Category Archives: culture change

baby boomers, Book Reviews and News, culture change, elder care, patient education, Uncategorized, wellness

‘Elderhood’: A Necessary Look at Embracing Aging in All its Stages

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I wonder if Madonna, 60, thinks of herself as old.

I’m guessing probably not, but maybe she should. Think of how much she might contribute to the discussion about what it means to age, to grow older well, and how we can facilitate that for all of us, not just for a privileged few.

This thought might never have crossed my mind except for having read Louise Aronson’s extraordinary new book, “Elderhood: Redefining Aging, Transforming Medicine, Reimagining Life,” and having the opportunity to interview her about it. Aronson is a geriatrician and professor of geriatrics at the University of California San Francisco.

In the book, an amalgam of facts, patient stories, tales of Aronson’s own education and medical experience — as well as references to history, anthropology, literature and scientific studies — combine to shine a light on the necessity to rethink aging itself. Bonus: reading it also provides the great pleasure of following the path of a unique and invaluable mind and heart.

In some ways the book is an indictment of our medical system, which recognizes that chronic illness and aging are a major health challenge, but often treats those who experience it or the specialists who treat it as second class citizens. And she has a number of recommendations for changing the system. Among the many reasons why the need for change is so compelling: People who are 65 or older represent 16 percent of the U.S. population, but nearly 40 percent of hospitalized adults; with a few notable exceptions, hospitals as they are designed and operated currently present a great many challenges for elders.

“Elderhood” is also a road map for those of us who are aging to tap back into our boomer activist genes and insist on better care as we go forward, not only from the health care system, but also from policymakers who have a big impact on how that care is provided and paid for. As for ourselves individually, it’s time to discard the clichés and stereotypes of aging we may have internalized over the years.

“Elderhood is life’s third and final act; what it looks like is up to us,” Aronson writes. “This third act is not a repeat of the first or second. More often it is in life what it is in drama: the site of our story’s climax, denouement and resolution.”

The book dispels a number of myths about what aging looks like. “Old age is only partially determined by biology. It’s long, varied, relative and relational,” she writes, noting that “a good part of the suffering in old age is manufactured by our policies and attitudes.”

Owning Our Elderhood, in All Its Substages

Elderhood comprises a number of substages and in Aronson’s view we need better language for those substages. As an example: at 55, she has taken to referring to herself as old when she teaches her medical students at UCSF (who, she said, amused, most likely consider her “old” anyway).

“The more we own it, the better. We reform it,” she said. Much as the LGBTQ community has taken back the word “queer” and succeeded in taking the awful sting out of it, we can “reclaim, create or repurpose simple words to redefine themselves and their place in society,” she writes.

Aronson stresses that the numbers of elders who find satisfaction and purpose in their lives and consider their health excellent – despite having to contend with a variety of ills – are legion. Studies have shown, for example, that anxiety rates fall around 60. In their 80s, she has found, for the most part people are quite satisfied, more so than in their 40s and 50s.

“Adaptability is a huge defining characteristic of elderhood,” she told me.

In her elderhood clinic at the University of California San Francisco, Aronson treats people ranging in age from 60 to 102. (Fun fact: The World Health Organization, among others, defines people aged 60 and up as old.) So, she points out, there are at least two generations within this group.

“It’s time for elderhood to take its rightful place alongside childhood and adulthood,” she writes. That includes the “young-old” and the “old-old” and all the stages in between, under the umbrella of elderhood.

Aronson explained that in her clinic, dealing with the “whole human being” is of first and foremost importance. She focuses on functional status because “that’s a better predictor of whether [patients] will wind up in the hospital or not.” Together, she and her patients discuss preferences and goals – not just medical, but goals of life. She also wants to know about “who’s in their world?” In other words, how does the person live, who is available to be supportive, what obstacles or barriers lie in the path to a better quality of life and how does the person actually feel about aging. “That impacts recovery,” she said. The clinic practices what she calls the four “P’s”: prevention, purpose, priorities and perspective.

“Failing to fully acknowledge the ongoing human development and diversity of older Americans is bad medicine and flawed public health,” she says, noting that “we can only make aging good if we make it good for all of us.”

I could go on quoting Aronson, but I won’t. Instead, I encourage you to read it to discover the many gems to be found.

Maybe Madonna should read it too.

Advance Care Planning, baby boomers, culture change, death and dying, elder care, hospice care, palliative care, patient education, Uncategorized

Yea or Nay on Medical Aid in Dying?

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Hawaii has become the latest state to enable medical aid-in-dying, and  public opinion has been shifting more in favor of it in the past couple of years.  It’s still an enormously controversial subject and too often advocates on both the “pro” and “con” side shed more heat than light on it.  I wrote this blog piece for http://sixtyandme.com in hopes of providing a little light.

Spoiler alert: I am opposed to medical aid-in-dying. Not for religious reasons, or because it violates the medical principle of “do no harm” or even because of fear of the “slippery slope” that would harm the most vulnerable among us.

In short, it seems to me that this evolution is more of a striking and continuing indication of the sorry state of end-of-life care currently, than it is a rational health care solution for those suffering terminal illnesses.

You can read the piece here: http://sixtyandme.com/exploring-both-sides-of-the-physician-aided-dying-conversation/

baby boomers, caregiving, culture change, dementia care, elder care, home care, hospice care, long-term care, nursing homes, patient education, wellness, workforce education

A Virtual Walk in Others’ Shoes

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It’s such a topsy-turvy world right now that if you’re like me, it might take more than a little time spent viewing cat and puppy videos to elevate your mood. So I’m glad to share the story of Embodied Labs.

When I think about the future of health and wellness care for elders, one looming issue is how we can attract a broad and well-trained workforce to understand and help us through a gauntlet of serious illnesses or chronic conditions. So it is enormously heartening to learn about a group of young professionals who have dedicated themselves and their business to this work.

If compassion and kindness are rooted in the ability to “walk a mile in someone’s shoes,” Embodied Labs – which didn’t exist until 2016 — gives that dictum the ultimate technological boost. In short, it sits at the intersection of health care training and virtual reality storytelling.

Embodied Labs is a for-profit corporation, but it is very mission driven, according to Erin Washington, co-founder and head of customer experience. “We’re helping to build the world we’d like to see when we’re older,” she told me, adding that “we don’t consider ourselves a VR [virtual reality] company. We’re using VR because it’s the best solution to achieving the outcomes we’re aiming for.”

Washington’s professional background is in curriculum development. Carrie Shaw, CEO and founder, got her Master’s degree in biomedical visualization (which was once called medical illustration) in 2016. But it was their experience as family caregivers that provided the impetus for creating Embodied Labs.

Shaw tells the story about how she became a caregiver for her mother, diagnosed with early onset Alzheimer’s, and who also struggled with macular degeneration. She created a tool – a simple pair of eyeglasses with patches in two different places – to give her mother’s aides a sense of what it was like to see the world from her mother’s perspective. What if you could use science, storytelling and virtual reality to convey the experience of an aging person? Would that help health care providers, be they professionals, direct care workers or family members, become more effective and better at communicating, in their caregiving efforts?

Embodied Labs uses film combined with interactivity that literally enables a person to walk in the shoes of a person with serious health issues. So far there are three “labs” available to the company’s subscribers: “Alfred,” a 74-year-old African-American man who suffers from macular degeneration and hearing loss; “Beatriz,” a middle-aged Latina woman who has been diagnosed with early Alzheimer’s disease; and “Clay,” a 66-year-old veteran who has been diagnosed with Stage IV lung cancer and faces end-of-life issues and participates in hospice care.

Voice interaction is one element in the Beatriz Alzheimer’s lab. At one point, a person “embodying” Beatriz is asked to read a few sentences; but the words come out garbled and make little sense. It conveys what it might feel like to try to communicate but to be unable to express what you mean.

For the Clay end-of-life lab, Washington’s research included spending two days in a hospice facility, shadowing members of the hospice team. The lab’s credits list 75 people, including actors, those who worked in production, post production and subject matter experts.

Creating a lab is a research and labor-intensive process. Once a topic is decided upon, staff members talk to subject matter experts as well as family members, then decide on learning outcomes they want to achieve. All of that goes into script writing. Then the film is produced.

The Alfred lab, the company’s first, was created by an interdisciplinary team, with content experts from the University of Illinois Chicago, University of Illinois Urbana Champaign, Wake Forest School of Medicine and North Carolina School of the Arts, with representative input from students and experts in the fields ranging from biomedical visualization to geriatrics and health informatics systems. (A white paper detailing the impact of the lab on 200 second-year medical students at the University of Illinois-Chicago in October 2016 is available on the company’s website.)

At first, the company’s subscribers were mostly in academia. But now it has long term care and home health care companies on board. They’re also in talks with nonprofit organizations and with individuals who do corporate training; public libraries and Alzheimer’s groups represent other potential subscribers.

Looking ahead, Washington believes that in 2019 virtual reality will be more available and affordable for consumers, which could be a boon for family caregivers. And while Embodied Labs is focused on aging issues now, the company is looking at experiences of other vulnerable populations too.

“We try to explore difficult subjects, not skills-based training,” Washington said.

So far, the company’s labs have focused on what happens to a person in his or her home setting. The next lab will focus on the transition from living at home to a skilled nursing facility. It will likely include such elements as difficult conversations, the family dynamic, how long-term care can meet a need, what’s different about an institutional setting.

Washington told me that “I would have laughed three years ago if someone had said you’d be starting a company.”

And I’d say, we should all be glad that they did.

Advance Care Planning, baby boomers, caregiving, culture change, elder care, LGBT issues, long-term care, nursing homes, patient education

It’s Pride Month. Don’t Overlook Elders

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Because June is LGBT Pride Month, I wanted to talk about an issue that rarely gets the attention it deserves. It certainly has not been raised in the midst of the discussion following the Supreme Court’s decision over a baker’s right not to bake a wedding cake for two men.

The fact is, when advanced illness strikes, elders who are gay, lesbian, bisexual, transgender or gender non-conforming face more challenges than their heterosexual peers. They are likely to have more complex health conditions than their heterosexual peers, made worse by postponing or not seeking care. Social isolation is a major issue as LGBT seniors are three to four times less likely to have children, twice as likely to live alone and twice as likely to be single. And they may be in poorer financial straits. Going back into the closet out of fear of neglect, disapproval or abuse, is not uncommon.

Their fears are not unfounded. In Spring 2011, six organizations who advocate for elders and for the LGBT population published a study: “LGBT Older Adults in Long-Term Care Facilities: Stories from the Field.”  Among the highlights: Only 22 percent said they could feel open about their sexual orientation with staff at a nursing home, assisted living or other long-term care facility. Of those who lived in long-term facilities, or cared for those who did, the most frequently reported problem was negative treatment from other residents, followed by verbal or physical harassment by staff. Moreover, 51 percent reported staff refusing to provide basic care (such as toileting, bathing or feeding.

Some respondents shared a litany of sorrows and stories of lives derailed,  couples separated by family members who had legal authority over the facility resident; feelings of loneliness and isolation because of disapproval by other residents or staff; having aides attempting to get people to “repent” for their sins; choosing to go back into the closet for fear of neglect or harm.

For those living with HIV, there are associated issues to worry about, including cardiovascular disease; cancer (non-AIDS); liver, kidney and neurological diseases; osteoporosis; and frailty. Up to 30 percent of people living with HIV have abnormal kidney function, which, untreated, can be fatal.

And if  contending with serious illness is a challenge for gay and lesbian people and those living with HIV, it presents even more hurdles for transgender individuals. Owing to a combination of mistrust in the health care system and experience of rejection, discrimination or simple lack of medical knowledge by health care professionals, transgender individuals are at a higher risk for long-term diseases.

But in the midst of this sorry state of affairs, many people and organizations are working to make LGBT elders’ lives better: to make them feel more welcome in senior housing and long term care settings; to train direct health care workers to treat them more equitably; and to address their needs with expertise, kindness and compassion.

One example is Garden State Equality (GSE), a large LGBT organization in New Jersey, where Bianca Mayes, Health and Wellness Coordinator, heads the organization’s  Pledge & Protect program. The program is designed to educate all health care providers, including nurse practitioners, doctors, therapists, dentists and other direct service providers, as well as staff in long-term care developments. It also urges service providers, organizations and long-term care facility owners to pledge their commitment to advancing equitable treatment.

Three levels of training are offered, and training covers four general elements: an exploration of gender identity terminology; an overview of historic and current discriminatory practices; general health care disparities and needs (lack of insurance, transportation, poverty, homelessness, lack of legal protection, lack of cultural competence); and recommendations, including ways to design intake forms to be inclusive.

Why focus on intake forms? They are a person’s introduction to a care setting and they can either make that person feel welcome, or alienate and intimidate him or her. Garden State Equality has designed a template for an inclusive intake form, which it shares with trainees. (You can contact mayes@gardenstateequality.org for a copy.) That has been particularly well-received because, as Mayes pointed out, the intake form “is their Bible.”

Mayes told me that “People want to do the right thing; they just don’t know how.” For example, most people – LGBT or heterosexual — aren’t asked about their sexuality, orientation, history or gender identity. She stressed that “if you apply these practices to everyone, it’s not uncomfortable anymore.”

Mayes started implementing the program in November 2017. It has reached more than 125 health care professionals. GSE has also sent out information to seven sites in two counties in New Jersey. This coming weekend, Garden State Equality and the Green Hill senior living development, will hold a one-day LGBT Senior Housing and Care Expo that will include speakers, panels, vendors and a networking lunch. It will be free to the public. This summer GSE plans to host 10 focus groups serving all 21 counties to help produce a statewide needs assessment.

GSE estimates that there are some 100,000 LGBT men and women over 55 living in New Jersey. Mayes’ biggest hope is that more health care providers will reaching out to the LGBT community.

“They’re not necessarily going to come to you and their needs are dire,” she said.

 

 

 

 

 

 

baby boomers, culture change, elder care, patient education, wellness

It’s Never Too Late to Get Creative

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Retired actors Dimo Condos and Charlotte Fairchild during rehearsals for “A Midsummer Night’s Dream,” featured in the documentary film “Still Dreaming.”

We all know how good exercise is for our sense of well-being and how important it is to incorporate it into our lives. As it turns out, involvement in the creative arts is remarkably beneficial too.

Here’s my latest blog post about it from Sixtyandme.com

http://sixtyandme.com/how-to-get-involved-in-the-creative-arts-in-your-60s/

If your imagination is captured by the idea of helping elders express themselves creatively, or you’d like to get involved yourself, here are links to additional information, toolkits and resources:

Creativeaging.org (National Center for Creative Aging).  Among its resources: toolkits on  Teaching Artist Training and a Creative Aging Toolkit for Libraries.

Artsandaging.org (Sponsored by the National Guild of Community Schools of the Arts, the National Center for Creative Aging, and the New Jersey Performing Arts Center).  Publishers of  Creativity Matters: The Arts & Aging Toolkit

artpridenj.com/resources/aahnj-resources/ (ArtPride New Jersey Foundation). Has an extensive collection of arts and health links, research and publications, as well as links to arts agencies in 25 states, model programs, best practices and research and funding.

 

baby boomers, Book Reviews and News, caregiving, culture change, elder care, Medical Crisis, patient education, wellness

On the Radical Power of Conversations

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When you’re sitting and waiting in your doctor’s exam room, are you thinking of yourself as a revolutionary? Victor Montori, MD, wants you to.

Dr. Montori, physician and researcher in the science of patient-centered care at the Mayo Clinic, has spent considerable time addressing other physicians and physician groups about the failings of what he calls “industrial health care.” That it fails to notice patients – in the sense of not listening to patients, not understanding nonmedical events in our lives, not paying attention to what we value most. That it standardizes practices for patients like this, rather than caring for this patient.

But in short, he believes it is time for a patient revolution led not by physicians but by the public. Health care reform – itself no easy feat to accomplish, much less debate – is not enough, he says: “It is time for a patient revolution not only because it has patient care as its goal but also because it believes citizens — healthy people, patients who are not too sick to mobilize – must lead the way.”

If there is a manifesto for this nascent movement, it is Dr. Montori’s book Why We Revolt. The book’s essays describe what is wrong with our health care system, how it has corrupted its mission, how it has stopped caring. It does not get into the weeds of national or state public policies, or explore alternatives to the kind of financial incentives that help perpetuate our current system, but it does propose “a revolution of compassion and solidarity, of unhurried conversations and of careful and kind care.”

A few nuggets from the book:

“If completely successful, care should enable patients to be and do, minimally hindered by illness and treatment.”

“What actions to take depend on the patient situation, the options available and what patients value. For most people, the situation they face is never simply medical.”

Minimally disruptive care focuses on “advancing the human situation of each patient with the smallest possible health care footprint on their lives. It calls for patients and clinicians to shape care to respond well to each patient’s situation in a manner designed to fit easily within chaotic lives.”

“Shared decision making is an empathic conversation by which patient and clinician think, talk and feel through the situation and test evidence-based options against the patient’s situation. [It] is a human expression of care.”

“Care is a fundamentally human act, one that manifests in the dancing art of conversations…A revolution of patient care must harness the power of conversations.”

In 2016, Dr. Montori founded The Patient Revolution, a nonprofit organization whose mission is “to arm people to tell stories; stories about their lives, stories about their capabilities and limitations, and stories about what risks, benefits and trade-offs look like from their point of view. We want people to tell these stories in exam rooms and hospital rooms, in their communities and in the rooms where decisions get made.”

The Patient Revolution is a multidisciplinary team of collaborators with backgrounds in clinical practice, clinical research, design, health policy, and storytelling. The team, which has spent more than 10 years developing tools and programs to help patients and doctors communicate better, have done extensive work in shared decision making and minimally disruptive medicine.

I spoke with Maggie Breslin, director of the organization, who was also part of that team at the Mayo Clinic. She said that the Patient Revolution’s aim “is for patients, caregivers and communities to drive change. It feels like what health care is supposed to be about.”

The team’s focus right now is on reaching out to individuals at the community level. Currently they are partnering with communities in Minnesota, to co-develop issues around health care access. “It’s still early days,” she noted.

Useful Communication Tools

It’s said that political campaigns are conducted in poetry, while governance is conducted in prose. The same might be applied to the Patient Revolution. While Dr. Montori may have the soul of a poet, the organization’s website offers very practical prose guidance to help us navigate our conversations with our physicians.

For example, here are five questions they encourage you to think about, write responses to and practice how you’ll ask them:

I want to talk about…

It is important to me because…

It might help you to know…

I want this conversation to lead to…

I’m nervous this conversation will lead to…

Also useful are tools to help you frame that conversation with your doctor by talking about your life and your values. For example:

What is one nonmedical thing about your life that you think the doctor should know?

What is one thing your doctor is asking you to do for your health that is helping you feel better?

What is one thing your doctor is asking you to do for your health that feels like a burden or feels harder than it should?

Where do you find the most joy in your life?

As the late poet, feminist and civil rights activist Audre Lorde wrote, revolution is not a one-time event. But if you’re starting to feel more like a health care revolutionary now, and you want to find ways to advance the movement in your community, you can find ways to get involved at http://patientrevolution.org. You can also order Dr. Montori’s book there.

 

 

Advance Care Planning, culture change, death and dying, elder care, hospice care

Saluting an Unlikely Hero

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WeatherChannelpic copy

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.

baby boomers, Book Reviews and News, culture change, elder care, long-term care, nursing homes

You’re In a Nursing Home. Now What?

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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.