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:
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.
I’m a big believer in the benefits of person-centered culture change in long-term care settings like nursing homes, where the aim is to focus more on the feeling of “home” than on “nursing.” According to the Eden Alternative , a nonprofit organization that promotes, supports and teaches about person-centered culture change, currently there are 190 skilled nursing facilities on its registry, 45 percent owned and operated by for-profit companies and 55 percent by nonprofit, county and government sponsors.
But these homes still represent a small fraction of the total number of skilled nursing facilities in the U.S. What if you, or someone you love, must make the transition to a nursing home now?
Fortunately, many excellent resources are available to guide you in making your choice. Deeply buried in Medicare’s Nursing Home Compare website, for example, is an excellent 56-page booklet called “Your Guide to Choosing a Nursing Home or Other Long-Term Care.” Fewer resources are available to guide you about how to live well once you’re there, however.
That’s where Eleanor Feldman Barbera, PhD, comes in. A seasoned nursing home psychologist, “Dr. El,” as she calls herself on her website and blog, says that her goal is “to make long-term care a place I’d want to live when it’s my turn.” She is called in to work with residents if they are causing trouble – e.g., arguing with staff members or other residents, or refusing to take medications, or participating in rehab, or are depressed.
Her approach is one of empathy, pragmatism and humor. Sometimes it’s a matter of residents adjusting to the reality of not being able to do everything for themselves, she pointed out.
Generally, she advises having patience and reasonable expectations. “Come in with an open mind,” she said. “Try to partner with the team as much as possible.” While in person-centered homes your schedule revolves around you, your preferences and interests, that is not the case in conventional facilities, where schedules are set by the institution. So here’s one hint: be cognizant of the home’s schedule and when you need assistance, try to seek it before shift change times, when aides and nursing staff are particularly busy.
There’s more advice in Dr. Barbera’s book, “The Savvy Resident’s Guide: Everything You Wanted to Know About Your Nursing Home Stay But Were Afraid to Ask.”
In more than 20 years of doing this work, Dr. Barbera told me. she’s seen little movement toward culture change in long-term settings, although now people seem to at least be aware of the concept. “It needs leadership at the top that believes in it,” she said. “It needs a constant push in that direction.”
One thing that might spur change is the sheer size of the aging baby boomer generation. In Dr. Barbera’s view, boomers are thinking differently about their own late life prospects. Generally, she said, they demand more service, have higher expectations, are more litigious and feel freer to speak out when they perceive something happening that isn’t right. Perhaps they will want co-habitation with other elders, or inviting college students to live with them, she said.
Or, perhaps knowing about the existence of person-centered care alternatives, they will begin to insist that conventional nursing home operators begin to embrace its principles.
To find a long-term care facility near you, go to the Eden Alternative Registry
And if you want to get a better sense of how a nursing home works when it embraces person-centered culture change, do take the time to watch this 22-minute video, Perham: Welcome Home. Located in Minnesota, the home includes six “households” of 16 residents each.