Tag Archives: elder care

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

It’s Never Too Late to Get Creative

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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, hospice care, long-term care, nursing homes, palliative care, patient education, wellness

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

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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

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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, caregiving, death and dying, elder care, long-term care, nursing homes, patient education

Food, Glorious Food — Until It Isn’t Needed

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We’re in the midst of holiday season, and for many of us that means family events, gatherings with our friends and other celebrations. And of course it means lots of eating. An abundance of goodies that are sweet, savory and everything in between. That’s no surprise, considering that in our culture, food is one of our basic expressions of love. It’s one way we nurture each other and connect with each other. It’s comfort.  A chef I met last year summed it up so clearly. “All I ever wanted to do,” he said, “was to feed people and make them happy.”

For those who are nearing the ends of their lives, though, food not only becomes less and less of a pleasure but also less and less necessary. That’s a hard concept to wrap your head around and even harder to confront when you see this happening to someone you love. A person’s lack of appetite is a powerful and unwelcome symbol of decline, and a harbinger of the loss we will soon experience. If only Mom or Dad would eat, you might think, they could get some strength back, feel better and slow the progression of illness.

As a result, there is a giant misconception that the dying suffer terribly if they don’t eat or drink anything; that they will die of starvation or dehydration. Further, that people responsible for their care are cruel and inhumane if they do not feed the ill, or at least give them fluids. But when a person who is terminally ill stops eating, he or she cannot process food and fluids. Forcing the person to eat does not help that person to live longer, feel better, feel stronger, or be able to do more.

When a man I’d been visiting for a several weeks in a nursing home recently reached that point, his sister poignantly asked me, “Can’t we get them [the nursing home] to give him a feeding tube?” Of course she didn’t want to see her brother steadily becoming weaker and weaker. Of course she didn’t want to lose him. She believed that he would get some strength back if only he would eat more. But it wasn’t lack of nutrition that was causing his decline; it was the cancer.

Her brother’s advance care directive, in fact, called for no artificial nutrition. The fact is, at that point artificial nutrition and/or hydration makes people feel bloated, nauseated, and/or develop diarrhea. It does not relieve suffering. Here’s what the American Academy of Hospice and Palliative Medicine has to say: “For patients near the end of life, artificial nutrition and hydration is unlikely to prolong life and can potentially lead to medical complications and increase suffering.”

It’s better, the experts say, 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 light, soothing massage. Playing favorite music. Or just sitting quietly, holding hands, offering your presence and your love.

Addressing Nutrition in Advance Directives

It’s important to address the issue of nutrition in your advance care directive. It may not be enough just to say “yes” or “no” to artificial nutrition and hydration, though. Recently I came across a useful document about this, published by End of Life Washington. It addresses the issue of feeding-by-hand, which could be an issue in long-term care facilities caring for people with advanced illness and/or dementia. (And it certainly underscores the importance of documenting the advance care goals and preferences of people with dementia early in their diagnosis.) You can read the full document here.

At the heart of it, the document 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.”

This document does not replace your advance care directive, but it is a supplement to it. This organization also has a detailed general advance care directive as well as an advance care directive for those with Alzheimer’s or other forms of dementia available on its website. They’re worth a look.

In the meantime, I wish you a bountiful and joyful holiday season, filled with precious times with everyone you love.

 

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

“Meeting the Registrar”

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I recently came across this short poem on Twitter; it was written by a 99-year-old woman, a former nurse herself. I thought it was so wonderful that I’ve now used it several times to introduce my talks about late-life care and advance care planning. Since people have been requesting copies, I thought I’d share it here. What do you think?

Meeting the Registrar

As I would like to leave at ease

No intravenous feeding please

No pump imparting partial life

No last ditch using of the knife

When coma comes just let me slide

Unhindered to the other side

I want no plastic tubes to mar

My meeting with the registrar

 

Advance Care Planning, death and dying, elder care, Medical Crisis, palliative care

Scary Things: Ghouls, Goblins…& Life Support

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Happy Halloween, boys and ghouls! We’re surrounded by all things spooky and macabre right now, so it seems like a good time to ask: what scares you?

Truth be told, I found these creepy creatures shown here pretty scary when I saw them at the otherwise great Portland Art Museum in Oregon. Something about their fierceness and intent. But I’ll tell you what scares me more. It’s the idea of living-but-not-living; that is, having to rely on a ventilator, and artificial feeding, to keep me among the “living” if I’m otherwise close to dying. Like being in suspended animation.

It’s one thing to consider life-prolonging treatments in the abstract; even checking the boxes on an advance care directive or a POLST form can seem like an abstract exercise too. But  an outstanding article by Sara Manning Peskin, MD, recently brought home to me once again the grim specifics of these treatments and tore away anything abstract in considering them.

 Why is it so important to understand this on a gut level, rather than as a cerebral exercise? Over the past year, I’ve had the opportunity to speak to a number of groups about advance care planning.  What I’ve come to realize, though, is that for many people, it’s hard to think about what they might want, or not want, because they don’t understand the realities of what’s involved with various life-prolonging treatments. So I try to explain some of the highlights, with the important caveat that I’m not a doctor or an advanced practice nurse. Even so, I’m sure for many these are still abstract ideas.

That’s where Dr. Peskin’s article comes in. She writes about meeting a 56-year-old woman she calls Geraldine, and her family, in the hospital three  weeks after Geraldine had suffered a heart attack. Geraldine was on a breathing tube.

“We can place a long-term breathing tube in her neck and a feeding tube in her stomach,” she told the family, “but there are no cases in the medical literature of someone like her living independently again. The best we could hope for is a life of near-complete dependence.”

Her family decided that, because Geraldine was stubborn and exceptional in life – a fighter, they called her — they believed she would be exceptional in beating her prognosis too.

“For Geraldine’s family, the immediate fear of watching her die outweighed the unfamiliar pain of sustaining her on machines and watching her disappear in a long-term care facility,” Dr. Peskin writes. And so the breathing tube was placed in her neck, and the feeding tube in her stomach.

But, as Dr. Peskin explains, “immobility leads to complications: infection, blood clots and bedsores. Where tubes are inserted, bacteria can enter. Being immobile also put Geraldine at risk for pneumonia and urinary tract infections. “Like mosquitoes in standing water, infections proliferate when the body is still,” Dr. Peskin points out.

Blood clots resulted not only from immobility but also from Geraldine’s body having been inflamed and torn from the heart attack. Circulation slowed. “Pools of static blood dried into a thick paste in her blood vessels,” the doctor says.

A bedsore developed. As Dr. Peskin explains, if a bedsore progresses, first the skin becomes red, then its outer layer breaks down, then the inner layer does. Then, bone, muscles and tendons are exposed. This can happen in a matter of days.

But two months after the heart attack, Geraldine was stable enough to leave the hospital’s ICU and was transferred to a long-term care facility. She was in a persistent vegetative state, which means she did not respond to external stimuli.

The family still hoped that there would be a miraculous turnaround. But there wasn’t any miracle. Geraldine died of sepsis,  a life-threatening complication of an infection, after four months of care.

You can read the full article here:

A coda to the story: While Geraldine was still in the ICU, Dr. Peskin reports, another doctor asked if the family of another patient in that ICU could visit Geraldine to see what prolonged dying looked like. The family agreed; the visiting family subsequently chose hospice care for their loved one.

When you think about advance care planning, then, think about Geraldine. I think it’s also helpful to think not only about what you don’t want, but what you do want. It’s still an exercise, to be sure, because so often we truly do not control our end-of-life circumstances. But it’s good to have an ideal in mind.

(In case you’re wondering, those spooky creatures pictured here are Tupilak figures exhibited at the Portland Art Museum in Oregon. These were credited to an Inuit artist, circa 1960. In Greenlandic Inuit culture, these figures were made by shamans to be avenging monsters. They’d be placed into the sea to seek and destroy a specific enemy.)

Happy Halloween!

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

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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.

 

 

baby boomers, caregiving, dementia care, elder care, home care

There’s No Place Like Home

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trainingpic1-17

You may not know Sandi McCann’s name just yet. But my guess is that by the end of this year, many more of us will know her and the work she is doing. McCann’s aim is to create nothing less than a national movement – training direct care workers to be highly skilled, professional and respected caregivers for elders and paying them accordingly as they learn and going forward.

Here’s why this is at once heartening, important, and challenging:

As our population ages, the simple truth is that more of us are going to need help to enable us to remain in our own homes as so many of us would prefer to do. The Milken Institute School of Public Health at The George Washington University, for one,  estimates that by 2050, 27 million of us will need some form of long-term care, more than double the number in 2010.

That will require an army of  direct care workers – including certified nursing assistants,  home health aides and personal care aides – to help us with the basics of daily living. Not to mention the importance of keeping a watchful eye on us to note troubling changes in our mood, our physical well-being or our mental functioning. It can be difficult, physically taxing work that requires strength, patience and presence of mind in the face of unexpected events or crises.

And yet, ironically, providing direct care for our most vulnerable citizens requires the least amount of training, experiences the highest turnover rate – and pays the least — of the caring professions. As the Institute of Medicine (now known as NASEM Health)  first noted in a  2008 report on  “Retooling for an Aging America: Building the Healthcare Workforce,” your dog groomer requires more training than that. (And may be paid more, to boot.)

And the work is getting harder. Care has become more complex. Often people are discharged from the hospital or a post-acute rehab facility before they are able to fend for themselves well. The effects of a stroke or dementia can be pronounced and challenging. And unlike long-term care settings, there are no policies and procedures in place to guide caregivers facing challenging situations in the home.

Here’s where Sandi McCann comes in. Her own commitment and passion for elder care grew from her experience as a caregiver for her stepmother, afflicted with Lewy Body dementia at the end of her life. She left a career in corporate marketing and in 2012, she and her sister Maureen started HomeCare of the Rockies, a home care agency in Boulder, Colorado. “I love working with older adults,” McCann told me. “They need to know that they’re heard, loved and cared for. And they need the right kind of care support for that.”

The Idea: A Call to Action

As the agency grew, a serious workforce shortage hindered its ability to serve as many people as it could have.  Always supportive of the importance of training, as well as imparting the agency’s mission and values to its team of caregivers, McCann began to closely follow the work of Ai-Jen Poo of the National Domestic Workers Alliance and Caring Across Generations, and the “Fight for $15” movement. She started formulating her own idea for a call to action.

McCann started Caregiver Call to Serve,  a subsidiary of HomeCare of the Rockies. Its mission will be to create “a sustainable network of care to help older adults live meaningful lives, not just long ones.”

This year will be its pilot program, providing training to all of HomeCare’s 90-person team and acting as a sort of “incubator” during which the curriculum may be adjusted before it is introduced  nationally. HomeCare of the Rockies will own this program fully, and will offer it to other organizations and agencies, offering “train the trainer” meetings.

Key to this initiative is what McCann calls “the triad” – Learn, Earn and Care. The “learn” part of the program includes 100 hours of professional caregiving education, 40 hours of which is online. Forty percent of the curriculum addresses issues of Alzheimer’s disease and other dementias.

The “care” part of the initiative aims to uphold professional standards and the integrity of the caregiving tradition, McCann said.

The “earn” part is what sets this initiative apart.  People enrolled in learning will get income boosts four times: after 25 hours, 50 hours, 75 hours and 100 hours of training, to reach $15 per hour. McCann said that that is nearly 40 percent higher than prevailing wages in Boulder.

McCann aims to launch Caregiver Call to Serve in May. It will screen a short video telling its story at a theater in Boulder, to be followed by a Town Hall meeting, all of which will be livestreamed. It has been accepted into the U.S. Dept. of Labor’s ApprenticeshipUSA program – a network of 150,000 employers representing more than 1,000 occupations — and will be working with the Department of Labor and Employment in Colorado to recruit and train caregivers.

There are more than 12,000 home health agencies in the U.S. There are many quite good caregiver and home health aide training programs too and I’ll focus on a few in future blogs. Will Caregiver Call to Serve break through the pack and, indeed, start a movement? I’d love to see it happen, because it’s not a moment too soon.

 

 

 

Advance Care Planning, baby boomers, elder care, hospice volunteering, wellness

Telling the Story of Your Life

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I recently sat in on a terrific session at the 2016 Hospice Team Conference in NJ. about the importance of narrative in hospice care, presented by Jeremy Lees, LSW , chaplain and bereavement counselor at Holy Name Medical Center’s hospice, where I am a volunteer.

It started me thinking about how important it is that we write or record the story of our life — not only for our loved ones, but also for ourselves. To make sense of the arc of our life, our place in the world, our sense of purpose. And the best time to do this is when we’re healthy and vital!

Here’s my latest blog post from SixtyandMe, with some tips about how to get started.