Category Archives: Advance Care Planning

Magical Thinking in End-of-Life Issues

Recently I had a chance to see how the human heart and spirit can overrule the rational mind, even in hypothetical circumstances. At a local educational event  on palliative and hospice care, a woman in her 80s in the audience was attentive and engaged during the presentation. During the discussion that followed the presentation, she talked about how she wanted to look into becoming an organ donor.

But then, she asked the experts if her heart stopped and if she had decided to opt for CPR but it didn’t work, “Can’t there be a miracle?” In other words, before being pronounced dead, couldn’t there be some other way to revive her and enable her to live on? And would she be pronounced dead before her miracle kicked in?

We all want miracles, do we not? We want to have hope when all evidence points to the contrary. That’s why I found her question so poignant, so human. This woman, who had at first seemed to be a realist regarding the question of mortality – accepting it on an intellectual level – was at the same time wandering in the realm of magical thinking.

We’re all susceptible, truth be told. But there are a few things to keep in mind to avoid wandering into this realm ourselves.

I blogged about it for the website sixtyandme.com, and you can read it here:

Wishing you all a wonderful start to summer, this coming weekend!

Hard to Start That Conversation? Try Playing a Game of 32 Questions

You may be asking yourself, “Well, National Healthcare Decisions Day is coming up April 16, so what should I do to celebrate it?”

Okay, maybe you’re not asking yourself that question. Then again, maybe you don’t have to wait another couple of weeks to start having conversations with those closest to you about some serious subjects. Subjects like, what kind of care would be best for me if Ihad a serious illness? How do I feel about treatments and interventions like mechanical ventilation, feeding tubes and CPR?

It’s tough to start these conversations, of course, which is one reason why the majority of adults don’t do it. Or prepare advance care directives. But a Philadelphia-based company called Common Practice has come up with a way to help you with this, that’s clever, effective and fun. It’s a game you can play with two to five  players, called “Hello,” and it’s available on the company’s website for $24.95. And, no, I don’t have any connection or interest in this company.

I  had a chance to speak with Nick Jehlen, a founding partner of the company and lead designer of the game. What piqued my interest was this: underpinning what could be seen on first blush as a lighthearted approach to a weighty subject was in fact the result of a thoughtful and deliberative process of research, design and feedback.

Here’s how the game works. Each player gets a question booklet  with 32 questions (which you keep after you finish playing), and a number of “thank you” chips to give to other players if they say something you find particularly touching, helpful or insightful. You decide how to play: whether to limit the number of questions, or put a time limit on play. There are no wrong answers and really, no winners or losers. As the game designers point out, the most important rule is to listen.

Some sample questions:

In order to provide you with the best care possible, what three nonmedical facts should your doctor know about you?

Who haven’t you talked to in more than six months that you would want to before you died?

            If you needed help going to the bathroom today, who is the first person you’d ask to help you? Who would you never be able to ask?

            What music do you want to be listening to on your last day alive?

            What activities make you lose track of time?

            Write your own epitaph in five words or less.

One of the keys to the game’s effectiveness is that everyone has to answer the questions, so there’s a sense of sharing and no one (such as a person confronting a serious and/or life-limiting illness) is being “singled out” in the conversation.

“We wanted to create a sense of safety,” Jehlen said, noting that he has played the game “hundreds of times and my answers change. [The game] doesn’t force you into a corner. You can play it every year and see how you evolve.” He’s played it with his own parents, too, and said that they found it to be maybe a bit strange at first, but challenging and fun.

How the Game Evolved

Prior to developing the game, Common Practice’s business had revolved around designing tools to help people to communicate better in order to achieve greater workplace productivity and purpose.  When the founders started thinking about what ultimately became “Hello,” they spoke at length with hospice nurses, to learn more about what helps people to be resilient. One insight: families who had actually talked about death and dying were able to care for loved ones better than those who hadn’t.

They entered their game, then known as “My Gift of Grace,” in a design challenge run by the California Healthcare Coalition and were one of the winners. When they realized what an important project it was, and that it was the most meaningful work they had done, they decided to make it the focus of their business, Jehlen told me.

They did a Kickstarter campaign to raise money, and 440 people contributed. In devising the questions that would be part of the game, they queried their contributors for suggestions and reactions to sample questions. They were most interested in questions that generated more than a paragraph to answer. In the end, half of the questions in the game were devised by Common Practice; the other half came from backers.

About a year ago, they changed the name to “Hello,” because some of the feedback was that the name had religious overtones which made some feel left out.

Common Practice also makes “event kits” of the game available to groups of 25 to 50 people in health care settings, including hospitals and hospice agencies. It runs training and workshops for health care staff, aiming to encourage participants to feel more comfortable asking questions of their patients that are more, well, patient-centered.

How effective is this game? One measure: Research conducted at Penn State’s College of Medicine has shown that roughly three-quarters of the number of people who play the game subsequently go on to take some kind of advance care planning action, including creating an advance care directive.

Or, consider the response by health care professionals. After Nick Jehlen made a presentation about the game at the Mayo Clinic’s Transform conference in 2015, he invited attendees to play the game later on that afternoon. 150 people took him up on that offer.

 

 

Telling the Story of Your Life

I recently sat in on a terrific session at the 2016 Hospice Team Conference in NJ. about the importance of narrative in hospice care, presented by Jeremy Lees, LSW , chaplain and bereavement counselor at Holy Name Medical Center’s hospice, where I am a volunteer.

It started me thinking about how important it is that we write or record the story of our life — not only for our loved ones, but also for ourselves. To make sense of the arc of our life, our place in the world, our sense of purpose. And the best time to do this is when we’re healthy and vital!

Here’s my latest blog post from SixtyandMe, with some tips about how to get started.

 

6 Steps To Take for Better End-of-Life Care

I was honored recently to be asked by the Berkeley, California-based Greater Good Science Center to do an essay, based on my experiences as a hospice volunteer and reporting/researching my book. Here are the highlights:

* Educate yourself about the different key treatments for end-of-life care, so that you can make informed decisions.
* Start conversations with loved ones so that they are clear about your wishes for care.
* Understand the benefits of palliative care and hospice care and know when to ask for them.
* Learn how to communicate effectively with doctors and medical staff.
* Research nursing and assisted living facilities in your community, in case you need them.
* Advocate for better end-of-life care for everyone.

You can read the full essay here

A Necessary Look at the End of Life in an ICU

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They say a picture is worth a thousand words. But that phrase was probably invented before the advent of film and video. Recently I watched a remarkable 24-minute short film, “Extremis” (available now on Netflix) and I can tell you unequivocally that it is worth many, many thousands of words.

Set in the intensive care unit at Highland Hospital in Oakland, California, it is an unflinching view of dying. More precisely, it shows how the technology that can prolong our lives when we are desperately ill raises important questions about the difficulties in making decisions at the end of life, not only for the ill but also for those who love them and face the agony of impending loss.

It’s a relatively short film, but very powerful. I would liken its brevity to the short stories of Alice Munro, who can tell you more about the human condition in 25 pages than most novelists can. The film is the result of a fortuitous collaboration between Dr. Jessica Nutik Zitter, an ICU physician and palliative care specialist who’d thought about the potential impact of a film project ever since she had watched the 2012 documentary “The Waiting Room,” filmed at Highland Hospital; the film director Dan Krauss, who was not initially drawn to the subject of end-of-life issues but ultimately found the ICU to be a “truly fascinating world where science and faith intersect,” as he told Modern Healthcare;” and Highland Hospital. Filming took months. It won Best Short Documentary awards this year from the Tribeca and San Francisco International Film Festivals.

“Extremis” mainly follows the wrenching struggles of two families. We meet Donna, in the end stages of a form of muscular dystrophy and on a ventilator, her husband and daughter with her; and Selena, unresponsive after she had stopped breathing in the car on the way to the ER, now on a ventilator too after spending up to 26 minutes without oxygen. We meet her daughter and her brothers, too, each of whom has different beliefs about how to proceed. That these families allowed filmmakers to record them throughout their ordeals is truly remarkable – and a public service.

“We’re all gonna die…and it’s good to have a little bit of a say in how,” Dr. Zitter remarks at one point in the film. (Her upcoming book—Extreme Measures: Finding a Better Path to the End of Life— is due out in February.)

How do we express our own wishes? In the past several years, much has been written about the importance of signing an advance care directive; with it, if you face a medical crisis and cannot speak for yourself, the person you’ve chosen to speak for you would be guided by your wishes and values. And yet, only a small percentage of adults in the U.S. have actually done this.
That shouldn’t be surprising; how many of us really want to think long and hard about our own mortality? And how many of us can really envision what it might be like to live on thanks to the many mechanical inventions available to us?

Watch this film. You’ll have the clearest view I’ve seen of their reality. Moreover, you’ll see that in the absence of a directive, those closest to you will have the enormous and sometimes guilt-laden burden of making decisions for you, adding to the emotional turmoil that attends the end of life even in the best of circumstances. You’ll also see that decision-making can present moral and ethical dilemmas for the physicians treating you.

You can find advance directive forms for each state at Caring Connections, a program of the National Hospice and Palliative Care Organization, here.

Finding Quality Care for Serious Illness — Before a Medical Crisis Hits

IMG_1100 I’m excited and honored to tell you that this fall, I’m teaching a new two-session course called “Let’s Manage Late Life Well” at the Lois E. Marshall Institute for Learning in Retirement (ILR) at Bergen Community College in Paramus, NJ. The course will be offered on October 31 and November 7, from 10:30 a.m. to 12:00 p.m. You can register for this and other courses at the ILR starting on Monday, August 29.

Too often, caregivers and people struggling with serious illness face medical crises that leave them feeling confused, frightened and overwhelmed. The best way to prevent that feeling of being lost and powerless in the health care system is by becoming better educated before a medical crisis hits.

The course is designed to help people become better educated about what good quality care looks like; as well as how to communicate better with health care professionals; how to make better-informed decisions for themselves or their loved ones; and how to find the information we all need about the conditions that we are likely to face in late life.

“Let’s Manage Late-Life Well” is a “bonus” course, offered at no extra charge with ILR membership for the Fall 2016 and Spring 2017. ILR membership entitles you to four courses each semester, plus two additional “bonus” courses. Full membership fee for Fall 2016 and Spring 2017 is $215. Registration begins on August 29th for the Fall 2016 semester.

This course will cover:
• An overview of innovations in late-life care (including those in NJ).
• How to communicate better with our health care specialists.
• How to learn about the quality of care in hospitals and long-term care facilities.
• Better alternatives to conventional skilled nursing homes.
• Strategies and tips for those caring for loved ones with dementia.
• What you need to know about advance care directives vs. POLST (Physician Orders for Life Sustaining Treatment) forms.
• Dispelling the many myths about palliative and hospice care.
• Plus: Where to find help: useful resources and links for caregivers and for people contending with serious illness.

Saluting an Unlikely Hero

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Sometimes you find a hero in the unlikeliest of places. This week I came upon an obituary for Dave Schwartz, 63, a long-time Weather Channel meteorologist. He had twice overcome pancreatic cancer 10 years ago, but began his struggle anew with a stomach cancer diagnosis in 2015.

Mr. Schwartz had joined the Weather Channel in 1985, initially as a newsroom assistant at the same time that he was working for the Fulton County Health Department in Georgia. He became an on-camera meteorologist in 1991.

Cancer, like so many serious illnesses, is often enshrouded in silence and secrecy. It would have been understandable had Schwartz decided to simply take the time off that he needed to undergo treatment and then return to work without talking about his absence. Instead, he chose Feb. 4, of this year, World Cancer Day, to address his viewers.

This is some of what he said: “I want to let you know the reason why I have lost 35 pounds in the last five months is that I am being treated for cancer,” he said on camera. “Stomach cancer, of all things, for a foodie.”

The following month, he went public again, via an interview with Bailey Rogers, a communications specialist at the Weather Channel, for the website Medium. Rogers asked about the side effects of cancer and its treatment, most likely expecting to hear about fatigue, pain, discomfort, etc. Instead, Schwartz responded that “In a sense, having cancer and the impact it has on my life has really enriched my life tremendously through strengthening my relationships with people.”

He also talked about how he and his wife had become philosophical about his condition. He went on to say that “None of us is guaranteed tomorrow — we all know that. As far as I’m concerned, whether you have cancer or not we are all in the same boat. None of us really know that we have more time than what we have right now. So I’m no different than anyone else. I have my struggle, I have my cross to bear — other people have their crosses to bear — and let’s hope that we wake up alive tomorrow.”

I found Schwartz’s comments – not to mention the bravery in sharing his struggle publicly – deeply moving. And it made me think about how powerful storytelling is.

We can learn so much from others not only about the nature of some of the more pernicious illnesses that afflict people, but also about how we can confront illness – mortality itself – with something approximating appreciation for the gift of life in the moment and maybe even a hint of grace.

And it also made me think: Wouldn’t it be helpful if more public figures could follow Dave Schwartz’s lead and talk about the struggles they might be experiencing and, along the way, educate us about what treatment and living with illness is all about?

And while we’re at it, wouldn’t it be helpful if these folks could make some news by talking about and signing advance care directives? Maybe talk about how they thought about the prospect of measures like CPR, feeding tubes and intubation and decided, “Nope. Not for me.” And then maybe figure out a way to have it go viral, much as the “ice bucket challenge” did for ALS. That would be pretty heroic, too.

Keep It Moving: A Key to Well-Being

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You know the old cliché: Age is only a number. Well now there’s a study that suggests that it’s true; and that age alone isn’t the best predictor of health. I wanted to share some of the study’s findings because, at a time when we are assaulted daily with horrendous and dispiriting news on all fronts, this should give many of us a reason to smile.

Here’s what a large-scale study by a multi-disciplinary team of researchers at the University of Chicago found: psychological well-being, sensory function, mobility and health behaviors are essential parts of an overall health profile that predicts mortality better than age alone. (Italics mine.)

Rather than focus on medical issues, such as heart disease, cancer, diabetes, high blood pressure and cholesterol levels, these researchers came up with a different model of health that considers psychological, social and physical factors, such as mobility. It paints a different picture of how vulnerable – or not — we might actually be.

Demographer and study co-author Prof. Linda Waite said that “some people with chronic disease are revealed as having many strengths that lead to their reclassification as quite healthy, with low risks of death and incapacity.” On the other hand, though, some people considered healthy might have significant vulnerabilities that could affect their mortality or incapacity within five years.

What contributes to those vulnerabilities? Social isolation, as if we hadn’t guessed this before, undermines people’s health. So does poor mental health, like the depression that can accompany social isolation. Poor mental health is said to affect one in eight older adults. Poor sleep patterns, heavy drinking, having a poor sense of smell and walking slowly also undermine health. By contrast, being socially engaged helps keep us healthy, as does staying physically active. Mobility, in fact, is one of the “best markers of well-being,” according to the study.

And here is a not-so-fun fact: Breaking a bone after age 45 is a “major marker for future health issues,” the study concluded.

Among the more interesting – and counterintuitive – findings:
• Cancer itself is not related to other conditions that undermine health.
• Obesity seems to pose little risk to older adults with excellent physical and mental health.  
• Older men and women have different patterns of health and well-being during aging (and yes, women tend to live longer).

The study, part of the National Social Life, Health, and Aging Project, supported by the National Institute on Aging of the National Institutes of Health, surveys a representative sample of 3,000 people aged 57 to 85, done by the independent research organization NORC at the University of Chicago. You can read “An Empirical Redefinition of Comprehensive Health and Well-being in the Older Adults of the U.S.,” in the Proceedings of the National Academy of Sciences here.

So let’s get together with our friends and family, take a walk (being careful not to trip and break a bone) and raise a toast (though not too many) to our health. Let’s make sure we can smell the roses. Literally. And on a more serious note, let’s pay attention to what our communities are doing to help ease elders’ loneliness and isolation.

What’s Your Big Idea About End-of-Life Care?

The Aspen Institute Health Strategy Group wants to hear from us, by June 1explosion-1246507_640. Specifically, in advance of its Spotlight Health session in June, it wants to know: what is our big idea about end-of-life care?

Of course I couldn’t resist submitting my own two cents’ worth. Here it is:

From my vantage point as a hospice volunteer, seasoned journalist and author of a just-published book about end-of-life issues, my big idea is that at age 40+, hospice in the U.S. is in the midst of a mid-life crisis and needs a radical transformation. Not in its philosophy or system of care, but in how it is paid for. It’s time to start from scratch and design end-of-life benefits based on people’s needs, not on their prognosis.

Although hospice benefits are continuously being tweaked, their broad outlines have not fundamentally changed since its inception. But the very nature of the end-of-life experience now is far different than it had been in the 1970s, when hospice cared mostly for people with cancer. Hospice was not envisioned to address the needs of the frail elderly living with multiple chronic conditions, or the ravages of dementia, whose disease trajectories are certainly far less predictable – and often more complex — than cancer.

Two of the essential elements of the Medicare hospice benefit have come to haunt us. First, it is based on prognosis, that is, it is available for a limited time – six months if the illness runs its normal course. Second, it requires that a person give up any treatment or care that might be deemed “curative.” The choice is stark: cure or care. Either/or, but not both. Hardly surprising, then, that so many people do not even choose hospice care until it is very late in the course of their illness. Too late, in my view, to benefit fully from what this holistic, interdisciplinary and profoundly compassionate care can offer.

I believe we have come to a “tear down this wall” moment in end-of-life care. Tear down the wall that separates palliative care and hospice care; end the tyranny of the six-month cutoff for eligibility. Tear down the wall that separates people who still want to continue treating their illness from those who can accept a natural death. It’s time to develop a health care policy and payment system that embraces concurrent care without costing taxpayers more than the current system that is fragmented, costly, often dysfunctional and unsustainable.

End-of-life care involves so many intertwined issues that must be addressed. Just a few: better education and training for physicians and nurses; better training and better pay for the home health and personal care aides who are on the front lines of caring for the very ill; coordinated care aimed at helping people live as well as possible and in their homes as long as possible, without hospital readmissions; focusing more on culture change and person-centered care in long-term care settings; and more effective ways of providing dementia care.

But public policy changes would have a huge impact on all these issues. How do we get to a better future? In a June 2015 Health Affairs article about what is ahead for Medicare’s next 50 years, former Senate Majority Leader Tom Daschle defined his prescription for success as: good public policy, superior technology and enlightened leadership. It seems to me that this prescription misses one element, which is public engagement. Transforming hospice care will likely not happen without vocal and insistent advocacy from all of us. So it’s time for my fellow aging baby boomers to tap back into our activist genes and start insisting on the kind of care we are all going to need in the not-so-distant future.

The Aspen Institute Health Strategy Group is part of the Health, Medicine and Society Program at the Aspen Institute. Co-chaired by former US Health and Human Services Secretaries and Governors, Kathleen Sebelius and Tommy Thompson, its 24 members are senior leaders across influential sectors: health, business, media, technology and more.