As older adult population rises, end-of-life discussions gain traction

By Kevin Simpson, The Denver Post, 03/07/2016

Four years ago, when her husband collapsed and died after his daily swimming regimen, Jean Oksner slowly emerged from her shock and grief to realize that circumstances had spared her something she long had feared — that she would be ill-equipped to manage his medical care during a life-threatening illness.

Mickey, healthy until his unexpected death at 79, stubbornly had refused to talk about end-of-life issues. But Jean resolved to make her own desires known, as a gift to her three adult sons.

“I told them I’ve made these decisions: This is the quality of life that is the minimum for me, that’s what I’ve set down here,” she says. “Anything worse than that, forget it.”

Oksner, like many Americans, has broached end-of-life scenarios in conversations that are both philosophical and technical in their scope. A recently enacted Medicare rule also makes it easier to discuss advance care directives with physicians.

On Jan. 1, doctors could start billing the federal health insurance program for those conversations.

The new Medicare rule puts advance care discussion on the radar for some doctors and boosts its priority for others, says Dr. Hillary Lum, geriatrician at University of Colorado Hospital and assistant professor at the University of Colorado School of Medicine.

“In a best-case situation, excellent primary care physicians already are having this conversation,” Lum says. “But because it’s time-consuming, sometimes they run behind, and it’s hard to fit those conversations in.”

Medicare doesn’t limit the number of times an individual can have these advance care planning talks — something Lum says reflects the idea that they should take place multiple times as individuals age and their preferences change.

Surveys show that most people recognize the importance of communicating end-of-life wishes, yet relatively few have formalized the process.

The discussions have particular resonance for baby boomers, who have turned 65 at a rate of about 10,000 per day since 2011. Colorado has one of the fastest-growing older adult populations in the nation.

Eileen Doherty, executive director of the Colorado Gerontological Society, says that when her organization gives presentations on Medicare, news of the new rule elicits lots of approving nods from the audience.

“We present it as, even if you want all treatment, it’s as important as if you want to have no treatment,” she says. “We present it in broad context, so we’re not promoting one kind of philosophy over another.”

Although early drafts of the Affordable Care Act included provisions to cover end-of-life conversations, political backlash invoking government “death panel” rhetoric prompted them to be pulled.

More recently, the Medicare rule has raised concerns from critics who fear such discussions might steer patients toward rejecting life-saving treatment in the name of lowering health care costs.

“And the way you’re doing it is by not giving balanced and accurate information that allows people to bring their own values and preferences to bear,” says Burke Balch, director of the National Right to Life Committee’s Robert Powell Center for Medical Ethics. “What you’re doing is giving them information that has one finger on the scale.”

Burke adds that his group supports the idea of advance directives but also backs proposed legislation that includes requiring Medicare to provide a wider range of advance directive choices, including pro-treatment options such as the NRLC’s Will to Live.

Kaiser Permanente, one of Colorado’s largest health care providers, adopted a systematic approach to advance care planning several years ago that seeks to identify patients’ goals, to link them to resources such as classes and online videos and to better train the staff to facilitate one-on-one conversations, says Dr. Dan Johnson, Kaiser’s director of supportive care solutions in Colorado.

He adds that studies show following people’s wishes tends not to drive up costs.

“It tends to ensure the care given is aligned with what people want,” Johnson says. “Many times, what people want is not the most expensive option.”

He wonders how, as advance care planning continues to take hold, doctors will adapt their practice — adding that the biggest unknown could be how much physicians fear having such an intimate conversation with patients.

“I think society is making progress on that,” he says. “What will be interesting is: Are doctors making progress on that? Are we able to make a safe space where these conversations can become the norm as people are doing their planning so that they and their families have the support they need?”

Efforts to encourage more — and more effective — conversations between health care providers and patients have sprung up across the country. For instance, the nonprofit Institute for Healthcare Improvement has hosted webinars designed to help providers understand best practices and pitfalls of advance care discussions while also explaining how to document and bill for them.

Amid more intensive professional training efforts, groups like The Conversation Project have provided grassroots resources designed to make exploring the issues around end-of-life care more accessible for individuals.

“Our aim is to push this conversation upstream, so people who are healthy have these conversations before chronic or serious illness has descended on us,” says Constance Holden, co-founder of a Boulder County effort based on the national model. “We think every adult should be having these conversations.”

A best-selling book, Atul Gawande’s “Being Mortal: Medicine and What Matters in the End,”explores the nexus of end-of-life issues and the American health care system in depth. A wide variety of tools are available to help individuals sort through the issues.

In Colorado, documents like the MOST form — Medical Orders for Scope of Treatment — can spell out directives, while Five Wishes provides a popular template for a living will. So-called “death cafes” provide forums for conversation on the subject in Denver, Boulder and Colorado Springs, while Death Over Dinner also offers opportunities for discussions in a social environment.

In the absence of well-articulated or well-documented preferences, decisions on an individual’s end-of-life care can wreak havoc on families.

Trude Bershof, a hospital palliative care volunteer for six years, has seen deep-seated guilt, anger, fear — and any number of other emotions — rip apart families struggling to determine what course to pursue on behalf of an ill and incapacitated relative.

All that bedside drama moved her to file her own advance directives with her doctor. She designated one of her three adult children as her surrogate on health care decisions if she could not make them herself.

She re-examines her choices every couple of years, because individuals’ attitudes tend to change with age and circumstance.

“People’s idea of quality of life changes a lot when they’re facing mortality,” Bershof says.

She faced mortality during a battle with breast cancer. The experience led her to some basic decisions: not to be a burden to her kids; to remain independent as long as possible; and not to be intubated in an emergency.

“Now that I’m 75, going on 76, there are a lot of treatments I would not want,” Bershof says. “I know I’m not going to live forever. I don’t want extreme measures on any level.”

No matter what a person believes about how — and how much — modern medicine should play a role in addressing life-threatening illness, the conversation looms paramount, advocates say.

Dr. Lum, the CU geriatrician, recently used a Colorado Health Foundation grant to develop a new model for advance care planning among groups of patients at their usual primary care clinic.

Over two years, professionals and “peer partner” volunteers helped guide the groups through discussions about their own wishes for how end-of-life scenarios might play out.

“The stuff that came out in the sessions was largely about things going horribly wrong,” says Lois Knight, one of the peer partners who also volunteers in hospice care. “That may be the first thing you know. You may not know what you want, but you know what you don’t want.”

Many of the patients signed up to explore advance care because their experience with a spouse, or close friends or family members, forced them to confront the issue.

Knight’s interest had been piqued by her experience with medical professionals in the last years of her parents’ lives, when they were in and out of hospitals, subjected to what she later would learn were pointless but painful tests.

“I’ll never forget,” she says, “they gave my dad a spinal tap when he was in the hospital for pneumonia. And afterward, I asked the resident, ‘What were you testing for and how will this change his treatment?’ And the guy honestly said it won’t. And I thought, why did we do this to this poor old man?”

The talks walked participants through various directives and documents but also targeted basic themes: What matters most? What constitutes a meaningful life?

Here, conversations became both broadly philosophical and surprisingly specific. One person defined meaningful life like this: “If I can’t read ‘Harry Potter’ and understand it, then it’s time to go.”

Jean Oksner, who had the discussion with her kids after losing her husband and now calls herself a “proselytizer” on behalf of advance planning, acknowledges that her instructions are basic and don’t cover every scenario.

“I can’t think of everything, but they understand, especially my son Jerry, who’s here, is very compassionate and intelligent,” she says. “He’d know how and what I would want. He’d just know.”

Jerry Oksner, who often accompanies his mother to doctor visits, allows that nobody likes to talk about potentially difficult choices they may have to make for their parents.

But he appreciated his mom’s effort to make sure he and his brothers would not be conflicted or in doubt if and when that time came.

“I accepted it as a gift,” Jerry says. “She did it with the best of intentions, looking out for the rest of us, who are going to be struggling with whatever the final situation is.”

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