Tag Archives: wellness

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.

It’s Never Too Late to Get Creative

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.

 

It’s Healthcare Decisions Time! Focus on What You Want, Not on What You Don’t

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.

 

On the Radical Power of Conversations

 

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.

 

 

Making Sense of Those Health Studies

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!