New Jerseyans nearing death undergo more aggressive medical treatment than patients in any other state, care that costs an average of 20 percent more than it would elsewhere and often doesn’t align with the individual’s personal wishes.
A group of powerful healthcare stakeholders is highlighting those statistics, derived from the Dartmouth Atlas of Healthcare, a nonprofit that studies healthcare resources, as part of their continuing campaign to encourage more Garden State residents to think about — and document — their desires when it comes to end-of-life care.
They have joined forces as the Goals of Care Coalition of New Jersey — a nonprofit that includes hospital and long-term care leaders, physician advocates, the insurance industry, patient-outcome organizations, experts on aging, and public agencies. The coalition held its first meeting recently, in conjunction with National Healthcare Decisions Day, April 16, an event that is in fact being marked throughout this week.
The group wants to encourage patients to fully consider their final healthcare wishes, discuss these openly with family and friends, and commit their aims to writing in a way that will be clear to medical providers who are generally trained to do everything they can to save lives, regardless of the cost. Nationwide, 55 percent of patients who wanted to die at home actually passed away in a healthcare facility, according to the Dartmouth Atlas; and, caring for chronic illness among those in their last two years of life absorbed nearly one-third of all Medicare dollars.
New Jersey has made strides to help patients plan and codify their choices for late-life medical care — particularly through expanded use of a standard form, the Practitioner Orders for Life-Sustaining Treatment, or POLST initiative, which dates to 2013 here. But the tool has been slower to catch on than stakeholders would like. Last year the state Department of Health initiated a pilot program with the New Jersey Hospital Association to create an electronic registry for these orders, a project that has faced some technical and operational challenges, but should be ready to go live soon, officials said. The state also maintains an “advance directive” website with extensive information for patients and providers about POLST orders and end-of-life planning in general.
“Far too often, patient preferences for end-of-life are never documented and are only discussed during a health crisis,” said state Department of Health commissioner Dr. Shereef Elnahal; “Advance care planning is the best way to make their end-of-life preferences known to ensure an individual’s wishes can be fulfilled,” he said.
The Garden State’s POLST program is one of 24 considered still “developing” by the
National POLST Paradigm, an advocate for the process. Twenty-two states, including Pennsylvania and New York, have systems that have been endorsed by the group and two, California and Virginia, are considered “mature.” While updated numbers are hard to come by, a 2001 study by Rutgers University Center for State Health Policy found only 16 percent of New Jersey residents had completed any kind of advance healthcare planning, nearly half the national rate at that time.
While there is growing awareness among healthcare providers, patients, and those paying the bills that more must be done to plan and control end-of-life care, translating this understanding into action has proved challenging. Patients and family members may struggle to overcome cultural or personal barriers to discussing death or the clinical details of life-saving medical interventions, and healthcare providers often lack the training or the time to lead these delicate conversations. In addition, it is very hard for providers to get reimbursed for an end-of-life planning session.
Respecting people’s choices
“New Jersey has many organizations that are passionate about improving end-of-life care and making sure that people get the type of care that they want at the end of life and that their choices are respected,” said Linda Schwimmer, president and CEO of the New Jersey Health Care Quality Institute, a member of the Goals of Care Coalition.
The institute also leads the Conversations of Your Life program, now active in eight New Jersey counties and scheduled to expand to three more in June, and it is creating culturally appropriate end-of-life planning materials in Spanish, Korean, and Chinese. The Rutgers 2001 study suggests that there are significant racial and cultural disparities in approaches to advance directives, with white residents three times more likely to form a written plan than their black neighbors, and as much as eight times more likely than Hispanics, a gap partly explained by concern about immigration status, experts note.
“To achieve our mutual goals, we’ll need to work together to change the culture so that people become more comfortable and adept at discussing their wishes and then documenting,” Schwimmer said. That should include better training for doctors, nurses, social workers and others; a payment system that covers the time it takes to have these conversations; and a statewide electronic registry with POLST and other advance directives that can be accessible to all providers at any time, including in an emergency, she said.
Some healthcare facilities have found ways to incorporate end-of-life planning into their patient protocol. The DOH’s Elnahal praised the efforts made by staff at the Villa Marie Claire Hospice, an inpatient site in Saddle River run by Holy Name Medical Center, which he toured in March. AtlanticCare, a healthcare system based in Atlantic County, is marking Healthcare Decisions Day with a series of outreach efforts this week to help patients and family members understand and participate in advanced planning.
Using electronic tools
The state is also awaiting recommendations from the DOH’s New Jersey Advisory Council on End of Life Care, which is scheduled to soon release an assessment of current efforts and to offer recommendations on how to further expand the use of advance directives. “I look forward to reviewing their forthcoming recommendations,” Elnahal said.
Efforts to roll out the electronic POLST database also continue, although the system still involves paper forms today. The hospital association has worked with a group of its members to develop a pilot site that is “almost ready to go live, and four or five others are in the pipeline,” explained Joe Carr, the NJHA’s chief information officer, who has spearheaded the project. “Operationally, it’s pretty complex.”
Carr said that the technology was one hurdle, but developing a “clear and logical” workflow for the system also took time; the process requires healthcare providers to discuss with patients and family members the diagnosis and details of care, commit this information to writing, and then ensure it is properly logged electronically — and updated, if the individual’s wishes happen to evolve.
The Goals of Care Coalition should be beneficial in the hospital association’s efforts to get the database up and running, Carr said, in part by ensuring all stakeholders are on the same page when it comes to helping patients understand the importance of advance planning. “In the end, the technology is a valuable tool for portability and security, but the most important thing is a good process to engage and empower the patient,” he added.