As a pastoral care worker for my parish I visit parishioners who are in assisted living facilities, and nursing homes. What strikes me each time I go on a pastoral visit is not just the vast differences in living conditions at some of the institutional housing, but, and perhaps even more than the differences relating to income, I am struck by the odd similarities of these institutional settings. Yes, it is definitely nicer to walk into an institution that is carpeted and dressed up to look like home, with books lining the shelves and gathering rooms for tea, and a dining hall that looks like a restaurant. Some of the places I’ve visited have cats roaming around, and working dogs, and even birds for viewing. It almost makes sense until I look around and think about how isolating and limiting the entire set-up is for our elderly. One could argue that the elderly tend to desire living with other elderly and so it really is not involuntary isolation. But, it is limiting in ways that reduce our elderly to the objects that facilitate their survival, such as, walkers, wheelchairs, oxygen, and ramps.
Most, if not all, of the nursing homes and assisted living facilities I visit (which are usually together so that once you need full-blown assistance you can easily go to the adjacent hall), are isolated or at the periphery of residential areas. They are surrounded by busy main drags and then ensconced in parking lots. They are closed systems. No one from the neighborhood (usually there is no neighborhood), is going to walk by and so much as wave hello. I sometimes see residents of these places hanging out in their wheelchairs in front of the elevator because that is the most interesting place to be — the elevator door opens and life gets on and off!
Typically, though, the elderly are treated to a vast array of entertainment and distractions, from the local artists who bang out tunes corresponding to some point in time for the group, to arts and crafts and reading time. I look around and I see wheelchairs and bent heads forced to listen to some rendition of Bobby Darin’s “Somewhere beyond the Sea”. I cringe and hope if I end up in a nursing home I’m not forced to listen to the Beatles or Billy Joel (Not that I didn’t like them when I was young…but, my tastes have changed). I also see the elderly being wheeled into a room to do arts and crafts, and once I even overheard story-time — which, I have no problem with reading to someone, but reading as if everyone in the room were 5 years old bothers me. There’s nails too. As if paint on your nails is what every old woman wants.
What do our elderly want? What do people want as they age and are facing end of life challenges? What does anyone want who is facing a terminal illness? Atul Gawande, a surgeon and professor of medicine explores these questions in detail.
Being Mortal: Medicine and What Matters in the End by Atul Gawande.
“You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions — nursing homes and intensive care units — where regimented, anonymous routines cut us off from all the things that matter to us in life. 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. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.page 9 (Introduction)
Atul Gawande devotes the first half of his book presenting the reality of some of our nursing homes and gives the reader an historical overview of how they developed as wings of hospitals. Then he takes us through a tour of the alternatives. So why aren’t there alternatives you might ask? Here you will find there are some great alternatives, but then you will see how alternatives attract those developers who want to make money and have absolutely no interest in creating a true alternative. But more than unscrupulous business people what struck me was the idea that we so often focus on issues of safety without considering how safety protocols for the elderly might not be something they want or need to have a meaningful life.
The emphasis, as Gawande moves through the book, is clearly on meaningful, and, as one would suspect, meaning is made differently by different people. Gawande found that most nursing homes focus on safety and efficiency, which leads to offering “passive activities” such as watching movies, bingo and group activities (page 75).
Assisted living most often became a mere layover on the way from independent living to a nursing home. It became part of the now widespread idea of a ‘continuum of care,’ which sounds perfectly nice and logical but manages to perpetuate conditions that treat the elderly like preschool children. Concern about safety and lawsuits increasingly limit what people could have in their assisted living apartments, mandated what activities they were expected to participate in, and defined ever more stringent move-out conditions that would trigger ‘discharge’ to a nursing facility. The language of medicine, with its priorities of safety and survival, was taking over, again.page 101
As Gawande gets into the second half of his book when he is dealing with questions of life and death, meaning, again, is only something that can be determined with a person who is dying and not for a person who is dying.
We begin to see, through the many conversations Gawande has with doctors, nurses, elderly and those who are dying, that what is important cannot be assumed to be the same for everyone; each person we must think through the difficult questions. Gawande takes on the medical community as he insists that cannot shy away from the difficult questions. Doctors are not just there for information and to present alternatives; rather they must begin to participate in the whole dynamic of living and dying; they must enter into the relationship with their patients, asking what they fear most about their living situation or their illness and then when they respond continuing to walk with them in order to create a meaningful life up until the end.
“People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs and the cost of this failure is measured in far more than dollars.”page 155
Gawande offers one story after another of people wanting not just a prolongation of life, but of a human soul longing for meaning. He points to communities working to create a complex living environment for the elderly so that they may continue growing old in a way that is not demeaning or dismissive.
As I think about pastoral care, and possibly any kind of care, it is not just about visiting the sick or visiting the dying, but rather living in community with them. This is not to say we all must huddle together in the same house or that people do not need the level of care a nursing home provides. Rather, we must change our goals and our structures to provide more complexity for all stages of living. The end goal of living for as long as we possibly can must open to living meaningful lives. A meaningful life does not mean we can only live if it is without a walker or a wheelchair, rather it means we do not sentence a person to isolated housing in the middle of busy roads and parking lots. What about a community right in a residential neighborhood consisting of a group of housing units? There are alternatives to seven or eight floors of elderly and no way out or no where to go — not even a garden to sit and stare at a flower.
Being Mortal — the title attracts and repels. Yes, we know we are mortal and we want to take a peak inside the covers, but no, we do not want to think about our mortality. Do we really have to think about death while we are living?