Category Archives: baby boomers

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.

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.

You’re In a Nursing Home. Now What?

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.

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.

Can We Aim to Stay Forever Young?

May being Older Americans Month,two recent stories caught my eye for very different, but related, reasons. The first told the story of Ida Keeling, a 100-year-old woman who just set a new world record for the 100-meter dash in her age-80-and-up category.

freedom-307791_1280Who could not feel deeply impressed and inspired, reading about how she overcame struggles that might have crushed the fainter-of-heart, and how she discovered renewed pleasure in fitness and competition? Who could not watch the video of her sprinting across the finish line at the Penn Relays in Philadelphia and not think, now there is something to aspire to? If not the actual running part, then certainly in pursuing another endeavor of our own.

And then there was the Wall Street Journal story, about how people from all over the globe have tracked down Nir Barzilai, director of the Institute for Aging Research at the Albert Einstein College of Medicine, to volunteer to be part of a study that Dr. Barzilai and his colleagues are working on – even though patient recruitment is still a year away, reporter Jennifer Levitz reported.

Why are they clamoring to reach Dr. Barzilai? Because the planned study will use the generic drug metformin to see if it can delay or prevent dreaded illnesses of old age, including heart disease, cancer and dementia. Gerontologists at 14 aging centers around the U.S. will follow 3,000 seniors for six years, half of whom would get the drug, with the others receiving a placebo.

Levitz interviewed a number of these would-be volunteers and discovered that they were, uniformly, feeling well and living very active lives and feared a future of frailty and decline. “It’s not so much a fear of dying, it’s a fear of living in pain and agony and being a burden to everyone else and my wife and so forth,” Bill Thygerson, 70, told Levitz.

These two stories struck me because they both seemed to personify our never-ending quest for youthfulness and vitality. Living the robust life, fully and independently. Isn’t that what we’re all aiming for? I’m as prone as the next aging boomer for valuing that. I don’t feel “old” and like most of my peers, I keep revising my idea of the very definition of the word “old.”

But the fact is, 60-ish isn’t the new 40. Or 50. So for me, these stories prompted a reaction of “Yes, but…” We all can’t be Ida Keeling. In reality, all it takes is just a little blip in the flow of our days, just a hiccup in our active and independent lives, to remind us that sometimes we have to take a pause and accept a little help. And looking ahead, many of us will need more than a little help to ease our days whether we remain in our homes or not.

That’s why I found this interview with Ai-jen Poo so refreshing. She is the director of the National Domestic Workers Alliance, co-director of the Caring Across Generations campaign and author of The Age of Dignity: Preparing for the Elder Boom in a Changing America. Right now several states are experiencing a shortage of home health and personal care aides. At the same time, those jobs are among the lowest paid and least valued in the country. So it’s up to all of us to begin talking about what we’ll need to live as well as possible in years to come and, equally important, figuring out how to value and train these workers better and best to pay for it all. Let’s remember that while we’re busy looking, feeling and acting forever young.