the southern half of New Jersey, at least one in five seniors were enrolled in hospice near the end, and between 13.3 and 17.4 percent were referred late in the northern portion of the state.

“One of the most important healthcare reforms our state must address is improving care for New Jersey patients in the final chapters of their lives,” said Michael Maron, president and CEO of Holy Name, noting that he was proud to lead this project at Villa Marie.

“We know that while life-extending care and other medical treatments may lengthen life, it may be at the expense of quality of life,” Maron added. “Our goal is to help patients and families understand the difference and maximize the moments they share in their final months, weeks, days, or hours together.”

The project has eight key initiatives, Sarlo and O’Toole said, including developing a model for end-of-life care that includes goals and actions that stretch from two years before a person’s death to a year after their passing. It also involves developing education, training, and a state certification process for doctors, nurses, social workers, and other healthcare professionals.

In addition, the project calls for comparing the patient outcomes and experience for those enrolled in hospice with the results of those who die in hospitals or at home. The work could lead to a series of additional policy recommendations, they said.

“The conversation about end-of-life care is an important one that all families need to be having and that our policymakers need to address,” O’Toole said.  “This funding supports the full spectrum of end-of-life care, encompassing the patient, family, caregiver, provider, and community.”