People need to talk to their families and loved ones about their end-of-life wishes long before they approach death — something that is not happening enough, according to experts. They also said these goals need to be more effectively documented and shared with healthcare providers.
But there are also things New Jersey must do better, as a state, to support patients, families, and clinicians in this difficult process, indicated the healthcare leaders and end-of-life care providers who joined NJ Spotlight’s roundtable discussion on the topic last Thursday. (The author served as moderator.)
“I really do believe that New Jersey has one of the best hospital and healthcare systems in the country,” said Dr. Shereef Elnahal, the state health commissioner, who joined the panel. “But we are failing at this, as a state.”
The panelists said these unmet needs include expanding access to hospice and palliative care; improving training for doctors in how to handle these difficult conversations; providing more assistance to families as they plan; and giving patients more control over their destiny, as a controversial “aid in dying” bill approved by lawmakers Monday seeks to do.
Dying with dignity
The measure — A-1504 — would let terminally ill individuals with less than six months to live have access to medications that would enable them to end their lives. It was approved by the state Assembly and Senate, with few votes to spare. Opponents, including advocates for individuals with disabilities, fear it sends the wrong message to young people and could prove a slippery slope that leads to other policies that might be seen as pro-suicide.
But Gov. Phil Murphy said the measure is all about dignity and announced his intention to sign the measure into law, shortly after Monday’s vote; this would make New Jersey the ninth jurisdiction nationwide to permit the practice. “Allowing terminally ill and dying residents the dignity to make end-of-life decisions according to their own consciences is the right thing to do,” Murphy said.
“It’s an important option. It presents tremendous peace of mind for people,” agreed roundtable panelist Corrine Carey, a senior campaign director with Compassion and Choices, which has pushed for these laws nationwide. Based on the experience in Oregon, which legalized the option in 1994, and other states, she said, “It’s important to note that more people don’t die in states that have medical aid-in-dying laws. Fewer people suffer.”
Elnahal did not endorse or oppose the legislation, but noted that fears about higher death rates or discriminatory use — which he termed “very, very concerning” — have not been supported by the data from other states. In fact, nearly one-third of those who obtain lethal medication through these programs decide not to take it. But states with such laws do have higher rates of end-of-life planning, he noted.
These laws do “affect the conversations we have as clinicians. That is a positive externality, regardless of where you fall” on the legislation, Elnahal said.
Improving end-of-life planning
The majority of NJ Spotlight’s nearly 90-minute roundtable, convened at Rutgers University’s New Brunswick campus, focused on the need for better end-of-life planning and ways the state can support that process. Just over one-quarter of state residents have formally recorded their wishes.
“This is a normal part of being human. Why aren’t we talking about this,” asked Cathy Bennett, president and CEO of the New Jersey Hospital Association. The organization has partnered with physicians, insurance companies, and other stakeholders as part of the Goals of Care Coalition, which is also seeking to address these issues. “Despite tremendous advances in medical care over the past centuries,” Bennett added, “We still have a 100 percent mortality rate.”
Studies show that less than one-third of New Jerseyans die at home, despite their wishes, and 25 percent pass away at the hospital — the third-highest percentage nationwide. Those who end up in the hospital are often there for days and subjected to expensive and invasive procedures they don’t want. And these treatments tend to cost more than in other states.
Panelists discussed recommendations included in a report released in November by a state advisory council, which overlapped with suggestions contained in an end-of-life-care blueprint published in June by the New Jersey Health Care Quality Institute. Both documents underscore the importance of family conversations about final wishes, which can be witnessed by a doctor and recorded in the state’s electronic database, which is accessible from multiple hospitals and healthcare systems.
The key, they agreed, is talking about death and end-of-life care before an individual winds up in the hospital. “It’s really focused on taking these conversations outside of the hospitals, outside of the provider office, where they really need to be happening much earlier in the community setting, where residents feel more comfortable having these conversations,” said Adelisa Perez, with the quality institute, which hosts community events through its Conversation of Your Life program. (Events are scheduled throughout April.)
While family members may not want to broach the subject, panelists said it is important for them to have these conversations, and to listen carefully. “Many older adults are not afraid of dying,” explained Christopher Kellogg, a social worker who founded Nightingale NJ elder-care navigation.
“What they are afraid of is being in pain and anguish. What they are afraid of is not living in a place they want to live in, and receiving the care — the pain management — that they want and need. And finally, their perception of being a burden on their loved ones” is a critical factor, Kellogg noted.
Doctors and death
Healthcare providers also tend to be uncomfortable, and even ill-equipped, for these conversations, the group agreed, making it difficult for them to determine what is truly best for a patient. Elnahal recalled how his medical training included a single, one-hour class on “difficult conversations,” and no specific training on how to talk about death.
Hospitals have developed toolkits to help providers, Bennett said, but there is also a need to better train future physicians, including more fellowships for palliative care. “This is one of the key areas,” she noted. As much as has been done to change the culture around death, “we (also) need to support and educate and train a whole host of clinicians,” she added.
The panelists also agreed there is a need to expand options to intensive, end-of-life care, including palliative and hospice care. Both focus on providing comfort, but palliative care can be provided along with treatment, while hospice is reserved for terminally ill patients who are no longer looking to extend their lives.
Hospice can be found in hospitals, long-term-care facilities, and patients’ homes. Mike Maron, president and CEO of Holy Name Medical Center, also talked about the organization’s Villa Marie Claire hospice in his keynote speech Thursday.
Unfortunately, the speakers said there is little financial incentive to expand hospice, palliative care, or end-of-life planning programs, given the limited reimbursement from insurance providers. Medicare covers some of these services, but not all. New Jersey recently expanded the scope of its Medicaid program to include more of these options.
“It can be hard to keep the lights on” at hospice facilities, Bennett noted, given the current system.