Amid pandemic, it's time to face a chore we often avoid — planning end-of-life decisions

Jean Rimbach
NorthJersey.com

Families separated from dying loved ones.

Refrigerated trucks turned into makeshift morgues.

The death toll from the coronavirus climbing daily, surpassing 60,000 nationwide.

These constant reminders about the fragility of life underscore the importance of doing  something experts say many of us delay: putting end-of-life wishes down on paper.

An important end-of-life decision includes living out your days at home.

“Now that we’re in a health care crisis it elevates the urgency for doing this type of preparation and shines a light on why it’s so important,” said Linda Schwimmer, president and CEO of the New Jersey Health Care Quality Institute. “Maybe it makes it a little more stressful for people, but hopefully preparation and planning relieves stress.”

Schwimmer — whose group created the Conversations of Your Life Program — said all adults should express their wishes “so that, to the extent possible, you’re in control of how you’re cared for and that your priorities are followed.”

Mary Donovick, a geriatric and palliative care nurse practitioner with St. Clare’s Hospital in Denville and Dover, calls it “planning for life.”

“Death is a part of life and, unfortunately, it’s something that we are all going to face and none of us know when that will happen — and I think that’s the panic right now with COVID,” said Donovick.

“A lot of people are facing mortality — or the fear of it," she said. "We’re all going to die at one point — that’s certain, all of us — so having next steps planned out and those things set up for your family is one of the best things you can do.”

Health care professionals, legal experts and advocates say the COVID-19 pandemic presents a unique opportunity to consider one's preferences for medical intervention and open the discussion with loved ones — particularly as we continue to shelter-in-place.

Forms for advance care planning are available online and can be completed without an attorney. Some suggest uploading them to the cloud, sharing with family, and if you can’t speak in person consider a video chat.

“It’s a tremendous burden on the people we love to put them in a position of speaking and acting on our behalf with no information to do it,” said Kim Callinan, president & CEO of Compassion & Choices, an Oregon-based nonprofit.

In New Jersey, there are two kinds of advance directives. The living will or “instruction directive” spells out the medical treatments you do — or do not — want. The “proxy directive” — or durable power of attorney for health care — names the person you want to make decisions when you can’t.

Both require two witnesses or notarization. During the public health emergency, New Jersey is allowing remote notarization.

These are not the only forms that can be used. Five Wishes, for example, is a type of advanced directive recognized in New Jersey that addresses the medical side as well as the personal, emotional and spiritual. It contains a living will and the appointment of a proxy. Aging With Dignity has made the popular form available to download and print free on its website during the public health crisis.

And experts say those closer to the end of life, the frail or severely ill with a life-limiting diagnosis, should also fill out a form known as the POLST: Practitioner Orders for Life-Sustaining Treatment. It is completed with a physician, advance practice nurse or physician assistant and, unlike other documents, becomes a medical order.

These documents are especially important now, when health care resources are strained, hospital bans on visitors have isolated the sick, and those hit hardest by the coronavirus are placed on ventilators.

Concerns about a second wave of the virus are mounting even as the initial outbreak continues, with confirmed cases at 118,652 in New Jersey and 1 million nationwide.

Dr. David Barile, founder chief medical officer of the Goals of Care Coalition of New Jersey, said making decisions today can reserve “heroic measures” for those who want such medical intervention, instead of for those “who wish to avoid it.”

He said a POLST form is crucial for the most vulnerable — such as the frail elderly, or a 30-year-old with metastatic cancer — and urges patients and their decision makers to act.

“In this time of crisis we're asking people to just do it,” he said. “Do it, send it in to their doctor, have that conversation over the phone, because if you wait around for the doctor to call or the nursing home to call it’s probably not going to happen.”

He said one of the hopes is to protect people, especially frail elders, from burdensome care.

“Most Americans want a comfortable death at home,” said Barile. “They don’t want to die at the hospital, but more New Jerseyans do.”

Patients are treated with more aggressive medical care in New Jersey than those near the end of life in most other states. In United Health Foundation’s Senior Report 2019, New Jersey ranked 47th in hospital deaths for chronically ill seniors, at 25.3%.

New York ranked 50th at 29.8%.

The top 10 performing states in the nation are between 14 and 18%.

The pandemic has pushed some to act. Lawyers are hearing from clients, and doctors from families. Barile, a geriatric and palliative care physician, said children of some of his elderly patients have written to reinforce their parent’s wishes that they do not want to be resuscitated or put on a ventilator.

Shana Siegel, an elder law attorney with Norris McLaughlin, said that in recent weeks some clients have been “really trying to rush to get it done.”

“I have clients who have put it off for years, who started to engage me and then said well, we’ll get back to this, and all of sudden now its, 'Oh my goodness, we really need to do this now,'” said Seigel. “Unfortunately, I am not seeing as many new clients because people think I couldn’t possibly get this done at this point, which isn’t really true.”

One of them, a Glen Ridge resident who was widowed a dozen years ago, still had his wife named as his health care proxy. He said he has COPD — chronic obstructive pulmonary disease — and the coronavirus crisis “spurred me to action.”

“I have an underlying condition and it’s a threatening situation we’re in,” he said.

He updated his living will and named a priest he is close with as his proxy; the original paperwork was nearly two decades old. He expects to review it again soon — and talk with his new proxy further about the type of care he wants — but said he is relieved to have it done. 

“You know you’re not going to suffer unnecessarily,” he said. “If you don’t have somebody in place to make these decisions for you what’s going to happen when you’re in a compromised position?”

Feuding siblings

Experts say selecting the right health care proxy is key.

Callinan said most assume the best pick is the person closest to them — a partner, spouse or child. And it may be. But that person, she said, might also be the one having the most difficult time saying goodbye, making it harder to carry out final wishes.

“You want to pick someone who will understand your values and be willing to carry them out on your behalf,” said Callinan. “You want to pick somebody who is going to be a strong advocate and be comfortable speaking out to providers and others to make sure that your values become a part of the care that is being delivered.”

Siegel said in situations with “feuding siblings” the parent needs to make clear “which one of them has the authority because there will be fights.”

Callinan stressed that it’s important to have conversations about end-of-life care wishes with surrounding family in addition to the named proxy.

“Even though the health care proxy is the one who can speak on behalf of the person, hospitals tend to listen to the loudest voice and if there is conflict between family members about what to do they’re going to default ... to more care,” she said.

Schwimmer recommends consulting a primary care provider about end of life care, noting both Medicare and Medicaid reimburse for it.

“It’s a great opportunity to really get a better understanding of what the various types of care are,” she said. “This is something you should revisit throughout your life.”

Priorities change, she said, and your directive should change with your situation.

Most agree it’s best to start the conversation long before a crisis; Schwimmer said it’s important for anyone from 18 on up to think about. It's a conversation to have with adult children, your parents — and all of you together.

“In my family you turn 18 and we work together on your advance care plan,” said Callinan. “It’s an empowering experience because it helps to ensure that you are aware of your own mortality and that you’re living each and every moment to the fullest.”

Resources:

New Jersey forms and information (POLST, healthcare proxy, advance directive, frequently asked questions)

state.nj.us/health/advancedirective/ad/forums-faqs/  

New Jersey Brochure Advanced Directives

https://www.nj.gov/ooie/div-assets/docs/AdvanceDirectives2019.pdf

Conversation of Your Life Program (COYL)

www.njhcqi.org/COYL

COYL brochure in English also available in Spanish and Korean at website

https://www.njhcqi.org/wp-content/uploads/2018/11/COYL-Brochure-English-03.15.19-1.pdf

COYL: Advance Care Planning: Preparing for the Unexpected.

https://www.njhcqi.org/wp-content/uploads/2020/04/COYL_Advance-Care-Planning-Preparing-for-the-Unexpected_April-2020.pdf

Goals of Care Coalition of New Jersey

https://www.goalsofcare.org/

Compassion & Choices - Plan Your Care Resource Center

compassionandchoices.org/end-of-life-planning/ 

Advanced Planning Guide and Toolkit

compassionandchoices.org/resource/my-end-of-life-decisions-an-advance-planning-guide-and-toolkit/ 

Five Wishes – free document due to national emergency

https://fivewishes.org/five-wishes-covid-19

Death Over Dinner https://deathoverdinner.org/

Jean Rimbach is a senior investigative reporter for NorthJersey.com. To get unlimited access to her watchdog work that safeguards our communities and democracy, please subscribe or activate your digital account today.

Email: rimbach@northjersey.com Twitter: @jeanrimbach