The Independent Self: Here's a surprising fact: as soon as any people group has the money, the health and the opportunity, their elderly will choose to age independently. A large number of elderly people, all over the world, given the choice, prefer living alone. We think American handles aging badly because we worship youth, when it's actually because we worship the independent self. We all want to paddle our own canoes.
So here's the problem we've set up: if most of us prefer to live independently, and most of us are living long enough that age is going to impact our ability to do so, what can we do? We say it's a medical problem, but it's really a personal problem, the conflict between our ambitions and the normal loss of functioning in the aging body. We don't want someone else to change our diapers and smash up our food and read to us because we can't see properly and help us get dressed because our fingers can't manage fasteners any more. But there's just a limit to how much medicine can restore our continence and preserve our teeth and vision and dexterity-- and I've watched that losing battle more than once.
Things Fall Apart: This situation is relatively new in the history of mankind. For most people throughout most of history, life and health were connected: if you were alive, you were probably pretty physically functional, because if you weren't, you would probably die pretty quickly of your infirmity. Concurrently, death and age were not at all connected. Of course there have always been extremely old people-- Solomon wrote about the ravages of old age in the book of Ecclesiastes-- but no more people died of old age than died of infections or viruses or accidents or violence or starvation.
But now, for the many people who do make it to old age, instead of rolling along feeling great and suddenly being bitten by a mosquito or having a stroke or getting hit by a vehicle and dropping dead, we experience a slow and uneven decline that may start in the middle of our working years. "Human beings fail the way all complex systems fail: randomly and gradually," says Gawande. But only recently have we been living long enough to realize that, so we act like it's an offense --against society, against ourselves, or against God-- to have infirmities and to need help.
Dependence: Gawande says"Old age is not a battle. Old age is a massacre." Both my parents experienced it that way. Your mobility dies, and your fine motor coordination is cut off at the knees, and your attention span gets hacked to pieces, and heaven help you if both your hearing and your vision go. Even the bravest survivors will pull me aside and tell me not to get old.
Nursing homes originated for one reason: to clear out hospital beds that were filling up with the walking-- or newly immobile, as the case may be-- wounded. This purpose survives in the specific kind of home called a Skilled Nursing Facility, where people who are too sick to back to their previous situation but not sick enough to qualify for hospital coverage any more go to regroup, get some rehab or wound care or IV treatments, and figure out what happens next. They are most likely there because they fell, or maybe because they got an infection or had a stroke or a 'heart event.' But they didn't sign up for this train ride, they just found themselves on it, and next thing they know, someone else is packing their things because they can't go home again.
Sociologist Erving Goffman groups nursing homes with prisons, military training camps, orphanages and mental hospitals as "total institutions"-- places cut off from wider society and run with a singleminded focus-- in the case of the nursing home, that focus would be "caring," defined primarily as "safety." The hospital's goal is to stabilize you and get you out. The SNF's goal is to fix whatever broke so you can, in due time, vacate that bed as well and move on. But the older you are, the better the chance that you will not be moving back to the location you left to go to the hospital. It has too many stairs, or you are too isolated, or you weren't eating right, or you got your meds mixed up, and now you need help just to be safe.
Assistance: In1983, Karen Brown Wilson invented an alternative to the traditional nursing home. She called it Park Place, "a living center with assistance, " and the residents were tenants, not patients. They lived as they pleased but had access to help with food, personal care and medications. They had call buttons and access to a nurse on site, but they also had the right to refuse restrictions that put the convenience of the staff, or even their own safety, above their autonomy. Care providers were trained to understand that they were guests in the tenants' homes. By 1988, it was clear that this model, the one followed more or less to this day in assisted living and personal care homes, resulted in higher levels of cognitive and physical functioning and greater satisfaction with life than patients in nursing homes enjoyed, while reducing costs by 20%.
The concept spread rapidly and of course became co-opted, diluted and regulated beyond recognition. Rolled into the "continuum of care" and dominated by the safety and survival priorities of medicine, residents soon once again found themselves limited in how they could live, what they could have, what they could do and when they could do it--treated like children for their own good. By 2003 the trademark combination of privacy, autonomy and support for the frail was only present in 11% of places labelled as assisted living. Wilson is still working on this problem, as are many care homes.
It is a lot of work for staff to understand how each resident defines life and what kind of assistance they might need to achieve their goals. Doing for residents-- turning them into patients-- is more efficient than allowing them to do what they can for themselves, even when it comes to something as simple as dressing in the morning. The matter is made more complicated by the fact that we ourselves are not always good at gauging our own abilities. Some people will fold at the first symptom of old age, begging others to take over responsibilities they could really still manage themselves. More commonly, people who were used to walking for miles or cooking for themselves or managing their own medical care insist on doing so long after it's clear to everyone else that they no longer have the ability to do so. Thus, staff is in a dance between what residents want to do and what they can do and what can be reasonably accommodated in compliance with the regulatory and financial environment of the institution.
After all, helping people really live is harder to measure than health and safety. Worst of all, the people staff are helping are not the real customers-- it's their kids! Wilson and other advocates for the "living with assistance" model know that "we want autonomy for ourselves and safety for those we love." Who can leave their parents in a situation that isn't really safe-- even if it's the parents' pursuit of their own best life that exposes them to risk?
A Better Life: But what is autonomy? Is it free action? For almost no one is that true. "Our lives are inherently dependent on others and subject to forces and circumstances well beyond our control." So regardless of the architecture or affiliation of the place we may find ourselves, we will still have to balance on the curb that lies between the story we have been writing all our lives and the bodies and minds we find ourselves in today. And for those whose stories have until now been built on productivity and action, that balance may be very difficult to find.
In 1991 Bill Thomas interested himself in how to lick "the Three Plagues of nursing home existence: boredom, loneliness and helplessness." He wanted to run a home, not an institution. He concluded that the answer was more life: plants, animals, a garden-- innovations he dubbed "the Eden project". He found that "the light turned back on in people's eyes." They walked the dog, they kept journals about their birds. The nursing staff resented the extra work, but the residents were excited to do it. Prescription meds dropped by half, deaths decreased 15%, and people who had been just sitting around started getting up and about. They had purpose. They were needed to tend the garden or walk the dog or watch the bird, so they exerted themselves.
It felt like my mother stayed at every facility in the county at some point, and the one amenity she would always choose to spend time with would be the aviary, or the fishtank, or, failing all else, the garden. Watching the behavior of the animals indeed turned her lights on. Another innovation Thomas spearheaded is the Green House Project, which is now in use across the country. It is based on home design that involves literally self-contained homes, with no more than 20 residents, all of whose rooms center on a dining room, living room, kitchen and family room. Residents are encouraged to conduct their daily life in the public areas, and caregivers are also encouraged to become part of the family, eating and relaxing with the residents as their schedules allow.
The principle that "simply existing--being merely housed and fed and safe and alive--seems empty and meaningless to us... we all seek a cause beyond ourselves," was well known before Josiah Royce articulated it in 1908. Victor Frankl, author of Man's Search for Meaning, famously founded a whole school of psychotherapy around this principle. Gawande observes that as we sense death approaching, "while we may feel less ambitious, we also become concerned for our legacy. And we have a deep need to identify purposes outside ourselves that make living feel meaningful and worthwhile." And yet, as Gawande observes, "For more than half a century now, we have treated the trials of sickness, aging, and mortality as medical concerns. It's been an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs."
Letting Go: Here are some fun facts for you: 25% of all medicare spending is for the 5% of subscribers in their last year of life, mostly for the couple of weeks or months where they are closest to death. 63% of doctors overestimate their patients' survival time, and those estimates average more than 5 times too long. We ask why people and their families have such a hard time accepting that they are at the end of the road, and maybe this is why: their doctors also can't accept that there is nothing left to do that is worth doing. As individuals, as families, we think we'll know when "there's nothing more they can do," but in a modern hospital, there's always something more that can be done.
"We pay doctors to give chemotherapy and to do surgery but not to take the time required to sort out when to do so is unwise.... in a war that you cannot win, you don't want a general who fights to the point of total annihilation." Gawande states that, based on outcomes, "If end-of-life discussions were an experimental drug, the FDA would approve it," because "you live longer only when you stop trying to live longer." He goes on to say that "A family meeting is a procedure, and it requires no less skill than performing an operation." It's a procedure doctors need to learn, because it shouldn't be the family's job to decide when the war is over. We are desperate, and we are ignorant and we have believed that medicine is Science when it's really half art and half voodoo. By the time a doctor is running down our odds and our options, we are sleep-deprived, we are in pain, we are running scared, and we are in no condition to understand our condition.
After a couple of hours, the surgeon came out to update me with bad news. The ugliest images were the accurate ones. Our options were a "heroic" surgery attempt that had a very high probability of killing my father on the table or leaving him completely crippled, or hospice. He didn't advise continuing the operation, but he offered it, and if I had insisted, he would have spent the rest of his day trying to pick cancer out of my dad's guts. Instead, I let him sew Dad up, wake him up and tell him the whole thing had been for nothing. He was now back to square one, but worse, because now he had a big surgery wound to heal from. Takeaway: Sometimes we can't even get a clear image of the problem until we open the patient up-- in the 21st century!
But here's the thing: my dad then proceeded to have three great months on hospice service. He went from being the terror of the retirement home to being "a marshmallow." He refused PT because he could-- he was on hospice! He lay in the bed, deconditioning, because he was dying anyway! He spent his waking hours watching movies, eating chocolate, drifting in and out of hallucinations that he obviously found intriguing, and receiving visits from pretty nurses and chaplains. He died more at peace than I had ever seen him before.
No doctor had known how to find out from him whether he really valued the life he found himself in at that time, where he struggled and strove to hang onto his identity, his activities, his accomplishments, losing ground almost weekly. He himself was ambivalent about whether he wanted to live or die. He had to go all the way, go under the knife, to realize that he was ready to crawl into bed and surrender to the death process.
Surgeons talk about "buying you more time"-- how much time are they talking about, exactly? or about a "60% chance of success"-- what is success, exactly? How did the doctor arrive at this percentage? What does failure look like? What does doing nothing look like? What is the shortest and the longest time a person with no treatment has lived? How about if they did get treatment? It would be nice if doctors could answer these questions even if we don't know to ask them.
Ezekiel and Linda Emanuel have identified three styles of medical communication. Some doctors act like priests and just tell you enough to get you to comply with what they have decided is best for you -- which is, of course, nearly always survival for one more day, one more month or one more year. Others dispense information-- too much information, indecipherable information, data delivered at 100 wpm-- and leave the decision to you, but the more you know, the worse all your options seem. How many doctors have the time and the inclination to be "interpretive," as Ezekiel and Linda Emanuel called it? They will ask questions until they understand your goals-- until you understand your goals-- and then inform you about the options and how they compare to the results you say you want. They are not generals on the battlefield or technicians under the hood of a car but counselors and contractors. And sometimes, they are life coaches, challenging your priorities and beliefs, pushing you to make better choices, and exposing what you really want, as opposed to what you want to want.
When we reach the stage where life becomes nothing but a series of medical crises and hospital visits, clarity on the actual probable length of one's remaining lifespan can be useful to narrow our focus and alter our activities in a way that is both freeing for ourselves and helpful for our material and spiritual heirs. We redefine our identity. We move our red lines. We stop butting our heads against the immovable object of chronic or terminal disease and decide what to do with our reduced circumstances. We find the realm where we still have autonomy.
By the time my mother found herself in this stage of life, experiencing what Gawande calls "One Damn Thing After Another" syndrome, I had not only my experience with my father, but a number oF other people's end-of-life journeys to draw from. I was starting to notice that most of the "damn things" that were following in rapid succession started with a hospital visit: deconditioning, MRSA, improper wound treatment, medical errors. And my mother knew that spending 20% of her year and $55,000 in medical facilities was no kind of life, and that she was tired of chasing cures. She fell again while I was out of town, and the assisted living called the ambulance, as procedure required, and I got on the phone with her and with them, and she refused treatment, and within the week she was on hospice status.
For nine months we went to the movies and to art shows and to the Olive Garden, and she read her Anthony Trollope collection. And when she fell off her scooter, probably as the result of a heart event, and realized she might die of complications, she literally said, "Whoopee." I knew if we agreed to get in the ambulance, and anything was broken, we would probably be talked into surgery, and that if she survived that, she would spend 6 weeks in a rehab hospital, and if she survived that, she would never be the same again. So instead, we sent the EMTs away again, and she spent her last two weeks sleeping, receiving visitors, listening to music and looking at her spectacular view. The last words she said to me were, "I love you too," and her last coherent conversation was a few days later, with a granddaughter she hadn't seen in a couple of years. Like my father, she was as much at peace as I had ever seen her, because she was allowed to exercise that one last slice of autonomy: choosing the way she died.
Courage: Gawande asks: "What mistake do we fear most? The mistake of prolonging suffering or the mistake of shortening life?" When we are terrified of losing one day we might have been able to save, we sometimes rob ourselves of the days we have in our hands. The dying role is important both to the terminal individual and to his or her community. As Gawande says: "People want to share memories, pass on wisdom and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay." They can't do those things very well with tubes in their mouths and heavy doses of morphine in their veins. The dying role becomes the role of the "fighter," who went down swinging... the general who led his troops to total annihilation in an unwinnable war.
Recently, I spent a weekend in the country with my extended family, celebrating my son's graduation. It rained most of the time, and my husband and I were both pretty sick, and the cabin I had rented sight unseen was moated with mud and beseiged by bees and really just too small. But it was a lovely weekend. Why? Because, as Daniel Kahneman tells us in Thinking, Fast and Slow, we seem to be literally of two minds. While we are experiencing something, every moment has equal weight-- the moment when we introduce Great-Grandma to the newest grandbaby, the moment when we realize that this commencement speaker is going to take the cake as the absolutely worst commencement speaker we have ever heard, the moment when we can't sleep because we can't stop coughing, the moment when 12 people crowd into a cabin living room and take turns reading Oh, the Places You'll Go to the graduate-- they all run together and all last forever. But when it's over, we evaluate the experience by two points: the best or the worst part, and the last part. And I was lucky enough to have several really great parts to look back on, and that the last thing we did on the trip was go to an Italian buffet for lunch. So, yeah, it was a lovely weekend. As Gawande says, "In stories, endings matter, and your remembering self is attempting to recognize not only the peaks of joy and valleys of misery but also how the story works out as a whole."
What kind of ending will bring sense to our life story? What makes life worth living? What will we pursue at any cost, and what is worthless to us? When is longevity the last priority? Is our goal just to make life longer, or to make it better? Endings matter-- are we holding the space for ourselves and each other to make good endings to the stories of our lives?
