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.
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!
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
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!
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/
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.
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 email@example.com 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.
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.