Being Mortal
Preamble
Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need.
Measures of daily living activities
If you cannot, without assistance, use the toilet, eat, dress, bathe, groom, get of bed, get out of a chair, and walk—the eight “Activities of Daily Living”—then you lack the capacity for basic physical independence. If you cannot shop for yourself, prepare your own food, maintain your housekeeping, do your laundry, manage your medications, make phone calls, travel on your own, and handle your finances—the eight “Independent Activities of Daily Living”—then you lack the capacity to live safely on your own.
What is the goal?
It is a near-universal reality. Nursing home priorities are matters like avoiding bedsores and maintaining residents’ weight—important medical goals, to be sure, but they are means, not ends. What do we value perhaps friendships, privacy, a sense of purpose etc. It seems we’ve succumbed to a belief that, once you lose your physical independence, a life of worth and freedom is simply not possible.
In the horrible places, the battle for control escalates until you get tied down or locked into your Geri-chair or chemically subdued with psychotropic medications. In the nice ones, a staff member cracks a joke, wags an affectionate finger, and takes your brownie stash away. In almost none does anyone sit down with you and try to figure out what living a life really means to you under the circumstances, let alone help you make a home where that life becomes possible.
Maslow argued that safety and survival remain our primary and foundational goals in life, not least when our options and capacities become limited. If true, the fact that public policy and concern about old age homes focus on health and safety is just a recognition and manifestation of those goals. They are assumed to be everyone’s first priorities. Reality is more complex, though. People readily demonstrate a willingness to sacrifice their safety and survival for the sake of something beyond themselves, such as family, country, or justice. And this is regardless of age.
What can be easily measured, might not be what should be measured nor focused on.
We have no good metrics for a place’s success in assisting people to live. By contrast, we have very precise ratings for health and safety. So you can guess what gets the attention from the people who run places for the elderly: whether Dad loses weight, skips his medications, or has a fall, not whether he’s lonely.
“A life designed to be safe but empty of anything they care about.”
Why being merely housed and fed and safe and alive—seems empty and meaningless to us. What more is it that we need in order to feel that life is worthwhile? We all seek a cause beyond ourselves. This was an intrinsic human need. The cause could be large (family, country, principle) or small (a building project, the care of a pet). The important thing was that, in ascribing value to the cause and seeing it as worth making sacrifices for, we give our lives meaning.
“Medical professionals concentrate on repair of health, not sustenance of the soul.”
Advance directives
It became routine for all patients admitted to a hospital, nursing home, or assisted living facility to sit down with someone experienced in these conversations and complete a multiple-choice form that boiled down to four crucial questions. At this moment in your life, the form asked:
Do you want to be resuscitated if your heart stops?
Do you want aggressive treatments such as intubation and mechanical ventilation?
Do you want antibiotics?
Do you want tube or intravenous feeding if you can’t eat on your own?
“I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you”
Breakpoint discussion
A series of conversations to sort out when they need to switch from fighting for time to fighting for the other things that people value—being with family or traveling or enjoying chocolate ice cream.
Interpretive doctors
They ask, “What is most important to you? What are your worries?” Then, when they know your answers, they tell you about the red pill and the blue pill and which one would most help you achieve your priorities. The mistake clinicians make is that they see their task as just supplying cognitive information—hard, cold facts and descriptions. They want to be Dr. Informative. But it’s the meaning behind the information that people are looking for more than the facts. The best way to convey meaning is to tell people what the information means to you yourself.
Bad news
A strategy palliative care physicians use when they have to talk about bad news with people—they “ask, tell, ask.” They ask what you want to hear, then they tell you, and then they ask what you understood.
Autonomy
This is what it means to have autonomy—you may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them. What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?
Pain and Peak-End rule
An average of the pain experienced at just two moments—the single worst moment of the procedure and the very end. People seemed to have two different selves—an experiencing self who endures every moment equally and a remembering self who gives almost all the weight of judgment afterward to two single points in time, the worst moment and the last one. The remembering self seems to stick to the Peak-End rule even when the ending is an anomaly. Just a few minutes without pain at the end of their medical procedure dramatically reduced patients’ overall pain ratings even after they’d experienced more than half an hour of high level of pain.
New model of age care
NewBridge shared its grounds with a private school for students in kindergarten through eighth grade, and the two places had become deeply intertwined. Residents who didn’t need significant assistance worked as tutors and school librarians. When classes studied World War II, they met with veterans who gave firsthand accounts of what they were studying in their texts. Students came in and out of NewBridge daily, as well. The younger students held monthly events with the residents—art shows, holiday celebrations, or musical performances. Fifth and sixth graders had their fitness classes together with the residents. Middle schoolers were taught how to work with those who have dementia and took part in a buddy program with the nursing home residents. It was not unusual for children and residents to develop close individual relationships. One boy who befriended a resident with advanced Alzheimer’s was even asked to speak at the man’s funeral.
“They live like they would live in their neighborhood. They still get to make poor choices for themselves if they choose.”
Athens village
A neighborhood support for the aged to stay in their homes. The Cohns got a group of friends together, and in 2009 they formed Athens Village. They calculated that, if they could get seventy-five people to pay four hundred dollars per year, it would be enough to establish the essential services. A hundred people signed up, and Athens Village was under way. One of the first people they hired was a wonderfully friendly handyman. He was willing to help people with all the mundane household matters that you take for granted when you’re able but that become critical to surviving in your home when you’re not—fixing a broken lock, changing a lightbulb, sorting out what to do about a broken water heater. He could do almost anything. People who joined felt the maintenance guy alone was worth the four hundred dollars. They also hired a part-time director. She checked up on people and pulled together volunteers who could stop by if the power was out or someone needed a casserole. A local visiting nurse agency provided free office space and a member discount on nursing aide costs. Church and civic organizations provided a daily van transportation service and meals-on-wheels for members who needed it. Bit by bit, Athens Village built services and a community that could ensure that members were not left flailing.