Nearly 500,000 individuals are diagnosed with dementia every year. Year after year. As stunning as that figure is, it does not take into account the family members and caregivers who are subsequently affected by each diagnosis. When they are included, the numbers rise to an even more incredible level.
What this means in our society is a rapidly ballooning population of people faced with painful scenarios and the need to make vital end-of-life decisions for those who no longer can—a role for which most are largely unprepared. Sadness, confusion, guilt, anger, and physical and mental exhaustion become the norm for these families as the disease enters its final stage. The toughest decisions I ever made were about the life and death of my mother, who had lost her voice in decisions to dementia. But, I was one of the lucky ones: My 30 years as a doctor specializing in the care of older people and end-of-life care had prepared me to face these decisions. Yet, even with that advantage, I struggled. And my siblings struggled. The challenges that dementia and end-of-life decisions present can be – and usually are – overwhelming. When I looked for a resource to help my siblings, I found none. My personal experience compelled me to fuse my clinical knowledge, with everything I learned helping to care for my mother, into a book to help others. My family’s experiences guided me in what the book should include. As I reflected, I also realized the growth, hope, lessons, and transformation that occurred during living with a beautiful woman with dementia. While the sometimes-overwhelming nature of caregiving sent me to the bookstore looking for a guide, when writing the guide, I wanted to acknowledge the experience, strength, hope, and love that also accompanied the journey.
This book is laid out as a guidebook. Each chapter includes stories of families I’ve met and worked with during the last 30 years. These stories are meant to illustrate a common issue, concern or situation that occurs in late-stage dementia, and I hope that by seeing how others have met these challenges, others will see a way forward. This guidebook deals with the emotional aspects of being a surrogate decision-maker, communication with others at a challenging time of life, and the all-encompassing grief experienced in the process. Additionally, it provides information on dementia, its progression and the potential change in goals of care that occur as the disease moves from a chronic to a terminal stage. Finally, the book provides a view of the joy and fulfillment that can accompany assisting in the dignified death of someone you care for.
Anne Kenny, MD, author of Making Tough Decisions about End-of-Life Care in Dementia, published in 2018 by Johns Hopkins University Press, is a Professor of Medicine with specialty training and board certification in Geriatric Medicine, and Palliative and Hospice Care. She has been a practicing physician for over 30 years and has been recognized by her peers as a “Top Doc” in Geriatric Medicine. She has been honored with a Brookdale National Fellow and the prestigious Paul Beeson Physician Faculty Scholar awards. Dr. Kenny has worked clinically as a geriatrician in nursing homes, assisted living, rehabilitation, and clinical outpatient settings. Dr. Kenny has found joy in her work with individuals and their families managing issues related to the diagnosis of dementia. Her experience in partnering in the care of these families touched close to home when her own mother was diagnosed with dementia. Dr. Kenny joined with her mother and her brothers and sister to provide the best care for her mother during the early and middle years following her mother’s diagnosis. Her expertise, coupled with her mother’s playful spirit and her sibling’s openness, support, intelligence, and compassion, allowed for the highest functioning and independence of her mother for several years. Dr. Kenny’s expertise and experience in inpatient and outpatient Palliative and Hospice care were called on when her mother reached the final stages of living with dementia. The Kenny family worked together for their mother’s graceful exit from this planet.
In addition to her clinical practice, Dr. Kenny lectures to both healthcare professionals and the public on aging-related issues including navigating dementia, exercise, nutrition, hormone therapy, death and dying, and frailty. She is an educator of medicine and research skills. She has over 100 scientific publications and presentations focused on improving the care and functioning of older adults.
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Ending life on your terms | Opinion | The Seattle Times. by syndicated columnist, Froma Harrop.
Being prepared, well in advance of needing to be, will serve you well.
All our lives, we set out on new adventures having prepared for them to the best of our abilities:
- First day of school;
- The start of a new job;
- Preparing for a first date;
- Wedding preparations;
- Organizing a Holiday meal;
- Even something as mundane as putting together a grocery shopping list.
We know how to be at our best, and being at our best means painstakingly and carefully preparing for important events in our life. You didn’t personally have the option of preparing for your birth, but you do have the option, right now, to prepare for your death.
What does it mean to end our life on our own terms? This doesn’t have to be a controversial topic. I’m not talking about assisted suicide/right to die matters. What I am talking about, however, is the importance of each of us to spell out in painstakingly and carefully prepared language, all that you want done – or not done – when you are determined to have an irreversible fatal disease.
Death is such a taboo subject.
Why is that? None of us will avoid the inevitable, but many of us avoid laying down our wishes regarding that final time in our lives. The subject matter of the attached article relates to medical insurance companies reimbursing medical professionals for end-of-life counseling provided to their patients. I repeat, this counseling is not controversial. As Ms. Harrop states, “Critics of end-of-life discussions argue the doctors would ‘push’ patients to end their lives prematurely. Why would doctors do that? Where’s the financial incentive in losing a patient?”
The report Dying in America calls on Congress “to end the ‘perverse’ financial incentives that rush fragile patients into invasive medical treatments they’d prefer to avoid.” That being the case, it seems to me that counseling a patient about their dying wishes hurts, more than helps, the physician’s bottom line, so forget the nonsense about doctors encouraging patients to die sooner than later. That’s just hogwash.
“Meanwhile, there’s evidence that for some very ill people, a palliative approach may extend life longer than industrial-strength medicine.” And certainly ones final days without the poison of chemotherapy that has no prospect of curing a cancer, would be far more comfortable than if that therapy had been employed. “In a study of terminal lung cancer patients, the group that chose hospice care actually lived three months longer than those subjected to hard chemotherapy.” Again, that would be a more pleasant exit from this life than suffering the ravages of a chemo treatment that is not curative in nature.
“An end-of-life talk with a doctor spells out the options. Patients can use it as a basis for filling out an advance care directive – a form listing which treatments they would want or not want.” And let’s not forget that such a document only comes into play if the patient can no longer speak/express his or her wishes regarding their care. An advance care directive is a legal document and as such, spells out when it can be put in motion, and when it can not. If ever there’s a time when you can benefit from being a control freak, your final days is it.
This legal document is not just for the older population.
Once you’re considered an adult, you can decide what you want regarding your life. Don’t wait until it’s too late and someone else decides medical matters without your input.
“Mr. Desonier, I think you can stop scheduling an annual colonoscopy from this point forward. You’ve been very diligent about this aspect of your health care for many years, but at your age, I think this procedure provides inconvenience and discomfort that you can do without.”
My dad was 84-years old when his gastroenterologist made that declaration. I never thought I’d say this, but that gastroenterologist is my hero. My father had one suspicious colonoscopy a decade or so earlier, and was advised to undergo that test every year to be certain that no cancer was present. If you’ve ever undergone this test – and you should have a baseline one after the age of 50 or earlier if you’re symptomatic – you’ll understand when I say that I’d rather have a root canal than have my colon flushed and probed every year. Here’s TMI for you: I’m 60 and had my first exam of that sort seven years ago and passed with flying colors. I’m on the ten-year plan so I have a couple years left before I hop on that table again. But I digress.
The above article will shock you to your senses as to how incentivized doctors are to keep prescribing outlandish medical procedures on their elderly patients. Most, but not all, such procedures benefit medical professionals and facilities and provide no benefit to the patients that undergo such procedures. Here’s a quote from the above article that is sickening in its implications:
Medicare spends a quarter of its $551 billion annual budget on medical treatment in the last year of life. A third of Medicare patients undergo surgery or an intensive-care-unit stay in their final year (of life.)
The author’s 80-year old father had a “stroke-blasted” body and underwent the surgical procedure of having a pacemaker installed to correct a slow heartbeat that gave him no health problems. Medicare paid $12,500 for that procedure. Her father’s family doctor didn’t approve of the cardiologist’s decision to perform that surgery. Medicare would have only paid that doctor $54 for a medical consultation with the family to weigh the pros and cons of such a procedure.
What’s the lesson here? There needs to be a greater focus on slow medicine in the form of palliative care, rather than fast medicine that dictates quick consults and immediate – and oftentimes drastic – medical intervention that robs the elderly patient of living on his own terms, and dying when its the body’s time to do so.