Being Mortal Medicine and What Happens in the End Atul Gawande
Some Context
Although I retired from my career as a college/university instructor four years ago, once again, I am working full time. Traditional retirement doesn’t suit me.
During the four years, I’ve spent a lot of time researching retirement, trying to learn more about how others are coping and looking for ways to continue to contribute as well as information on maintaining my health and fitness.
After listening to Atul Gawande’s Being Mortal Medicine and What Happens in the End, twice, I decided the information he shared is vital for those of us who are entering, or well ensconced in, our senior years and of great interest to our children, who well may be called on to make decisions for us.
What follows is a summary of his work along with some of my thoughts and research.
I hope that as you read this you will take the opportunity to reflect on your future and take steps to maintain a quality of life that resonates with you.
Wellness Scales
In order to continue to live on our own we need to be seen by our physicians, family and social workers as physically independent. This independence is measured by our ability to undertake ADL’s (Activities of Daily Living)
Basic Activities
Use the toilet
Eat
Dress
Bathe
Groom
Get out of bed
Get out of a chair
Walk
More Complex Activities
Shop
Prepare our own food
Maintain our house (housekeeping)
We are Living Longer
Health care has improved as have our standards of cleanliness, our access to nutritional food and our activity levels, so we are living longer, but the trajectory to death is the same, it simply happens over a longer period of time. Medical treatments can now, extend the descent to death. In spite of these treatments, people don’t return to their previous baseline and eventually there is no recovery at all.
Increasing large numbers of us die of old age. In a matter of months or weeks our body becomes overwhelmed. Death can still come as a surprise to us and to our close friends and family members. Usually, there are a number of coalescing factors so that no single disease leads to the end. I’ve explored some of these factors below.
Long of Tooth
That old expression about being long in the tooth is based on a valid precept. Our teeth are a good indicator of how we are aging. As we age, our tooth enamel thins, our gums recede, and our teeth loosen. Our receding gums do make it look as if our teeth are getting longer!
The muscles in our jaws lose 40% of their mass and the bones of the jaw, like the bones throughout our bodies, loss mass as well, because they become porous.
These changes can make it difficult for us to chew so we gravitate to softer foods. As you may have noticed, chewing crunchy food makes us feel better – it increases the endorphins in our bodies, so the shift to softer food might impact our sense of wellbeing.
High Blood Pressure
As our bones and teeth soften, our blood vessels and arteries harden. Our joints, muscles, and heart begin to accrue deposits of calcium and stiffen.
The loss of bone density is a better predictor of death than cholesterol levels.
As a result of the stiffening of the arteries, the heart has to generate increased pressure to push the blood through them. Most of us develop hypertension by the age of sixty-five. Our heart develops thicker walls and is less able to manage exertion. The peak output of the heart decreases steadily after the age of thirty.
We are less able to run as far or as fast or to climb a flight of stairs as easily as we could when we were younger. Our heart muscle thickens and our other muscles thin. By age eighty, most of us have lost about half of our muscle weight.
This news is not as bad as it sounds. At the age of fifty-one, I completed my first Olympic Distance Triathlon and my last one at the age of fifty-four.
At the age of seventy-seven, my sister who has always had a fear of water, and who smoked heavily for over fifty years, began water aerobics classes. So even after thirty, we can achieve much.
Our Hands Tell the Story of our Aging Body
Our hands are a microcosm of our bodies and we can observe changes in them as we age.
We lose our sensitivity to touch and our motor dexterity, often our finger joints swell, our skin becomes dry and chapped and the formerly bulging muscle just below our thumb flattens out, much like our derriere! It’s no wonder that using the keyboard on a tiny mobile phone becomes increasingly difficult, if not impossible.
Our Senses Are Impacted by Age
The elasticity of our eyes diminishes; the amount of light reaching the retina of a healthy sixty-year-old is one third that reaching the retina of a healthy twenty-year-old. Our night vision decreases, and we find it more difficult to drive after dark.
Our sense of smell diminishes which can lead to a decrease in appetite.
Age spots appear and our sweat glands stop functioning.
Our Spare Parts
Our bodies are designed with spare parts; we have an extra kidney, an extra lung, an extra gonad and extra teeth. The DNA in our cells is damaged frequently but we have a number of repair systems. If a key gene is permanently damaged there are usually extra copies of the gene nearby, and if the entire cell dies, other cells can fill in.
Our Bodies Begin to Fail
Our bodies accumulate micro cellular problems: one too many joints become damaged, one too many arteries harden. Our stem cells which until now have migrated to replace ailing stem cells, run out. Just one more defect is enough to impact the whole, resulting in the condition known as ‘frailty.’
The process of aging can be slowed but not stopped. We are genetically programmed to age; our bodies begin to fail. Like other mammals, we have a pre-programmed life expectancy. Canada Geese have a life expectancy of twenty-three years while Emperor Geese have a life expectancy of just over six years.
Ways to Manage our Aging Process
As much as we might believe that we are in control of our lives, that has never been the case. If you have tried meditating, you know how difficult it is to control your thoughts and if you’ve ‘fallen off the wagon’ after your New Year’s resolution to ‘get into shape’, you know how hard it is to keep your body in line. Managing in our old age is possible and we can learn to accept and adapt to the changes in our bodies and our minds. We can also perform some preventative maintenance which could help us stave off the worst effects.
Simple Steps
Take care of your feet.
If you are unable to trim your toenails, seek help
See a podiatrist to ensure that bunions and other growths are under control
Use a soothing cream on your feet to hydrate them
Have your eyes checked at least once a year
Visit the dentist at least once a year and get your teeth cleaned
Floss your teeth daily
Invest in an electric toothbrush and use it
Put lotion on your skin and use sunscreen
Wear a hat in the sun
Eat enough to maintain your strength
Simplify your medications with the help of your physician
Don’t self-medicate
Complex Steps
Eat with someone else
Socialize with your friends and family
Make sure your home is safe – remove tripping hazards, put rails in your bathroom, make sure your stairs are safe and have sturdy handrails
Choose to live in a place where you can walk safely on a road, a trail or a sidewalk
Engage in activities of interest: culture, sports, movies, nights out with friends, dinners etc.
Have access to plants, pets, animals
Take a defensive driving course (risk of a fatal car crash with a driver eighty-five or older is three times higher than with a teenager so accept that offer from your grandchildren to drive you)
Be mindful, focus on what you are doing rather than doing it automatically
More Complex Steps
Who we are needs to be connected to who we were and who we want to be.
Decide what makes our life worth living and make that our guiding star.
We need to have a purpose that brings meaning, pleasure, and satisfaction to our lives.
We need to expand our choices to live a worthwhile life
We need to acknowledge that we are important, and we have something to contribute
The Importance of Maintaining our Balance
As our bodies begin to fail, we become more susceptible to falling. When we go for our annual checkup, we may be asked to balance on one leg. The optimum is to be able to balance for thirty seconds or longer. This is important because maintaining our balance makes it less likely that we will fall and if we do fall, having good balance could decrease the injury we sustain from the fall.
Three factors contribute to the likelihood of falling:
Taking more than four prescription medications
Muscle weakness
Poor balance
Without these three factors, we have a 14% chance of falling. With these three factors we have a close to 100% chance of falling
One More Reason to Avoid Falling
As a result of aging, our brains shrink, creating a space around them that makes falling ever more perilous, if we fall, our brain, no longer fully cushioned, may hit against our skull and bleed.
Our frontal lobes are the first part of our brain to shrink. This is the part of our brain where we weigh ideas and multitask, thus by the age of eighty-five, forty percent of us have textbook dementia.
We are Living Longer and There are More of Us
Around the world, there has been a shift from older people living in care homes or with their families to older people living alone. While for the first part of one’s senior years, one might live with a spouse or a partner, often that partner passes away leaving one person on his or her own.
The number of people in their sixties, seventies and eighties is increasing in comparison to those in their twenties, thirties and forties. There is a huge wave of people who have reached sixty–five, the age of retirement in many countries. In Japan, seventy-five is now the age when one is considered a senior, up ten years from sixty-five.
Relocating
There is much written about where to live after we retire – not only in our home countries but internationally. The selection of international cities is based on the cost of living, access to transportation, medical care, culture, activities, ease of communication (English being the lingua franca) and the weather. Within the United States, college towns are often recommended as places where seniors can live an active life. These towns are walkable, with centres that provide shopping and entertainment and medical assistance is close by.
WHO has defined ‘Age friendly Cities and Communities’ as those where “…policies, services and structures related to the physical and social environment are designed to support and enable older people to “age actively” – that is to live in security, enjoy good health and continue to participate fully in society” (Marston, 2021)
Making the choice to move away from friends and family to a city or country that we perceive as ‘age friendly’ is a big step, one that takes thoughtful research. While attractive in many ways, with climate often topping the list of attractions; it may take a while to settle into another city or country. We need to proceed with our eyes open and we need to be willing to adjust to a new culture even if we have relocated within our home country.
Assisted and Independent Living
Most of us will require care as we age. Think back to those activities of daily living, I listed earlier. Eventually we will need help with some of these activities and before this happens, it’s important to have made some decisions about where we want to live and, perhaps, with whom. What kind of community, or facility will work best for us, do we have the resources to age in place?
What questions do we need to ask ourselves and those who are closest to us and who will, in the end, either make these decisions for us or with us?
The most important step we can take is to begin to discuss our preferences and to get to this stage, we need to accept that we are aging. In short, we need to prepare for a continuum of care.
In the United States, senior’s residences or complexes were being built as early as the 1960’s when Sun City in Phoenix was launched for seniors. These communities were designed for seniors to live a life of active retirement and included activities like golf, card games, tennis, swimming, dining out, and came equipped with salons and spas.
Assisted Living
The concept of Assisted Living was developed in the United States by Dr. Keren Brown Wilson, a gerontologist. She was influenced by her mother, who had a stroke early in life and lived in ‘care homes’ where she felt she had little autonomy.
Understanding that nursing homes were designed to control the residents, Dr Brown Wilson’s vision was to create an environment where each individual or couple had a small place with a kitchen, a bathroom, a lock on the door and a thermostat. A place where one could have a pet, do their own projects, choose their furniture, have their keepsakes close at hand and essentially do what they wanted to do when they wanted to do it. One could invite friends over, have a drink, take risks, could take their medication or not. Essentially, Dr. Brown Wilson recognized the need we all have for freedom and autonomy.
Communities designed on this model cost twenty percent less to operate than traditional care homes and follow-up studies showed that those living in these communities experienced an improvement in physical and cognitive functions.
What Makes Life Worth Living?
By choosing to live in an Assisted Living community, rather than a care home, one could argue that one is voting for autonomy over safety.
While we need to be aware of our limitations, we need to remember that a sense of responsibility can impart a sense of self-worth.
We talk a lot about quality of life – so it’s useful to decide for ourselves what a good quality of life is as we age. Atul Gawande describes it ‘as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world’.
Senior Care Homes
Senior care homes are based on the idea that aging is a medical problem, so they are designed to ensure that we are safe by having us live our lives under the supervision of ‘medical staff’. Most of us want, and expect, much more than that.
Our grown children, who help us decide where to live, are often reassured by the level of care and the consistency that these homes offer. They know we will be given our medications in the correct quantity and at the right time and that we won’t have to cook or clean. This is important to them because they really don’t have time to do these things for us.
For most of us, this is just too much structure. Recall the story of the man who ran away from the care home on his one hundredth birthday!
What our children don’t see is that we still want to be in control. We want to walk on our own as much as possible and not be forced to use a walker or worse yet, a wheelchair! We want to take our medication on our own as we have always done; and we really don’t want to be supervised and monitored. In short, we want to live in a place that feels like home!
Care homes monitor our weight, prevent us from developing bedsores, ensure we take our medications and provide us with a regimen. We are told when to wake up, when to eat, when and how to engage in activities, whether or not we will have a roommate and who that roommate will be.
Our lives become circumscribed. We become institutionalized. In many care homes our lives resemble the lives of prisoners.
When my mother-in-law first became a resident of a care home, she would go out driving with one of the other residents, but the care givers soon put a stop to that. They wanted to know exactly where she was at any given moment. They didn’t realize that she was cut off from her friends and was suddenly unable to engage in activities in the town where she had lived for well over fifty years.
Most of us are not prepared to live in a small room, where we have one tiny closet, a dresser, a television, and a few of our photos. We don’t want to see our lives shrink to this! Want to enjoy a glass of wine before or with our dinner or a chat with our friends.
If we resist the rules, we are called ‘feisty’. A word coined, it seems, for older people who want to have a say in their lives. Don’t take it as a complement!
If we resist too much, we can be restrained; tied in our chair or worse yet, tied in our bed.
What About a Care Home with Pets, Plants and Kids?
One of the most interesting stories Atul Gawande told is about a care home Dr. Bill Thomas redesigned. When Dr. Thomas first took on the work of managing the care home, he found it drab and lifeless. Loneliness, boredom and a sense of helplessness prevailed. He convinced the board members and those working in the home that they needed to introduce life back into the home. Life in the form of birds, cats, dogs and plants – on every floor of the home, every resident got a bird!
Gradually, the residents began to take responsibility for the pets, who provided much needed companionship. They walked to dogs, named the birds, cared for the cats and watered the plants.
Dr. Thomas introduced the idea of an onsite childcare centre and after school care for the staff’s children. The children began interacting with the residents.
Even the outside of the home changed with the introduction of gardens to grow both flowers and vegetables. Rabbits and chickens came next.
Dr Thomas determined that people, no matter our age, need a purpose, we need meaning in our lives, we need to experience pleasure and satisfaction.
We all need to be a part of something bigger than ourselves, perhaps that is why we want to live near our children. We want to see others achieve their potential.
After Dr. Thomas’s redesign of the care home, the residents’ medications decreased by thirty percent and deaths fell by fifteen percent. More importantly, love, care and laughter replaced loneliness, boredom and helplessness.
Living with Family
I talk with a lot of people and I have yet to hear someone say they are planning on living with their son when they are no longer able to live on their own. For some reason people who have daughters are quick to tell me that they are going to live with one of their daughters.
Even if our daughter decides that we can live with her and her family, there are a lot of adjustments that need to happen. One of my friends says that when her children moved back in with her and her husband – mutual caregiving was required, there were many adjustments to be made and they didn’t happen all at once. There are ongoing points of friction with concessions being made by all four in order to live well together.
Often our grown children live in the suburbs and we no longer drive. This precludes us from visiting shops, libraries, cafes and community centres on our own, putting an extra burden on our children to ferry us around. The upside of living with our children and their families might be the presence of a pet or loving, considerate grandchildren but they will most likely have busy lives (the grandchildren, if not the pet).
We also need to think of the pressure our children will face if we move in with them. Likely, they will hold responsible positions and we will simply add to their workload.
Taking care of an elderly person is difficult – there are medications, specialists and tests. This entails time – and our children may not have that time to devote to our care.
Support for Staying in Our Homes
There are home care agencies that provide cleaning services, care giving, shopping and cooking so we can remain in our homes.
There are also low-income apartment complexes that make it possible for people to stay in their apartments.
Beacon Hill is an initiative that makes it possible for seniors to band together to hire needed resources while remaining in their homes.
Prolonging Life
As we age, we are likely to develop medical conditions and we need to consider whether some need to be treated while others would be best left alone.
It seems that no matter the medical condition, there are always a number of treatments available. Our physicians and specialists will most likely offer many different treatments; these are not to be confused with cures. Every treatment will have benefits and side effects – and we need to decide if the benefits outweigh the side effects.
Sometimes seniors choose to go ahead with a treatment because they feel pressured by their family or put more simply, they don’t want to let their family down. They want to be seen as resisting death to the end.
Focusing on treatments can stop us from realizing that we are dying. We may not see our friends and family because we are concerned about getting an infection, when, in reality, an infection, is the least of our worries when death is knocking at our door. We forfeit the joy we could have in order to prolong our life. But what is the point of prolonging our life if we are alone, bereft of friends and family?
Before Time Becomes Short
We need to ask ourselves some questions before time becomes short. We need to determine what ‘quality of life’ means for us and then, we need to share that with others so they will know our limits.
These questions are adapted from those Atul Gawande suggested physicians ask their patients:
What do I understand about my situation and the potential outcomes?
What am I afraid of?
What tradeoffs am I willing to make and what tradeoffs am I not willing to make?
What action would I like to take or would l like my physician to take?
When Time Becomes Short
We need to think about what is important to us and tell our physicians and our loved ones, so they are aware of our preferences and will act within them. We might prefer a good life to the end, one that doesn’t entail heroic efforts to prolong it.
Atul Gawande reminds us that the dying have an important role to play, we need to share our memories, pass on our wisdom, say our farewells, prepare for death and accept that our life is complete.
Longitudinal associations of social group engagement with physical activity among Japanese older adults
Yuta Nemoto , Shinichiro Sato, Yoshinori Kitabatake, Mutsumi Nakamura Noriko Takeda, Kazushi Maruo, Takashi Arao
Archives of Gerontology and Geriatrics 92 (2021) 104259
Age Friendly cities and communities: State of the Art and Future Perspectives Joost Van Hoof, Hannah R. Marst on editorial International Journal of Environmental Research and Public Health 2021
DePaulo, Bella. How We Live Now: Redefining Home and Family in the 21st Century. Atria Books/Beyond Words 2015
Dr. Brown Wilson’s website https://jfrfoundation.org
Jonasson, Jonas. The 100-Year-Old Man Who Climbed Out the Window and Disappeared. Kindle Edition Hachette Books 2012
Dr Thomas is the founder the Eden Alternative https://www.edenalt.org