Tomorrow, May 4, I’ll be testifying at a public hearing about the “Needs of Older Adults in Bergen County.” I’ll be talking about innovations that combine at-home health care with nonmedical supports, as well as home care. Here’s a look at my testimony:
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.
You may not know Sandi McCann’s name just yet. But my guess is that by the end of this year, many more of us will know her and the work she is doing. McCann’s aim is to create nothing less than a national movement – training direct care workers to be highly skilled, professional and respected caregivers for elders and paying them accordingly as they learn and going forward.
Here’s why this is at once heartening, important, and challenging:
As our population ages, the simple truth is that more of us are going to need help to enable us to remain in our own homes as so many of us would prefer to do. The Milken Institute School of Public Health at The George Washington University, for one, estimates that by 2050, 27 million of us will need some form of long-term care, more than double the number in 2010.
That will require an army of direct care workers – including certified nursing assistants, home health aides and personal care aides – to help us with the basics of daily living. Not to mention the importance of keeping a watchful eye on us to note troubling changes in our mood, our physical well-being or our mental functioning. It can be difficult, physically taxing work that requires strength, patience and presence of mind in the face of unexpected events or crises.
And yet, ironically, providing direct care for our most vulnerable citizens requires the least amount of training, experiences the highest turnover rate – and pays the least — of the caring professions. As the Institute of Medicine (now known as NASEM Health) first noted in a 2008 report on “Retooling for an Aging America: Building the Healthcare Workforce,” your dog groomer requires more training than that. (And may be paid more, to boot.)
And the work is getting harder. Care has become more complex. Often people are discharged from the hospital or a post-acute rehab facility before they are able to fend for themselves well. The effects of a stroke or dementia can be pronounced and challenging. And unlike long-term care settings, there are no policies and procedures in place to guide caregivers facing challenging situations in the home.
Here’s where Sandi McCann comes in. Her own commitment and passion for elder care grew from her experience as a caregiver for her stepmother, afflicted with Lewy Body dementia at the end of her life. She left a career in corporate marketing and in 2012, she and her sister Maureen started HomeCare of the Rockies, a home care agency in Boulder, Colorado. “I love working with older adults,” McCann told me. “They need to know that they’re heard, loved and cared for. And they need the right kind of care support for that.”
The Idea: A Call to Action
As the agency grew, a serious workforce shortage hindered its ability to serve as many people as it could have. Always supportive of the importance of training, as well as imparting the agency’s mission and values to its team of caregivers, McCann began to closely follow the work of Ai-Jen Poo of the National Domestic Workers Alliance and Caring Across Generations, and the “Fight for $15” movement. She started formulating her own idea for a call to action.
McCann started Caregiver Call to Serve, a subsidiary of HomeCare of the Rockies. Its mission will be to create “a sustainable network of care to help older adults live meaningful lives, not just long ones.”
This year will be its pilot program, providing training to all of HomeCare’s 90-person team and acting as a sort of “incubator” during which the curriculum may be adjusted before it is introduced nationally. HomeCare of the Rockies will own this program fully, and will offer it to other organizations and agencies, offering “train the trainer” meetings.
Key to this initiative is what McCann calls “the triad” – Learn, Earn and Care. The “learn” part of the program includes 100 hours of professional caregiving education, 40 hours of which is online. Forty percent of the curriculum addresses issues of Alzheimer’s disease and other dementias.
The “care” part of the initiative aims to uphold professional standards and the integrity of the caregiving tradition, McCann said.
The “earn” part is what sets this initiative apart. People enrolled in learning will get income boosts four times: after 25 hours, 50 hours, 75 hours and 100 hours of training, to reach $15 per hour. McCann said that that is nearly 40 percent higher than prevailing wages in Boulder.
McCann aims to launch Caregiver Call to Serve in May. It will screen a short video telling its story at a theater in Boulder, to be followed by a Town Hall meeting, all of which will be livestreamed. It has been accepted into the U.S. Dept. of Labor’s ApprenticeshipUSA program – a network of 150,000 employers representing more than 1,000 occupations — and will be working with the Department of Labor and Employment in Colorado to recruit and train caregivers.
There are more than 12,000 home health agencies in the U.S. There are many quite good caregiver and home health aide training programs too and I’ll focus on a few in future blogs. Will Caregiver Call to Serve break through the pack and, indeed, start a movement? I’d love to see it happen, because it’s not a moment too soon.