Category Archives: elder care

Elder care. We are living longer, but as we age many of us will become frailer and we’ll need help with basic activities of daily living. That’s true whether we continue living independently, or move to assisted living or skilled nursing homes.

Scary Things: Ghouls, Goblins…& Life Support

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!

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!

 

 

 

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

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.

 

 

What the Health Care Debate Didn’t Debate

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If you were hoping that a 90-minute debate about the health care system would shed some light on what the Federal government could/should/shouldn’t address, going forward, you were in for serious disappointment.

On Feb. 7, CNN aired that debate between Sen. Bernie Sanders and Sen. Ted Cruz. It really wasn’t about health care, as much as it was about health insurance. More specifically, it rehashed many of the tired and largely superficial arguments — on both sides — that we’d heard about Obamacare during the 2016 campaign. The one issue Sens. Sanders and Cruz seemed to agree about was that drug costs are too high.

If you don’t want to watch the debate for yourself on demand, or read the full transcript (although I’d recommend it), I will sum it up for you: Sen. Sanders believes that health care is a right; that we pay more for health care in the U.S. than other countries and get far less; that drug company executives earn obscenely high salaries; and that there should be Medicare for all. Sen. Cruz believes that government should not be in control of our health care, that it should not get between us and our doctors; that we shouldn’t have rationing the way they do in Europe and Canada; that people should be able to buy health insurance across state lines; and that competition will solve our problems.

What they didn’t talk about were some of the fundamental reasons why our health care system is so stressed. Just a few in the realm of elder care: the cost of treatment and caring for people with multiple chronic conditions; the high cost (and reasons behind) hospital readmissions; the challenge of improving care for people in rural areas; the coming wave of aging baby boomers in need of care; the challenge of providing care for people with Alzheimer’s and other dementias; the high cost of surgeries and other treatments for the ill in their last two years of life; the cascade of issues for those in intensive care units (ICUs) through the end of life.

Nor did they discuss the possible consequences of doing away with some of the more promising demonstration projects by the Centers for Medicare and Medicaid Services (CMS)’ Innovation Center  – authorized by the Affordable Care Act – designed to improve the quality of health care (and containing costs). The two I’d keep an eye on: Independence at Home; and Care Choices.

The CNN  debate featured a number of real people from various parts of the country and  various walks of life, with pressing health care dilemmas and questions for the Senators. You may not be surprised to learn that neither Senator answered those questions directly, but rather treated them as jumping-off points to return to their main messages.

One particular exchange that was disheartening to me (and it was not the focus of a broader discussion, by any means), happened about one-third of the way into the debate. In his advocating against rationing and in favor of people “exercising free choice,” Sen. Cruz had this to say:

“We could cut costs here if we do like Europe and cut the number of MRIs, the number of mammograms. If we cut — you know, you look at the elderly in much of Europe. The elderly here, when the elderly face life-threatening diseases, they’re often treated in the intensive care unit. In Europe, they’re often put in palliative care, essentially doped up with some drugs, and said, ‘Well, now is your time to go.’”

(To which Sen. Sanders’ response, in total, was “Oh.”)

Let’s take Sen. Cruz’ colossal misunderstanding, or mischaracterizing, of what palliative care is all about. First, it is all about patient-centered care. That is, it’s about figuring out what’s important to a patient facing serious illness – in simple terms, what does a good day look like to that person? — and helping him or her achieve it. Second, it does that through symptom management, which means alleviating pain, be it physical, emotional or spiritual. Third, it does not interfere with curative treatment the patient might be receiving from other physicians. Fourth, it is appropriate for anyone, of any age, struggling with a serious illness, not necessarily one that is life-limiting.

But what about his statement about the intensive care unit? He seemed to be saying that this is a beneficial thing for the elderly facing life-threatening diseases. The reality is that for a frail elder at the close of life, an ICU stay can seem more like an assault than a medical miracle. (If our lawmakers doubt that, I’d advise that they watch the short documentary film Extremis.

We may not see much clarity about health care emanating from Washington any time soon. Now that we have a new head of Health and Human Services, will that hasten Obamacare being replaced? Will it be replaced or repaired this year or next year? In what form? Who knows? If this debate was any indication, it doesn’t seem likely that the quality of the discussion about it is going to be terribly enlightening.

 

There’s No Place Like Home

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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.

 

 

 

Telling the Story of Your Life

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.

 

6 Steps To Take for Better End-of-Life Care

I was honored recently to be asked by the Berkeley, California-based Greater Good Science Center to do an essay, based on my experiences as a hospice volunteer and reporting/researching my book. Here are the highlights:

* Educate yourself about the different key treatments for end-of-life care, so that you can make informed decisions.
* Start conversations with loved ones so that they are clear about your wishes for care.
* Understand the benefits of palliative care and hospice care and know when to ask for them.
* Learn how to communicate effectively with doctors and medical staff.
* Research nursing and assisted living facilities in your community, in case you need them.
* Advocate for better end-of-life care for everyone.

You can read the full essay here

A Necessary Look at the End of Life in an ICU

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They say a picture is worth a thousand words. But that phrase was probably invented before the advent of film and video. Recently I watched a remarkable 24-minute short film, “Extremis” (available now on Netflix) and I can tell you unequivocally that it is worth many, many thousands of words.

Set in the intensive care unit at Highland Hospital in Oakland, California, it is an unflinching view of dying. More precisely, it shows how the technology that can prolong our lives when we are desperately ill raises important questions about the difficulties in making decisions at the end of life, not only for the ill but also for those who love them and face the agony of impending loss.

It’s a relatively short film, but very powerful. I would liken its brevity to the short stories of Alice Munro, who can tell you more about the human condition in 25 pages than most novelists can. The film is the result of a fortuitous collaboration between Dr. Jessica Nutik Zitter, an ICU physician and palliative care specialist who’d thought about the potential impact of a film project ever since she had watched the 2012 documentary “The Waiting Room,” filmed at Highland Hospital; the film director Dan Krauss, who was not initially drawn to the subject of end-of-life issues but ultimately found the ICU to be a “truly fascinating world where science and faith intersect,” as he told Modern Healthcare;” and Highland Hospital. Filming took months. It won Best Short Documentary awards this year from the Tribeca and San Francisco International Film Festivals.

“Extremis” mainly follows the wrenching struggles of two families. We meet Donna, in the end stages of a form of muscular dystrophy and on a ventilator, her husband and daughter with her; and Selena, unresponsive after she had stopped breathing in the car on the way to the ER, now on a ventilator too after spending up to 26 minutes without oxygen. We meet her daughter and her brothers, too, each of whom has different beliefs about how to proceed. That these families allowed filmmakers to record them throughout their ordeals is truly remarkable – and a public service.

“We’re all gonna die…and it’s good to have a little bit of a say in how,” Dr. Zitter remarks at one point in the film. (Her upcoming book—Extreme Measures: Finding a Better Path to the End of Life— is due out in February.)

How do we express our own wishes? In the past several years, much has been written about the importance of signing an advance care directive; with it, if you face a medical crisis and cannot speak for yourself, the person you’ve chosen to speak for you would be guided by your wishes and values. And yet, only a small percentage of adults in the U.S. have actually done this.
That shouldn’t be surprising; how many of us really want to think long and hard about our own mortality? And how many of us can really envision what it might be like to live on thanks to the many mechanical inventions available to us?

Watch this film. You’ll have the clearest view I’ve seen of their reality. Moreover, you’ll see that in the absence of a directive, those closest to you will have the enormous and sometimes guilt-laden burden of making decisions for you, adding to the emotional turmoil that attends the end of life even in the best of circumstances. You’ll also see that decision-making can present moral and ethical dilemmas for the physicians treating you.

You can find advance directive forms for each state at Caring Connections, a program of the National Hospice and Palliative Care Organization, here.

Finding Quality Care for Serious Illness — Before a Medical Crisis Hits

IMG_1100 I’m excited and honored to tell you that this fall, I’m teaching a new two-session course called “Let’s Manage Late Life Well” at the Lois E. Marshall Institute for Learning in Retirement (ILR) at Bergen Community College in Paramus, NJ. The course will be offered on October 31 and November 7, from 10:30 a.m. to 12:00 p.m. You can register for this and other courses at the ILR starting on Monday, August 29.

Too often, caregivers and people struggling with serious illness face medical crises that leave them feeling confused, frightened and overwhelmed. The best way to prevent that feeling of being lost and powerless in the health care system is by becoming better educated before a medical crisis hits.

The course is designed to help people become better educated about what good quality care looks like; as well as how to communicate better with health care professionals; how to make better-informed decisions for themselves or their loved ones; and how to find the information we all need about the conditions that we are likely to face in late life.

“Let’s Manage Late-Life Well” is a “bonus” course, offered at no extra charge with ILR membership for the Fall 2016 and Spring 2017. ILR membership entitles you to four courses each semester, plus two additional “bonus” courses. Full membership fee for Fall 2016 and Spring 2017 is $215. Registration begins on August 29th for the Fall 2016 semester.

This course will cover:
• An overview of innovations in late-life care (including those in NJ).
• How to communicate better with our health care specialists.
• How to learn about the quality of care in hospitals and long-term care facilities.
• Better alternatives to conventional skilled nursing homes.
• Strategies and tips for those caring for loved ones with dementia.
• What you need to know about advance care directives vs. POLST (Physician Orders for Life Sustaining Treatment) forms.
• Dispelling the many myths about palliative and hospice care.
• Plus: Where to find help: useful resources and links for caregivers and for people contending with serious illness.