Category Archives: wellness

Advance Care Planning, baby boomers, caregiving, death and dying, dementia care, elder care, long-term care, patient education, wellness

Why It Matters to Talk About Values with Dementia Patients

Leave a comment

As relieved as we are about finally seeing the awful year 2020 in the rearview mirror, I’d say that one useful thing the pandemic has given us is an in-your-face awareness of mortality and the gravity of serious illness. And it’s given us permission to talk about it more freely.

But what about loved ones who may be newly diagnosed with dementia? As caregivers know only too well, dementia progresses to the point where ultimately those afflicted may not be able to think clearly, reason well or speak. They become increasingly dependent on others for their care. So, to honor these loved ones, to support them in the way they’d want to care for themselves and to make sure that medical professionals understand the best way to respect what matters to them, it is vital to ask the questions regarding future care when loved ones are still able to articulate their answers.

How do you even begin to discuss these life-and-death issues? Especially if loved ones are anxious about their health and their future, or resistant to the idea that anything is wrong at all? Before trying to talk about the pros and cons of specifics of what I’d call “the Big Three” — CPR, mechanical ventilation and feeding tubes – it’s important to talk about values first. One great source of advice for this is the <a href="http://(https://theconversationproject.org/wp-content/uploads/2017/02/ConversationProject-StarterKit-Alzheimers-English.pdf) which offers a “starter kit” for those caring for people with dementia, at various stages.

The starter kit stresses the importance of beginning with exploring what matters to loved ones, what they fear, what kind of setting they envision if they were at the end of life, how involved they want to be in their medical care and who they’d like to have around them. It also emphasizes the importance of keeping the talk simple. Its questions are clear and straightforward. Finally, it stresses how important it is that you convey that this process is an act of love and that you will be there to support your loved one, no matter what.

Understanding loved ones’ values provides the framework for future decisions as dementia progresses. Advance directives, and health care proxies (those who will be responsible for speaking for loved ones) should reflect these values.

Some Points to Consider About Artificial Nutrition

Of the “Big Three,” let’s focus here just on artificial nutrition (feeding tubes): Sadly, people in the final stages of dementia may not remember how to eat, or be able to chew and swallow. Artificial nutrition is one solution to this issue, but it is not without its own problems According to the American Academy of Hospice and Palliative Medicine, for patients near the end of life, artificial nutrition and hydration is unlikely to prolong life and can potentially lead to medical complications and increased suffering. How? For starters, it makes people feel bloated, nauseated, and/or develop diarrhea.

Experts say it’s better to offer a little food or something to drink, and if your loved one wants it, even a minimal amount, fine. If not, don’t force it. There are other ways to continue to nourish your loved one, if food and fluids are no longer an option.

A useful template of an advance directive for people with dementia, published by End of Life Washington, addresses the feeding-by-hand issue. It states, “If I accept food and drink (comfort feeding) when they’re offered to me, I want them. I request that oral food and fluids be stopped if, because of dementia, any of the following conditions occur:

• I appear to be indifferent to being fed.
• I no longer appear to desire to eat or drink.
• I do not willingly open my mouth
• I turn my head away or try to avoid being fed or given fluids in any other way.
• I spit out food or fluids.
• I begin a pattern of coughing, gagging or choking on or aspirating (inhaling) food or fluids.
• The negative medical consequences of symptoms of continued feeding and drinking, as determined by a qualified medical provider, outweigh the benefits.”

No doubt this is all a lot of food for thought (pardon the pun) for caregivers and loved ones alike. But it’s the hard work of discussing and documenting loved ones’ values and wishes that will be the foundation for the compassionate and appropriate care that loved ones deserve later on in the course of illness.

Wishing everyone a safe, healthy and happy 2021.

baby boomers, Book Reviews and News, elder care, Mental health, patient education, Uncategorized, wellness

Looking Ahead with Resilience & Purpose

1 Comment

Having recently celebrated a birthday — not a “big” one, but big enough, thanks — I felt in need of a little inspiration. And found it in a documentary on DVD called “Lives Well Lived.” The filmmaker interviewed some 40 people, in their 70s through 100, about their lives, about what gives their lives meaning, and what advice they might have for younger people.

Besides being a great antidote to the often-stereotypical portrayals of older adults in the media, it’s also an excellent history lesson from a variety of vantage points. Lots of food for thought, for all generations.

I wrote about it for SixtyandMe.com. Here’s the link.

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

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

1 Comment

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.

baby boomers, Depression, elder care, Mental health, patient education, wellness

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

1 Comment

(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.

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

A Virtual Walk in Others’ Shoes

1 Comment

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.

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

It’s Never Too Late to Get Creative

Leave a comment
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.

 

Advance Care Planning, baby boomers, Book Reviews and News, death and dying, elder care, long-term care, Medical Crisis, patient education, wellness

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

1 Comment

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.

 

Advance Care Planning, baby boomers, Book Reviews and News, death and dying, elder care, hospice care, long-term care, nursing homes, palliative care, patient education, wellness

An Early Valentine’s Day Gift! A Free Book!

Leave a comment

Here’s my early Valentine’s Day gift to you! It’s a chance to win a FREE Kindle version of my book, “Last Comforts: Notes from the Forefront of Late Life Care.”

Enter before Feb. 14 and you could be among the 20 winners of this award-winning book about educating ourselves and our loved ones about the best possible care in our later years, to avoid medical crises down the road. It’s a book with a lot of heart and a lot of practical guidance, too!

The giveaway will only last from Feb. 1 to Feb. 14, so enter now. And if you already have the book, be sure to tell your friends!

Here’s the link: https://www.goodreads.com/giveaway/show/276947-last-comforts-notes-from-the-forefront-of-late-life-care

 

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

On the Radical Power of Conversations

1 Comment

 

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

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

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

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

A few nuggets from the book:

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

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

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

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

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

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

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

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

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

Useful Communication Tools

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

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

I want to talk about…

It is important to me because…

It might help you to know…

I want this conversation to lead to…

I’m nervous this conversation will lead to…

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

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

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

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

Where do you find the most joy in your life?

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

 

 

Advance Care Planning, baby boomers, caregiving, death and dying, elder care, long-term care, wellness

Hard to Start That Conversation? Try Playing a Game of 32 Questions

Leave a comment

You may be asking yourself, “Well, National Healthcare Decisions Day is coming up April 16, so what should I do to celebrate it?”

Okay, maybe you’re not asking yourself that question. Then again, maybe you don’t have to wait another couple of weeks to start having conversations with those closest to you about some serious subjects. Subjects like, what kind of care would be best for me if Ihad a serious illness? How do I feel about treatments and interventions like mechanical ventilation, feeding tubes and CPR?

It’s tough to start these conversations, of course, which is one reason why the majority of adults don’t do it. Or prepare advance care directives. But a Philadelphia-based company called Common Practice has come up with a way to help you with this, that’s clever, effective and fun. It’s a game you can play with two to five  players, called “Hello,” and it’s available on the company’s website for $24.95. And, no, I don’t have any connection or interest in this company.

I  had a chance to speak with Nick Jehlen, a founding partner of the company and lead designer of the game. What piqued my interest was this: underpinning what could be seen on first blush as a lighthearted approach to a weighty subject was in fact the result of a thoughtful and deliberative process of research, design and feedback.

Here’s how the game works. Each player gets a question booklet  with 32 questions (which you keep after you finish playing), and a number of “thank you” chips to give to other players if they say something you find particularly touching, helpful or insightful. You decide how to play: whether to limit the number of questions, or put a time limit on play. There are no wrong answers and really, no winners or losers. As the game designers point out, the most important rule is to listen.

Some sample questions:

In order to provide you with the best care possible, what three nonmedical facts should your doctor know about you?

Who haven’t you talked to in more than six months that you would want to before you died?

            If you needed help going to the bathroom today, who is the first person you’d ask to help you? Who would you never be able to ask?

            What music do you want to be listening to on your last day alive?

            What activities make you lose track of time?

            Write your own epitaph in five words or less.

One of the keys to the game’s effectiveness is that everyone has to answer the questions, so there’s a sense of sharing and no one (such as a person confronting a serious and/or life-limiting illness) is being “singled out” in the conversation.

“We wanted to create a sense of safety,” Jehlen said, noting that he has played the game “hundreds of times and my answers change. [The game] doesn’t force you into a corner. You can play it every year and see how you evolve.” He’s played it with his own parents, too, and said that they found it to be maybe a bit strange at first, but challenging and fun.

How the Game Evolved

Prior to developing the game, Common Practice’s business had revolved around designing tools to help people to communicate better in order to achieve greater workplace productivity and purpose.  When the founders started thinking about what ultimately became “Hello,” they spoke at length with hospice nurses, to learn more about what helps people to be resilient. One insight: families who had actually talked about death and dying were able to care for loved ones better than those who hadn’t.

They entered their game, then known as “My Gift of Grace,” in a design challenge run by the California Healthcare Coalition and were one of the winners. When they realized what an important project it was, and that it was the most meaningful work they had done, they decided to make it the focus of their business, Jehlen told me.

They did a Kickstarter campaign to raise money, and 440 people contributed. In devising the questions that would be part of the game, they queried their contributors for suggestions and reactions to sample questions. They were most interested in questions that generated more than a paragraph to answer. In the end, half of the questions in the game were devised by Common Practice; the other half came from backers.

About a year ago, they changed the name to “Hello,” because some of the feedback was that the name had religious overtones which made some feel left out.

Common Practice also makes “event kits” of the game available to groups of 25 to 50 people in health care settings, including hospitals and hospice agencies. It runs training and workshops for health care staff, aiming to encourage participants to feel more comfortable asking questions of their patients that are more, well, patient-centered.

How effective is this game? One measure: Research conducted at Penn State’s College of Medicine has shown that roughly three-quarters of the number of people who play the game subsequently go on to take some kind of advance care planning action, including creating an advance care directive.

Or, consider the response by health care professionals. After Nick Jehlen made a presentation about the game at the Mayo Clinic’s Transform conference in 2015, he invited attendees to play the game later on that afternoon. 150 people took him up on that offer.