Pandemic shows importance of advance care planning

Hospicare & Palliative Care Services’ Dr. Lucia Jander, medical director, and social worker Edna Brown took different journeys to their respective positions, but both share a common passion – to care for people who are dying.

“I feel like our society doesn’t have a great handle on how to best prepare for dying and to go through the dying process,” Brown said. “And Hospicare does, and I wanted to be part of that, making it a normal part of life and lessening the difficulty for both the patient and the family going through end of life.”

Ever since COVID-19 hit, Brown, Jander and the Hospicare team have worked to provide support for those that need it, including holding virtual events like Breath Breaks and talks around topics like spiritual health and dealing with grief.

One of Hospicare’s recent events, in partnership with the Tompkins County Public Library, was an Advance Care Planning Workshop, hosted by Jander, centering around planning for one’s death. It’s one of many such workshops that Hospicare holds, but Brown and Jander were surprised by the attendance this one received.

“I think we had 35 people signed up,” Brown said. “And I think that’s a pretty incredible number of people in our community who somehow learned about it through the library website and came on to do that.”

While the workshop was not prompted by the COVID-19 pandemic, Jander said that the high interest shows that advance care is still on a lot of people’s minds.

“I think the pandemic just kind of crystallized the urgency that people feel that they need to do something,” Jander said. “People sitting at home, looking at the news and kind of thinking about their own mortality has certainly brought up the audience.”

Advance care planning, as Brown and Jander explained, is all the planning that goes into preparing for one’s death. This includes things like choosing a healthcare proxy, filling out MOLST forms, making a living will and talking with family and friends about end-of-life wishes.

Brown said that the pandemic has shown just how important all this planning is, and it presents a unique opportunity to broach the subject with loved ones.

“We always talk about how it’s sometimes hard to bring up the conversation with your family or friends, your loved ones,” Brown said. “But because of this experience that so many people had, not being prepared for being put on ventilators and dying and not being prepared by having their healthcare proxy, that this is a way you can say, ‘Oh, honey, we don’t want to be like the people who got caught without plans during the pandemic. Let’s sit down and talk about this.’”

End-of-life planning can be a stressful experience for many, whether it’s the person receiving the care or their loved ones. And while it can be a time-consuming process logistically, it’s the emotional strain that can be the most difficult for some, Jander and Brown said.

“It’s about bringing it up to someone in a way that they can hear you,” Brown said. “And one of the suggestions from the Five Wishes website was to say something like, ‘I really want to honor your wishes when you can no longer speak for yourself, so now would be a good time for you to share with me what you would like for me to do as your healthcare proxy and making decisions for you when you can no longer speak.’”

Five Wishes (fivewishes.org), a program of Aging with Dignity, talks users through many different scenarios to help someone prepare advance directives. It’s one of the many resources Hospicare recommends for those trying to navigate this topic.

One of the most important advance care planning items, Jander and Brown agreed, is choosing a healthcare proxy, someone to make healthcare decisions on behalf of the patient when the patient is incapable of making those decisions for themselves. Deciding a healthcare proxy can be difficult for some, but Jander and Brown offered some words of advice.

“This is a time for you to make your choices known,” Brown said. “And if you don’t make your choices known by choosing a healthcare proxy, then the state hierarchy is going to choose for you. Maybe you don’t want your spouse to be your healthcare proxy. If you don’t, you need to designate someone else. … It really is about choice and making your choice known so that the right person is presenting your wishes to the health.”

And being a healthcare proxy is not a responsibility to be taken lightly, Jander said.

“They should ask themselves if they are up to the task because it could become a major time commitment, and most of the times, it’s not, but it could, and they should communicate really well with the person for whom they’re assuming that responsibility that they really know what the person would have wanted,” she said.

Brown added that the pandemic has helped to show the importance of a good healthcare proxy.

“In a time of COVID, maybe if you had tons of co-morbidities and it looked like ventilation was not going to solve this for you, they might offer comfort care for you,” she said. “Whereas … if someone has pneumonia and they need intubation, the odds are, that’s not going to kill them. So, intubation will help them get through the crisis of pneumonia, and then, they can go on with their life.”

No matter what end-of-life planning you’re doing, Jander and Brown said it’s important to have the conversations sooner, not later. And though the pandemic has complicated some of the things involved in advance care planning, Jander said that shouldn’t discourage anyone.

“It is more difficult to access medical care because the first three months was everybody’s worried about getting the virus, so they don’t come to the doctor,” she said. “Some of the routine care has slid because of the pandemic and the fear. But I feel that some people crystallize the need to get this done. So, I actually have had people who said, ‘I think this is important. I need to do it.’”