Tag Archives: Advance Care Planning

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

extremispic

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.