A Plea for Better End of Life Care

Dr. Atul Gawande, bestselling author of Being Mortal: Medicine and What Matters in the End.
Atul-Gawande
In order to provide better medical care to the seriously ill, physicians must ask patients about their goals of care and end of life wishes.

Gawande, a general surgeon at Brigham and Women’s Hospital in Boston, addressed hundreds of medical students and physicians at the University of Chicago Medical School… He asked that they listen to patients’ concerns and recognize that prolonging life may not always be the best medical option for the dying.

“We have failed to recognize in medicine and society that people have priorities besides just living longer, that they have aims and goals,” he said. “The most effective way to find peoples’ priorities is to ask. But we don’t ask.” In the hospital setting, the physician often speaks more than the patient, Gawande added.

Some terminally ill patients wish to remain mobile or mentally competent enough to walk their dog or eat at a favorite restaurant; others wish for enough time to say goodbye to loved ones.

“At the end of life, people want to still participate, have a role and make memories,” he said. Because aggressive, often unnecessary, treatments can stymie mobility and cognitive ability, Gawande recommends that doctors familiarize themselves with the benefits of hospice and palliative medicine.

We have failed to recognize in medicine and society that people have priorities besides just living longer, that they have aims and goals.

Gawande urged physicians and nurses to ask their patients if they truly understand the nature of their disease. Only with this understanding can a physician begin to provide guidance, he added. Patients and families would be more comfortable enrolling in earlier palliative treatments if they are told about the benefits soon after diagnosis.

Throughout his new book, Being Mortal, Gawande tackles the negative impacts of some relatively new life-prolonging treatments on the seriously ill.

“I never expected that among the most meaningful experiences I’d have as a doctor — and, really, as a human being — would come from helping others deal with what medicine cannot do as well as what it can,” he writes.

Unfortunately, many medical students avoid pursuing careers in geriatrics – care for the aged and ill – often due to the lower pay and the difficult, often emotional, nature of the work.

The Burden of Stigma

by Ken Clasper, individual living with Lewy Body Dementia
KenClasper
Stigma is a terrible thing, but it’s not something which is new,it has been around for many years.

We have seen stigma in many illnesses,like cancer in the 1950-60s. It has also been attached to Aids, and recently Ebola, yet much of it is caused by old stories and myths, which do not seem to go away; possibly because many people simply believe they are true.

I have been asked on many occasions whether dementia us contagious, something which has left me staggered. Some think you can catch it if someone who has dementia sneezes.

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But I believe much of this stems from the fact that it sometimes seems to run in families; but most of it seems to come from the fact that some forms are called disease, like Lewy Body Dementia, which in some cases is called Lewy Body Disease; just one case in many.

Some charities sometimes call themselves “Alzheimer’s Disease” or “Dementia Disease”, and this also helps keep the stigma going. I suppose this is because professionals cannot decide what to call illnesses; or people call things by different terms and names.But I feel that much of this could be stopped if everyone was educated properly about this illness, rather than picking up odd pieces and trying to find the truth their own way

To educate everyone we should be starting with school children, who are already learning about someone in their families who has the illness. Many of these children want to learn more about what is happening to granny or grand dad, and it’s now time to start helping them understand just what is going on. These are the people who will shape the future in stopping this stigma, and therefore we must help them to help us.

Years ago parents kept their children out of the way, when someone had dementia, but now things have changed for the best, and it would be much better without the stigma. I have also heard stories of people crossing the road, so they did not come into contact with someone who had dementia in their families. This usually happened in very close communities like small villages.

So it’s time to find a way of getting into all schools, to teach all children that stigma, is not a nice thing, no matter which illness it’s attached to. Teachers should allow people with illnesses into schools to help educate those who are our future support.

The Government says that they are dementia friendly, so it’s time they factored this into education. It does not need to be an examination study, just allow us in during free time to speak to children and explain our problems and the stigma which is attached to it.

Let us hope that sometime soon things will change and change for the best. Let us all work to remove all stigma once and for all

Her Name Is Rose

the rose
The first day of school our professor introduced himself and challenged us to get to know someone we didn’t already know. I stood up to look around when a gentle hand touched my shoulder. I turned around to find a wrinkled, little old lady beaming up at me with a smile that lit up her entire being.

She said, ‘Hi handsome. My name is Rose. I’m eighty-seven years old. Can I give you a hug?’

I laughed and enthusiastically responded, ‘Of course you may!’ and she gave me a giant squeeze.

‘Why are you in college at such a young, innocent age?’ I asked.

She jokingly replied, ‘I’m here to meet a rich husband, get married, and have a couple of kids…’

‘No seriously,’ I asked. I was curious what may have motivated her to be taking on this challenge at her age.

‘I always dreamed of having a college education and now I’m getting one!’ she told me.

After class we walked to the student union building and shared a chocolate milkshake. We became instant friends. Every day for the next three months we would leave class together and talk nonstop. I was always mesmerized listening to this ‘time machine’ as she shared her wisdom and experience with me…

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Over the course of the year, Rose became a campus icon and she easily made friends wherever she went. She loved to dress up and she reveled in the attention bestowed upon her from the other students. She was living it up.

At the end of the semester we invited Rose to speak at our football banquet. I’ll never forget what she taught us. She was introduced and stepped up to the podium. As she began to deliver her prepared speech, she dropped her three by five cards on the floor. 
Frustrated and a little embarrassed she leaned into the microphone and simply said, ‘I’m sorry I’m so jittery. I gave up beer for Lent and this whiskey is killing me! I’ll never get my speech back in order so let me just tell you what I know.’

As we laughed she cleared her throat and began, ‘ we do not stop playing because we are old; we grow old because we stop playing. There are only four secrets to staying young, being happy, and achieving success. You have to laugh and find humor every day. You’ve got to have a dream. When you lose your dreams, you die. We have so many people walking around who are dead and don’t even know it! There is a huge difference between growing older and growing up.

If you are nineteen years old and lie in bed for one full year and don’t do one productive thing, you will turn twenty years old. If I am eighty-seven years old and stay in bed for a year and never do anything I will turn eighty-eight. Anybody! Can grow older. That doesn’t take any talent or ability. The idea is to grow up by always finding opportunity in change. Have no regrets. The elderly usually don’t have regrets for what we did, but rather for things we did not do. The only people who fear death are those with regrets.’

She concluded her speech by courageously singing ‘The Rose..’ She challenged each of us to study the lyrics and live them out in our daily lives. At the year’s end Rose finished the college degree she had begun all those years ago.

One week after graduation Rose died peacefully in her sleep. Over two thousand college students attended her funeral in tribute to the wonderful woman who taught by example that it’s never too late to be all you can possibly be.

REMEMBER, GROWING OLDER IS MANDATORY. GROWING UP IS OPTIONAL. We make a Living by what we get. We make a Life by what we give.

Alzheimer’s Claims One Half of Click & Clack

Click & ClackOn Monday, November 3rd, Tom Magliozzi, one half of Car Talk’s Click and Clack, succumbed to complications due to Alzheimer’s. Tom and his brother Ray were experts in soul-cleansing, captivating humor. In honor of what they have brought us for over 35 years, we dedicate this “Featured Expert” space to the joy they brought.  Click on their photo and enjoy.

Staying One Step Ahead of the Mortician

Martin Bayneby: Martin Bayne a journalist, Buddhist monk, MIT graduate, and well-known advocate for the aging. In the nineties, at the peak of his professional career and personal eldercare advocacy, Bayne was diagnosed with Parkinson’s Disease. For the past ten years he has lived in an assisted living facility.

Prior to my diagnosis of Young Onset Parkinson’s Disease in 1994, just before my 44th birthday, the concepts of morbidity and mortality were statistical anomalies; ignored, for the most part, like unwanted relatives. That would change, however, in ways I could not fathom.

Three weeks ago I was taken by ambulance from the Assisted Living Facility (ALF) I now call home, to an acute care hospital ER where I presented with a 103o fever, delirium and difficulty breathing. After eight hours of poking, prodding, blood work and X-rays, I was diagnosed with pneumonia and exacerbation of congestive heart failure. I waited for a bed on an ICU step-down unit to open, and three hours later was admitted to the sixth-floor unit, where a broad-spectrum antibiotic (the first of sixteen IVs) was started in my left antecubital vein.

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A week later and pneumonia-free, I was transferred to a Skilled Nursing Facility for rehab – a move mandated by my ALF. Finally, after two weeks of physical and occupational therapy, I returned home yesterday, closing the circle, and once again cheating the Grim Reaper.

After twelve years of life in an ALF, I’d like to report that going toe-to-toe with death has become just another fact of life. But it hasn’t. In fact, the older I get (now 64), the more I dig in with all the tenacity I can muster to stave off what I know is natural and inevitable.

Americans rarely talk openly about death — the hospice movement is trying to change that, but the chronology of genuine change is more likely to be measured in generations than years.

According to The National Hospice and Palliative Care Organization (NHPCO), the name “hospice” was first applied to specialized care for dying patients by physician Dame Cicely Saunders, who began her work with the terminally ill in 1948 and eventually went on to create the first modern hospice—St. Christopher’s Hospice—in a residential suburb of London. Considered the model for quality compassionate care for people facing a life-limiting illness, hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s loved ones as well.

I’ve witnessed a significant number of my fellow residents — in three ALFs, over a twelve year period — drop their bodies and move on. Some transitioned quickly, with no fanfare or goodbyes; often in their sleep, while still others appeared to slowly enter a deep and silent hibernation.

When possible, and the family deemed it appropriate, I would spend time with the dying resident, often holding their hand and reading from an inspirational book or web page (http://DynamicKindess.com) Other times I would merely sit quietly next to their bed, in meditation – never a “pity party,” just a proper Bon Voyage from a fellow human being.Holding Hands 300×195 Staying One Step Ahead of the Mortician

I was particularly moved by “Charles,” a man in his mid-nineties who sat by himself in the dining room, conversed with none of the other residents, and always wore the same faded-grey trousers and blue cardigan sweater. One day I walked over to his table after lunch and extended my hand. He starred at me for what seemed like an eternity. Then, slowly and cautiously he raised his hand to meet mine. When our hands touched, I was moved beyond words, and I watched as a smile spread across his face. After that day, at the end of every meal, I would make my way across the dining room to shake his hand. Neither spoke; but volumes could have been written about the change in each of our lives.

The grey trousers and cardigan sweater? He threw them away and began to wear colorful outfits – and one day walked into breakfast with a muted pink shirt and dark pink sweater. Something inside me said it was his last day on earth, and after his meal was finished, he broke tradition and walked over to my table, taking my hand in his. Tears were already streaming down my cheeks. “Don’t worry,” he said, a smile playing at the corners of his mouth. “Everything will be all right.” That night, Charles died, taking a part of me with him.

Will I have the grace and courage to look death in the eye and smile when it’s my time to pass?

Hard to say. But in the interim, there are hands to shake and lives to touch.

In the End, It Is About Life

Salwitz 2by James Salwitz, MD, Oncologist: He has  been listed as a Top Doctor in U.S. News & World Report and Top Doctors: New York Metro Area.

The Institute of Medicine of the National Academies has released their long anticipated 500-page report, titled Dying in America – Improving Quality and Honoring Individual Preferences near the End of Life. This is a critical addition to the ongoing conversation about health care in the United States and makes observations and conclusions, which we need to consider and understand. They conclude, as has been said before, that we waste precious resource’s as we fail to give good end-of-life care, millions suffer needlessly, and that we can and must do much better; it is time we opened ourselves to the conversation and our obligation to one another.

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The report is a remarkable achievement which, like other IOM reports, will be sited during debates, research and planning. They note that with the aging of our population our reluctance to address final planning is a crisis, which affects in disproportionate numbers, not only the elderly, but also any group receiving marginal healthcare. Paradoxically, in the most technologically advanced medical centers, the futile focus on treatment in terminal situations not only wastes dollars it wastes life and causes suffering. As the result of “knowledge gaps, structural problems and financial disincentives,” our poor and painful approach to end-of-life care is perhaps the most perverse result of our fragmented health system.

IOM emphasizes education in end-of-life choices and planning, perhaps starting with organ donation on teenage driver licenses, and continuing through all healthcare contact during a person’s life. Patients and families need to be engaged and educated to discuss and plan long before they are consumed actually fighting disease or making wrenching last minute decisions. To this end, American citizens, doctors and all health care providers need to learn the alternatives, treatment possibilities and confront the challenging topic of dying. While the IOM was encouraged by the expansion of the medical specialty of Palliative Care, they note that there will always be too many people near the end of their lives to be cared for by just a few specialists, rather there is the need for all doctors who serve patients with life threatening disease to be skilled in giving quality end-of-life counseling and care.

The report focus on “person-centered, family oriented End-of-Life Care” is to be applauded. Nonetheless, there will be those that will interpret the emphasis on “compassionate, affordable, sustainable” treatment as suggesting that the hidden agenda is to save dollars at the expense of lives. Such an analysis would corrupt the truth and miss the critical goal of empowering each individual to make decisions regarding how they wish to live their lives and what quality means to each of us. This is a matter of personal freedom; the opportunity and right to live, at every moment of life, as we desire, and to decide what medical care is right for each. Ignorance and confusion about realities and limits, especially in those with terminal disease, combined with a national discomfort about discussing death, results in many Americans losing the opportunity to make vital personal choices.

The present reality is that excessive, invasive medical treatment is often given without patients and families having the educated possibility of living their final days, weeks or months in comfort, at home, with dignity, held by the ones they love, while other patients languish without any care, in pain, alone in the cold and dark.

The end-of-life is not about being dead. It is a precious, irreplaceable, part of life. Our goal, our obligation, as a society and as individuals, must be to find peace, quality and love until our very end.

Perhaps, then, the title of this report should be: Honoring Life in America.

Living with Dementia: “We Shall Overcome…

discriminate-1024x682by: Laura Beck – developer of Eden at Home. Today, as Learning and Development Guide, she coordinates management of the Eden Alternative brand and packaging of the organization’s message in promotional and educational content. Laura also supports design of new and existing Eden Alternative curricula and educational products, coordinates and facilitates the Eden Alternative’s webinar-based education, and serves as a public speaker and an educator of designated educational offerings.

I’m always struck by ageist remarks that bundle aging and living with dementia as sort of a package deal. It came up again recently in a discussion with a friend who argued that people living with dementia were victims of ageism. Hmmmm… perhaps… if the individual in question is indeed being marginalized due to his or her age alone.

Here’s the rub. Living with dementia is about changing abilities, not necessarily growing older. You can be a younger adult and still live with dementia. It’s true that, statistically speaking, a large number of people living with dementia are older people. But to compartmentalize the experience of dementia as an aging issue alone is a very bad habit on the part of society.

To really shift this paradigm, the world of aging services must clasp hands tightly with those who support the well-being of people who live with differing abilities. This meeting of the minds is crucial when it comes to creating well-informed, respectful, and supportive communities that integrate the needs and contributions of those living with dementia.

At a recent national summit hosted by the Dementia Action Alliance, Val Halamandaris, head of the National Association of Home Care and Hospice, described living with dementia as a civil rights issue. I could not agree more. The American Disabilities Act helped wake us up to the need for universal design, accommodation, and a serious shift in public awareness. We still have a ways to go there, folks, and even further, regarding the ability of those who live with dementia to be active, contributing members of their communities.

I am inspired by the efforts of some towns and cities to become dementia-friendly communities. These initiatives include comprehensive plans to create easy-to-navigate environments and accessible travel options; respectful and responsive businesses; opportunities for community engagement; and education designed to deconstruct stigma, build awareness, and highlight contribution potential. Through their actions, communities like these are saying, “Yes, we welcome the unique gifts that individuals living with dementia have to offer us. Yes, we believe that every person is vital to creating a rich and diverse community. Yes, we see you.”

Here’s to the power of possibility. Just say, “Yes.”

In Pursuit of the Tipping Point

by: Laura Beck – developer of Eden at Home. Today, as Learning and Development Guide, she coordinates management of the Eden Alternative brand and packaging of the organization’s message in promotional and educational content. Laura also supports design of new and existing Eden Alternative curricula and educational products, coordinates and facilitates the Eden Alternative’s webinar-based education, and serves as a public speaker and an educator of designated educational offerings.
laura-beckLast week, someone asked me to clarify some things about our Dementia Beyond Drugs training that made me realize that there are still some misconceptions floating around out there regarding the vision behind it. I’d like to share some of my thoughts on this, while noting that Dr. Al Power, the award-winning author of the book by the same name, may have a few of his own. Continue reading

For some folks, the expression “dementia beyond drugs” is perceived as an all or nothing proposition. What the training really emphasizes is how to move beyond merely reacting to so-called “behaviors” and, instead, learn to identify and respond to the unmet needs that are likely their underlying cause. Gone unchecked, unmet needs lead to distress and subsequent medication use for those who live with dementia. Ultimately, then, the goal is to tackle the cause, not just treat the symptom.

Does this mean that all drugs are bad when it comes to supporting the needs of those who live with dementia? As the daughter of two parents who lived with two different forms of dementia, I can clearly say “no.” In both cases (Alzheimer’s disease with Dad, and Lewy Body dementia with Mom), optimization (not maximization) of pharmaceutical support was key to achieving balance.

Yet, we’ve all heard stories (and Dr. Power shares some eye-popping ones in his book) of lives compromised needlessly by a slew of unnecessary medications. Fortunately, this reality is becoming more of a mainstream, regulatory concern. CMS’ National Partnership to Improve Dementia Care in Nursing Homes, for example, has advocated for reducing the prescription of antipsychotic medications, limiting use to only those cases that involve “a valid, clinical indication and a systematic process to evaluate each individual’s need.”

Specialized training, like Dementia Beyond Drugs, is really the only way to reach the tipping point needed to effectively reduce the use of antipsychotic medications by those who live with dementia. Employee care partners require education that demonstrates practice-based, individualized approaches focused on improving overall well-being and facilitating growth and meaningful engagement. Dr. Power’s “Experiential Model” reminds us that when communication, as most of us know it, isn’t possible, the human spirit finds a way to make its needs known.

Our job, as fellow human beings, is to heed this call… to reject any recourse that attempts to silence it pharmaceutically and make every effort to eek out the message behind challenging reactions or “behaviors.” Doing so honors our common need to fulfill our sense of identity, security, connectedness, and autonomy, as well as our need to experience meaning, joy, and never-ending growth… whoever we may be.