Is it possible to live emotionally well if you’re facing a serious illness? It may be counter-intuitive, but the answer is yes. Here’s my latest blog post for Sixty and Me on the subject.
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.
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?
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.
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
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.
Happy National Healthcare Decisions Day! Actually, it’s a whole week, starting April 16. The Day was created to remind all of us of the importance of having a conversation with our family and friends about what kind of care we’d want, if we couldn’t speak for ourselves; and of having a written advance care directive and a health care proxy to speak for us.
And, in honor of the week, my book, “Last Comforts: Notes from the Forefront of Late Life Care,” is now available in all e-book venues – Kindle, Nook, iBooks, Kobo and more — for the new low, low price of $5.99!
It’s a good week to think about your bucket list, too, which I wrote about in this Sixtyandme.com post.
Personally, I’ve never been a fan of the idea of coming up with a bucket list. At heart, and I’m sure I’m not alone in this, my clear preference is to focus on the less spectacular but just as satisfying smaller pleasures of daily life. And being grateful for the sometimes unexpected joys to be found there.
The photo accompanying this post is a good example of what I mean. I’m sure that seeing the Grand Canyon is probably atop lots of bucket lists. My husband and I were fortunate enough to be able to visit the South Rim a couple of years ago and of course, it was breathtaking. But here was my favorite moment (although the photo doesn’t do it justice). We had emerged from lunch around the same time as a heavy rain had stopped and there – so close you could practically reach out and touch it – was a rainbow. An unexpected, once-in-a-lifetime vision.
But my bucket list skepticism changed before I read about research conducted by the Stanford Letter Project at the Stanford University School of Medicine. As Dr. VJ Periyakoil, founder of the Stanford Letter Project, pointed out in a compelling opinion piece in The New York Times, it’s important not only to write down several things you’d like to accomplish, experience, see or share – and update your list from time to time as your feelings change – but also to share this with your physicians.
Why? Because they need to know what’s important to you if they are going to provide the best possible care for you, the individual.
If you’re having a problem identifying three to five main goals, Stanford has come up with a handy toolkit to help you. So share the list with your doctor. If you have a chronic illness, the toolkit advises, “Ask your doctor what you need to know about your health and illnesses and if they will prevent you from reaching your goals. Especially ask them about if any treatments they are proposing will prevent you from living your life as you wish to.”
Rethinking the bucket list question, I considered another reason why sharing your list with physicians is an excellent idea. The truth is, so much of thinking about advance care planning and preparing advance care directives has to do with what we don’t want. CPR, yes or no? Feeding tubes, yes or no? Mechanical ventilation, yes or no?
The bucket list, on the other hand, is a clear roadmap for our loved ones and physicians to understand what we do want. So it can be a lovely, positive complement to the admittedly sobering and potentially unpleasant work of envisioning our end-of-life care preferences.
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.
Are you drinking too much coffee? Not enough? And what about adult beverages? Too many drinks at a time? Not enough? Recently there have been a few health studies published — and widely publicized — that suggest that drinking more coffee, and drinking alcoholic beverages in moderation — can increase our longevity.
But before you go out to celebrate (though not in excess, of course), here’s food for thought, from my latest blog post on SixtyandMe.com, about how to interpret some of the (often contradictory) health studies we continue to read about.
Wishing everyone a wonderful and safe Labor Day Weekend!