A long-awaited report on what New Jersey should be considering when it comes to end-of-life care had no shortage of recommendations — 26 of them, in fact.
They include the creation of a statewide stakeholder coalition to oversee improvements in end-of-life care; education and training programs for providers, and culturally appropriate public awareness campaigns for state residents; better systems to document final wishes; and allowing intensive-care paramedics to treat chronically ill patients at home in an effort to avoid a trip to the hospital.
The report, from the New Jersey Governor’s Advisory Council on End-of-Life Care, an independent organization that worked under the state Department of Health, was released last week. Some findings echo research by other policy groups that have also highlighted the need to focus more on how the medical system treats patients in their final days. Many agree the issue requires urgent attention.
Medical treatments are “often misaligned with a patient’s preference and wishes” for how they want to die, according to the state report, in part because too few individuals discuss their wishes with loved ones and codify these requests in writing. In addition, the healthcare system is focused on saving lives and invests too little in hospice care and palliative treatment for those at the end of their lives, it found.
The issue is particularly important in New Jersey, where only 30 percent of residents die at home, despite the fact that most wish to do so. And patients here are subjected to more medically intense end-of-life care than in any other state, consuming more healthcare resources, according to statistics cited in the report.
More ‘aggressive’ care in NJ
“New Jersey patients experience more aggressive care at the end-of-life without evidence to suggest a corresponding medical benefit,” said state health commissioner Dr. Shereef Elnahal. “We are thankful for the experts on this panel for developing these recommendations to improve the delivery of care in this state.”
Improving end-of-life care is a growing priority nationwide, as the number of elderly Americans is projected to double by 2060, with a huge leap anticipated in the next decade, as the baby boom cohort ages, the report notes. With more than 1.35 million seniors in New Jersey, the state ranks ninth nationwide for the size of its population over age 65 — a group that is expected to expand by two-thirds through 2030.
“There is no clear vision of how the healthcare system will be able to meet the obvious growing needs for chronic, palliative, and end-of-life care. This increasing demand, as well as the need for improvements in accessing palliative and end-of-life care, are key challenges,” the council warned.
The council, convened in 2016, was led by Elnahal and included several lawmakers, legislative staff, healthcare providers, and elderly and patient advocates. The council membership also included James McCracken, the state Ombudsman for the Institutionalized Elderly, and Elizabeth Connolly, the former acting commissioner for the state Department of Human Services. It was created in a 2011 law that prompted the state to adopt a unified system for codifying patients’ end-of-life wishes, but the council’s work did not get started for several years.
The 47-page report released last Wednesday, also underscores the importance of a unified statewide system for Practitioner Orders for Life-Sustaining-Treatment, or POLST forms, the primary goal of the 2011 law. Paper forms have been in use since 2013, but they are not universal, and efforts to build an integrated electronic system have progressed slowly due in part to technical challenges. (Earlier this year, the state expanded Medicaid coverage to reimburse providers for some of this planning.)
DOH disagrees with one recommendation
Improving the state’s POLST system is also a priority for the New Jersey Health Care Quality Institute, which released a blueprint on end-of-life care in June. The institute runs the “Conversations of Your Lifetime” program, a public awareness initiative through its Mayors Wellness Campaign, a model the state report also supported. The Goals of Care Coalition — a group of providers, insurance representatives, public officials and patient advocates — is also working to expand public awareness of these issues and POLST use.
The first recommendation of the governor’s council was to create a coalition or workgroup of stakeholders to further study the barriers to appropriate end-of-life care, make additional recommendations, and oversee the implementation of changes. The group would also be tasked with reviewing legislative and policy questions.
The DOH said it “respectfully disagrees” with one of the group’s suggestions — that lawmakers should provide guidance to medical professionals on how to respond to family members’ requests for treatments that may be useless or even harmful to a patient at the end of their life. Elnahal said the state supports the rights and autonomy of patients and their surrogates and would prefer a policy that involves more communication at an early stage before an individual becomes critically ill.
However, the state favored the call for a public awareness campaign in November — which marks National Hospice and Palliative Care Month — that is culturally appropriate for the state’s diverse residents, and other efforts to better engage citizens in the process, like online planning tools.
The report also recommended clear definitions of the terms involved. (For example: palliative care involves treating chronically ill patients to reduce pain and suffering, not the underlying cause of the illness, and hospice is a model of this kind of care for those at the end of life; hospice care can be used in hospitals, nursing homes and private residences.)
Education and training
Many of the recommendations focused on improving education, training and operations around end-of-life care for healthcare providers, including administrative staff at nursing homes, emergency-room personnel and ambulance squads. The group called for partnerships with medical professional organizations to create learning models, education fellowships to train more palliative caregivers, and standardizing best-practice models statewide.
The council also urged New Jersey to look to an example set by Washington State, which adopted legislation to allow drivers to indicate their long-term-care wishes on their drivers’ license. If the driver was in a potentially deadly vehicle accident, emergency responders could scan a code on the license to access the individual’s POLST form and treat them according to their wishes.
In addition, the report called for a change in the law governing mobile intensive care units to allow these trained teams to visit and treat patients with chronic conditions at home for non-life-threatening issues. This would allow for better monitoring of these individuals and could help keep them out of the emergency room.
“Patients nearing the end-of-life want to remain in their homes where personalized care and comfort measures can be provided,” the group wrote.