A new report on what New Jersey should be considering regarding end-of-life care has “no shortage of recommendations,” writes NJ Spotlight. “26 of them, in fact.” The report from the New Jersey Governor’s Advisory Council on End-of-Life Care, an independent organization under the state Department of Health, depicts a healthcare system that’s focused on saving lives, but often at the expense of hospice and palliative care treatments that can improve quality of life.
This imbalance can be seen in the fact that though most patients wish to die at home, just 30% do. Too few individuals discuss their wishes and prepare them in writing, the report finds. This leads to healthcare treatment that’s “misaligned with a patient’s preference and wishes.”
This lack of hospice and palliative care services is felt by patients and families across the state. NJTW News tells the story of the Gladden family, who received the news that all three of their teenage daughters were diagnosed with lupus. The parents spread their story of living within the healthcare system at forums like those held at Samaritan Healthcare & Hospice in Voorhees.
“They’ve been in the health care system for so long, that a comfortable day, was really, really, really important,” says Darryl Gladden. He and his wife Andrea had to talk to their children about their dying wishes.
“Danielle had no palliative care, no hospice care,” Andrea Gladden told those in attendance. “Life was difficult for us because we were her only help.” In fact, “A new report released by the Governor’s Advisory Council recommends increasing awareness and education around palliative, hospice care and end-of-life care directives.”
State health commissioner Dr. Shereef Elnahal says, “New Jersey patients experience more aggressive care at the end-of-life without evidence to suggest a corresponding medical benefit.” Looking forward to the services that will be required of an aging population, the report has a dire warning: “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 47-page report urges big changes to get the state on track. The first recommendation is the creation of a statewide stakeholder coalition to oversee improvements in end-of-life care. However, NJ Spotlight notes that the DOH “respectfully disagrees” with one of the group’s suggestions. The suggestion is, “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 life.”
Many of the report’s recommendations focus on improving education. For providers, new partnerships, fellowships, and standardized best-practice models would support a more robust and coherent response. For the public, culturally appropriate public awareness campaigns are recommended. The report underscores the importance of Practitioner Orders for Life-Sustaining-Treatment (POLST) and creating systems to document final wishes. Allowing intensive-care paramedics to treat chronically ill patients at home may also abide by patient wishes and avoid an unnecessary or unwanted trip to the hospital.
“A package of bills on palliative and advance care planning has languished in the Legislature,” writes NJTV News, but this new report urges bold action to provide patients with options and encourage them to document their wishes sooner.
“‘You want to have all the curative option exercise,’ says Cathleen Bennett, president & CEO of the New Jersey Hospital Association. ‘We’re not saying not to take the curative steps. We’re actually saying the opposite, we’re saying do all you can from a curative perspective. But when those options have been expired, make sure that you have the conversation about palliative, make sure you have the conversation about hospice care.’” The report refers repeatedly to hospice care. (NJ Spotlight, 11/26, www.njspotlight.com/stories/18/11/25/how-end-of-life-care-in-new-jersey-could-be-greatly-improved; NJ Governor’s Advisory Council on EOL, www.state.nj.us/health/advancedirective/documents/NJAdvisoryCouncil_EOL_FinalReport.pdf; NJTV News, 11/27, www.njtvonline.org/news/video/health-care-professionals-encourage-planning-for-end-of-life-care)