Category Archives: patient education

For the Skills We Never Learned in School

Did you know that today 20 million family caregivers regularly perform a range of tasks for family members or friends? That’s according to AARP. The fact is, many of us are – or will become – caregivers, and that most of us have never been trained to do some of the often complex tasks that will be needed.

Fortunately, there’s more and more online help available to caregivers. So, in honor of National Family Caregivers Month, here’s my latest blog post for Sixty and Me about some of the instructional videos available now:

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

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.

What’s Your Mountain?

A year before Isabella de la Houssaye reached the summit of a 22,840-foot-high mountain peak in the Andes with her daughter Bella, she had been diagnosed with stage 4 lung cancer.

The 55-year-old, an outdoors enthusiast, and her husband David Crane had five children, aged 16 to 25, all of whom had conquered outdoor adventures together with the family and as individuals. So after recovering sufficiently from grueling cancer treatment and feeling stronger, Isabella was determined to have other adventures with each of her children, individually, in large part to impart life lessons to them.

The climb to the top of Aconcagua in Argentina with college-junior Bella, with a team that included a New York Times reporter and photographer, is a remarkable story of almost unimaginable challenges, courage, grit and determination. It was featured in a lengthy article in the Times that you can read here.

One passage in the story that I found especially moving – and thankfully its lesson is not dependent on climbing a mountain to learn from – records Isabella’s attitude about illness:

“So much of who I was was defined by my physical strength,” she said. “It’s definitely hard being sick and saying goodbye to the person you were before. You have to redefine yourself, and you don’t want to define yourself as a sick person. I’m learning that you have to find acceptance with the decline.”

Facing Mortality Head-On

Her story is inspiring, to say the least. But I must admit that after I read it, I knew that if at some point I am diagnosed with a life-threatening illness, my first thought would not be: let me call my son and propose that we climb a 22,840-foot-high mountain together. As I kept thinking about Isabella’s ultimately successful ordeal, though, I wondered: what would I do (after emerging from a period of hiding and mourning my life under the covers)?

It’s an important question, one that many of us don’t think about much. How do I know that? For the past several months, I’ve been giving “Conversation of Your Life” talks to various groups. It’s all about advance care planning: having the conversation with loved ones about your treatment preferences if you cannot speak for yourself; choosing a health care proxy; preparing an advance directive; and communicating with your doctors about what you want and what you don’t want. Essential issues.

What I try to stress, though, is that the first and most important part of this process of communication is to communicate with yourself. That is, to confront your mortality head-on. So much flows from that. It isn’t all about medical treatments, just as serious illness itself isn’t just a medical issue. It’s about what you feel you want and need to do before you can no longer do it. It’s about how you want to live the rest of your life – honoring your sense of what gives your life meaning and purpose. It’s about the kind of legacy you want to leave. It’s about who you want to surround yourself with. And unfinished business to attend to.

When I talk about this fundamental part of communication, I sometimes ask my audience, who has given some thought to this? What are you envisioning? The response? Crickets, typically. Either no one has given this any thought, or people feel too shy or embarrassed to share.

Sharing Your Values

So I’ll share some of what I’d like. If I am gravely ill and still have my wits about me, I’d like a big good-bye party, with lots of food and lots to drink. I’d like to hear from family and friends about what I’ve meant to them, what they’ll remember, how I’ve affected them and funny stories they can tell. All the wonderful and moving things that people say at funerals that the deceased don’t get to hear. (At least we don’t have any evidence that they do.) I want to hear it before I go.

And, speaking of food: We’ve been hosting Thanksgiving and Passover for decades and in recent years our small family has happily grown to include seven grandchildren and cousins’ grandchildren, aged six and under. As you might imagine, these events are like organized chaos, but always seem too short. One reason I love to keep doing this is that I am hoping that all the younger-generation cousins and their children will continue to recognize how precious these times are and will keep the tradition going.

Clearly, Isabella had grander things in mind, but fundamentally she wanted to impart her values and wishes to her family. She succeeded in accomplishing what she set out to do. After reaching the summit, Isabella said, “It was so important to me that Bella and I have this experience together. I really wanted her to see that when things get hard, you can find a place inside yourself to keep going.”

An important lesson for all of us.

What’s your mountain?

A Senior’s Guide to Navigating Medicare for Mental Health Treatment

(Note: This is a guest blog, from Teresa Greenhill, co-creator of MentalHealthForSeniors.com, a website dedicated to providing information on physical and mental fitness.)

Mental health is a serious issue among seniors. In fact, depression affects about 5% of people over 65 as well as up to 13.5% of older adults who require home healthcare. While depression is a common problem, it’s not a normal side effect of growing older. Depression should not be something we simply endure as part of the aging process. If you’re experiencing depression, keep reading to find out how Medicare can help you cover your treatment and support your mental health in the long run.

Mental Health Services Covered by Original Medicare

Original Medicare—also called Medicare Parts A and B—covers a variety of mental health services. Medicare Part A covers the costs of mental health care for hospital inpatients, including therapy and medications administered in a hospital setting. When it comes to outpatient mental health services, Medicare Part B covers one depression screening every year. In addition, it covers psychiatric evaluations, diagnostic tests, medication management, family counseling, and therapy with licensed mental health professionals such as psychiatrists, psychologists, and social workers. However, seniors using these services should be aware of deductibles and copays. After you reach the deductible for Medicare Part B, you will have to pay 20% of the cost for each mental health service.

Unfortunately, Original Medicare alone does not cover prescription drugs or other essential services that can support your mental health treatment. This is why many seniors opt for a Medicare Advantage plan. Medicare Advantage plans offer all the same benefits included in Original Medicare, plus coverage for services like vision, dental, hearing and prescription drugs to help improve your quality of life.

Finding the Right Medicare Plan

There are over 3,700 Medicare Advantage plans available across the United States, so how are you supposed to choose one? Start by making a list of services that you need covered. For example, you may need prescription drug coverage if you’re prescribed medications to treat your depression. If you have vision or hearing problems, make sure your plan covers these services as well—taking care of your physical health is crucial to good mental health. Untreated hearing loss, for instance, can lead to cognitive impairment! Additionally, many Medicare Advantage plans have in-home support services which can significantly improve quality of life for people facing mobility limitations.

Medicare Advantage plans that provide access to wellness programs may also be a good choice for people with depression. Research from McMaster University a public research university in Hamilton, Ontario, Canada, shows that staying active plays an important role in treating and preventing depression. Additionally, any senior with Medicare can also take advantage of a free annual wellness visit. During this visit, seniors can discuss prevention strategies with their doctor and develop a personalized plan for avoiding mental illness in the future.

Ensure Your Mental Health Provider Accepts Medicare

Since many psychiatrists opt out of Medicare, you may have trouble finding a mental health professional that accepts your health coverage. Fortunately, U.S. News recommends a few steps patients can take to find the mental health care they need. Start by talking to your primary care provider about your mental health concerns. Your doctor may be able to prescribe medication for your condition and refer you to professionals who they know accept Medicare. If you enroll in a Medicare Advantage plan, ask for a list of covered providers. For seniors who live in rural communities, telepsychiatry is a superior option to forgoing mental health care altogether. This service may be covered by Medicare, depending on where you live.

Is Your Mental Health Service Recognized?

On the other hand, you also need to ensure that your Medicare plan recognizes the mental health services you intend to use. CMS (the Centers for Medicaid and Medicare) recognizes mental health care provided by clinical psychologists, clinical social workers, clinical nurse specialists, psychiatrists, physicians assistants, nurse practitioners, and general practitioners. Non-medical doctors—like social workers and psychologists—must be Medicare-certified. Also, ensure your mental health care provider accepts Medicare’s approved amount for the services they’re providing to you.

Along the same lines, make sure that your Medicare plan will cover your prescription drugs. If you opt to stick with Original Medicare, you can add a prescription drug plan with Medicare Part D. Alternatively, you can choose a Medicare Advantage plan that includes drug coverage—most plans do. Either way, be sure to choose a drug plan that covers your prescriptions. If you cannot find a plan that covers all of your medication, consider choosing a plan that covers your most expensive drugs. It’s also important to check that your plan covers the pharmacy that you would like to get your medications from.

Depression is a serious problem that can accelerate aging and exacerbate age-related physical issues. Fortunately, seniors have several avenues for treatment. And, thanks to Medicare, you don’t have to spend a fortune to receive treatment for depression or any other mental health problems. Don’t hesitate to seek the treatment you need now.

A: Battle Fatigue. Q: What Kind of Words Shouldn’t We Use About Illness?

I’m sure you’re as sad as I am, on hearing the news about Jeopardy’s Alex Trebek’s Stage IV pancreatic cancer diagnosis. Can we even imagine Jeopardy with someone else? Well, apparently, Alex can’t either because he’s vowed to “fight this” and “beat it,” and make good on the remaining three years of his contract.

But I’m sad too, at his reliance on the kind of terminology that seems to infect so much writing about serious illness. It’s a battle. No, it’s a war. You want to win it.

Here’s what comes from seeing illness through that lens: if your disease progresses, does that mean you’re not fighting hard enough? If you’re too tired or even grumpy to be positive and put your best foot forward, does that mean the disease is winning the battle? And if your family and friends are urging you on to keep fighting, does that mean you’re disappointing them and that it must be some character weakness in you, if you just don’t want to?

Illness can be unpredictable, wily and complicated. It is not necessarily amenable to your strength of will and your determination to overcome it. Instead, how about dedicating yourself to treatment, doing your best to eat, sleep and live as well as you can for as long as you can?

I would have liked to have heard that from Alex. I also think he has a great opportunity to teach his audience about the nature of serious illness, the shock to the system, the ups and downs, the complications, the satisfaction of good days. And how great would it be if he sent out another message, telling us about his advance directive, and why he made the choices he’s made?

So I wish nothing but successful treatment ahead for Alex, and at least another three years on that contract. But please, no more war metaphors!

Talking About….Life, Ageism, Death and Everything in Between

Had a wide-ranging conversation about how the media portrays (or doesn’t) elders, serious illness; how people misunderstand palliative and hospice care; and lots more on Barry Lynn’s “Culture Shocks” podcast.

You can listen to our half-hour conversation in the second half of the podcast.

My “Comfy” Awards for Media Excellence

Photo: Netflix

Welcome to the new year!

We are now in the midst of the 2019 film awards season, after the kickoff of the always amusing and entertaining Golden Globes. It reminds me that for some time, I’ve longed (in vain) for some kind of media awards event for accurate portrayals about late life. But to whom would those awards go? Alas, few recent films and TV programs might qualify.in late life, frailty, illness, death, loss and grieving don’t translate into blockbuster ticket sales.

But in the past year I’ve found a few standouts, mostly online, that deserve recognition. So in the spirit of the season, let’s call it the “Comfy Awards,” and I’m awarding “Comfys” to:

BoJack Horseman, “Free Churros,” Season 5, Episode 6, on Netflix

I should tell you that I feel that animated films and television programs can have more artistry, humanity and complex storytelling than many conventional live-action films. I’m a huge fan of the Toy Story films, Inside Out and most recently, the brilliant Isle of Dogs, for example. I’m also a huge fan of Bob’s Burgers on TV.

But right now BoJack Horseman is probably my favorite. This Netflix series chronicles the “Hollywoo” (that’s what Hollywood is called here) life of BoJack Horseman, a self-loathing and depressed former TV sitcom star, voiced by the actor Will Arnett. The premise of this world is that a dizzying variety of anthropomorphic creatures interact easily and regularly with human beings. BoJack’s agent, for example, is a cat, Princess Caroline, voiced by Amy Sedaris. The show is by turns hilarious, bitingly satiric, poignant and occasionally moving.

“Free Churros” is a stunning example of the latter. It consists of a 20-minute monologue by BoJack, who is delivering a eulogy to his mother. It is more of a stream-of-consciousness and it artfully suggests why BoJack is as self-involved, troubled and self-destructive as he is.

This is what struck me: Loss and grief are so much more complicated for those who have had strained or stormy relationships with their parents. There’s so much unfinished business. So much anger and resentment on top of the heartache of feeling a void that will never be filled. BoJack clearly had a fraught relationship with his mother (and an even more difficult relationship with his father). This episode beautifully captures all of pain and ambivalence about losing a parent in these circumstances. And still manages to end with a very clever joke.


“What Doctors Know About CPR,” Topic (online magazine)

I think it’s hard to prepare an advance directive if you don’t know precisely what some measures – like cardiopulmonary resuscitation (CPR) – really entail. Most of us have a general idea, probably from watching heroic and often extremely successful CPR episodes on our favorite medical TV shows. And using that as our guide, we might reasonably think, why not opt for that? There are plenty of reasons why not, in fact.

But it’s one thing to be told, or to read, about the risks and dangers of CPR; it’s quite another to see a graphic representation of what the process and its more often than not ill effects are. For that, we thank Dr. Nathan Gray, a palliative care physician at Duke University School of Medicine, who wrote and illustrated a graphic piece about the realities of CPR for Topic, an online magazine.

“CPR begins when a heart stops, the last domino to fall on the cascade toward death,” Dr. Gray writes. He illustrates a Code Blue being called, the mechanics and impersonality of the process and the statistics showing how few people actually survive intact.

“Until you witness it in person it can be hard to capture the inhumanity of our medical routine,” he writes. He urges the medical community to not let technology interfere with its humanity.

The piece is essential reading, and undoubtedly I will be using it in future talks about advance care planning.

Time Goes By blog, Ronni Bennett

Ronni Bennett has been writing her blog Time Goes By all about aging, for some time. But I didn’t discover it until several months ago when Kaiser Health News wrote a story about her.

Last fall, Bennett’s doctors told her that her pancreatic cancer had metastasized to her lungs and her peritoneum (which lines the cavity of the abdomen) and that there were treatment options but no cure for her condition. Now, if I’d been given this news, my first inclination would probably have been to hide under the covers in bed. Bennett’s inclination, though, was to write about it. And to keep writing, because for her that was a way of better understanding herself. Her hope was to approach the last chapter of her life “alert, aware and lucid,” she said.

“There’s very little about dying from the point of view of someone who’s living that experience,” she told Kaiser Health News. “This is one of the very big deals of aging and, absolutely, I’ll keep writing about this as long as I want to or can.”

Reading Bennett is, in fact, like having a great talk with a good friend. She is great company, amusing, touching and honest above all. About what she calls her terrors. About the ridiculous moments (she needs a new heater and thinks, Really? Now?) and the transcendent moments (a carefully guided psilocybin trip that she says has given her a greater sense about life and death). She has a large, avid readership and her honesty has made it possible for readers to share their stories, too. She also posts “The Alex and Ronni Show” — videos of her Skyped conversations with her ex-husband.

Most recently, she wrote: “However short or long my remaining days may be, it is a great gift I have received, knowing my death is near. It led to what I think is the most important question in the circumstance: what do you want to do with the time that remains?”

That’s a question we all need to think about. So, I’m awarding a “Comfy” to Ronni Bennett for the great service she is doing for all of us.

Do you have any suggestions for “Comfy” awards? I’d love to hear about them!

Yea or Nay on Medical Aid in Dying?

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/

A Virtual Walk in Others’ Shoes

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.