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Making It Easier to Talk About a Difficult Subject – End-Of-Life Choices

Updated website helps NJ residents set up instructions for what medical measures should – and should not – be taken

State Health Commissioner Mary O'Dowd
State Health Commissioner Mary O'Dowd.

While many New Jersey residents have put off planning for the type of healthcare they want as they near the end of their lives, several tools newly available on a state website can help make this planning easier.

A recent Monmouth University-New Jersey Health Care Quality Institute poll found that only 45 percent of New Jersey adults have put their wishes for end-of-life medical treatment in writing.

A higher number – 62 percent – have at least talked with family members about the topic. But that means 38 percent still haven’t.

The poll was released shortly after the state revised its site dealing with palliative and end-of-life care.

The changes include a new page, “Discuss, Prepare, Choose,”a new page which includes a step-by-step “starter kit” on how to have a conversation with family members and healthcare providers about end-of-life planning. The downloadable kit was prepared by The Conversation Project, a national nonprofit dedicated to helping people discuss their wishes for end-of-life care.

For example, the kit asks participants to grade on a scale of 1 to 5 whether they are more worried about not receiving enough care or receiving overly aggressive care. The answers then can be used in conversations.

“This is one of the areas where I’ve made a priority, to try to raise awareness,” said state Health Commissioner Mary E. O’Dowd.

The additions to the site supplemented existing sections on advance directives and practitioner orders for life-sustaining treatment (POLST) forms. The forms serve as a binding order from a doctor or advanced practice nurse regarding healthcare decisions at the end of life, based on the patient’s values and priorities.

O’Dowd acknowledged that the form is primarily intended for people who are facing potentially fatal illnesses. But the new resources added to the website can be used by any adult.

“People need tools” to foster planning, O’Dowd said. “The poll is a reflection that we need as a society to do a better job of that.”

The new webpage also includes information for primary-care providers, including a link to the American Board of Internal Medicine Foundation’s Choosing Wisely project, which lists five types of treatments in each healthcare specialty that doctors and patients should question, as well as a link to an ongoing study] sponsored by the Dana-Farber Cancer Institute that provides a checklist to be used by providers to discuss serious illnesses with patients.

“As I’ve been out there talking about this some physicians really feel uncomfortable having that conversation with their patients,” while others have made it a routine part of patient visits, O’Dowd said.

O’Dowd noted that parents can include end-of-life planning as part of their instructions for who assumes custody for their children if they die.

“This is a conversation that you need to have routinely and regularly throughout your life,” O’Dowd said.

An important part of this planning is determining who will serve as a person’s healthcare proxy – the person who is legally responsible for making decisions for the person if he or she becomes incapacitated.

O’Dowd said she was glad that 62 percent of New Jersey residents have had these conversations, “but we want to make that (percentage) higher.”

In addition to the new page, there are separate pages on palliative care -- which is focused on anticipating, preventing and treating suffering, rather than focusing on curing illnesses – and on hospice care, the type of palliative care focused on terminally ill patients.

There’s also a separate resources page with new sections on planning for hospice and palliative care; to the American Bar Association’s resources for healthcare decision making, and to information on making medical decisions for a loved one at the end of life.

O’Dowd said people should take the time to learn more about these issues, including familiarizing themselves with palliative care.

“It’s one more way to be proactive,” before more difficult times, O’Dowd said.

In announcing the poll results, New Jersey Health Care Quality Institute President and CEO David L. Knowlton noted the gap between the conversations residents are willing to have and the actual steps they have taken.

“The challenge now is to translate that comfort into a meaningful conversation and a written plan that fulfills their wishes," Knowlton said.

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