Our meeting in Archamps (see previous blog post) brought some basic cultural differences to the surface. Particularly thought provoking was the Japanese-European difference in attitudes toward aging, and dying.
In short, the European perspective is dominated by ‘activity theory’. Aging gracefully means staying active, physically and socially. My physical therapy education was the epitome of activity theory. It’s the therapist’s job to activate the patient. Stroke, hip fracture, surgery? Up and out of bed as soon as possible and then as often as possible. Joint pain? Move, train balance, build muscle. Tired? You need exercise and fresh air. In Sweden, patients can even get a ‘prescription’ for exercise.
In nursing homes, even very frail patients are lifted out of bed and propped into wheelchairs. The only time a patient is allowed to stay in bed is when the end is very near.
Not so in Japan. A person who complains of pain or fatigue is urged to rest. Take it easy. Conserve your strength. Don’t overdo, don’t push yourself. As a result, the number of persons confined to bed is much higher than in Europe.
This difference surfaced first when we discussed mealtime. In asking about the need for help with eating, the Japanese insisted that we include the alternative ‘uses a feeding tube’.
“But that is so uncommon, people are only on tubes for short periods of time,” said one of the Swedes.
“Oh, no,” the Japanese researchers protested in unison. “We have many old people who use feeding tubes for years.”
At first we Europeans were just puzzled. We asked questions, and the Japanese researchers confirmed that centenarians, even with dementia, could be kept in bed and on feeding tubes, for years at a time.
We explained that that just wouldn’t happen in Sweden. A feeding tube might be considered for short-term use in connection with an illness or surgery. But not long term, especially not if the person was severely disabled or had dementia.
Then it was the Japanese who were puzzled. “You mean, you just kill them?”
“Well, yes. Or, er, no. That is, we let them die.”
I won’t even attempt to draw any conclusions here. This east-west difference has so many layers, so many implications. It comes down to the question, what is a good life? And what is a good death? The answers differ depending not only on which culture you’ve been brought up in, but also how old you are.
A few things circulate in my head when I ponder this challenge to western activity theory. There’s a trade-off in getting people active. For one thing, a frail person who tries to be active exposes herself to more risk. The risk for hip fracture in Japan is a fraction of what it is in Sweden. This can be partly because of differences in the prevalence of osteoporosis, but perhaps also because elderly Swedes feel they have to go out and do the shopping, even after a heavy snowfall, and they have to get that jar off the top shelf rather than ask a neighbor for help. Independence can have a high price.
Living with a neurological condition has taught me that it is easy to overdo physical activity. When I go over my limit, I suffer the consequences for days, sometimes weeks. While muscles can bounce back with a day’s rest, the nervous system seems to take its time. Being surrounded with the mantras ‘use it or lose it’ and ‘no pain, no gain’, it’s taken me a long time to learn where my limits are, and to stop before I feel pain or fatigue.
Jill Boltes Taylor knows about the powerful healer called ‘sleep’. She had a stroke at age 39 and spent the next 8 years recovering. Her book ‘Stroke of Insight’ has a chapter devoted to advice for care personnel (available through Amazon and in Swedish from Bra Böcker). She had to learn the delicate neurological balance between activation and relaxation.
Linda Kavelin Popov was a workaholic until the polio that she had as a child came back in the form of post-polio syndrome. Her book, ‘A Pace of Grace’ is about listening to one’s body, and heart, to find a manageable pace through life.
There are a number of reasons to challenge the universality of activity theory. But tube-feeding? For years on end? I’m going to have to think about that.
September 12, 2010 at 06:36 |
I don’t know how much my attitude is related to the culture I may be associated with, but I will not want to live past the point where I can be of some use to others. Perhaps this arises, in part, from a passage in a book I read during my teen years, ‘Arctic Adventure’ by Peter Freuchen (http://en.wikipedia.org/wiki/Peter_Freuchen). In it, an old Inuit woman stayed behind to die during a long trek over Greenland because her teeth could no longer chew seal hides to make them soft for use as garments. I sometimes tell my wife that I don’t want to be put in an old folks home; I’d rather take a long walk in the woods, by myself. I say all this is while I am able-bodied (at age 73) and not immediately faced with the spectre of Death. I have seen people, mostly relatives, cling to life in the most unhappy and dependent of circumstances. It could be that I will do so also, if my rational mind is not functioning as it is now. As for listening to one’s body, I recommend it. I also recommend taking naps when one is tired.
September 12, 2010 at 12:25 |
Marti thank you, this is so thought-provoking. It seems like it’s all about striking a balance. Very interesting to get the Japanese perspective on activity theory.
I would like to talk to you sometime soon – I’m considering going back to school for physical therapy. !
September 15, 2010 at 21:58 |
This is an issue with so many dimensions that the physics of parallell universes pales in comparision. The past couple of days I spent at a workshop discussing “Trygghet och säkerhet för framtidens äldre” but a significant portion of the discussion always (and despite my diversionary efforts) came back to the topic of “when I get old I want to be able to…” I am sure that when I am old enough to be in the situations mentioned above: infirm, stiff in body and inflexible in mind I will feel differently than I do today. For that reason I think it presumptious to make predictions about how and when I want to cease to be a part of this world. I don’t know, and feel it best to delay making any firm decisions as long as is reasonably possible. Not that the subject is taboo, and indeed it should be discussed with family and others to assure them of ones feelings at least in the present. Uncertainly is generally a bad thing, and unncertainty in a time of emotional turmoil likely to be very bad for everyone concerned.
Apart from culture, religion probably plays a significant role for some in directing one’s attitudes and wishes.
Listening to one’s body is good advice, but listening to one’s mind likely to be better. We often do silly things because the body craves them (smoking, alcohol, sweet and fattening foods…) even though in our minds we know this is not a good idea.
Returning to the topic of tube feeding contra “a peaceful death” by, bluntly speaking, starvation may seem a clear winner to some and “life extension beyond the bounds of dignity” to others. The decision may in large part be taken by a close relative or friend, made with the best of intentions but for entirely selfish reasons. There is no obvious answer other than an inevitable one that economic arguments are likely to become more powerful in the future.
October 13, 2010 at 20:51 |
Very interesting. I believe in Sweden the dying could/should be given more peace and quietness. They are moved from hospital to hospital, this ward, that ward, palliative care for some days, sent back home again with masses of ‘helpers’ running in and out, back to a nursing home, all within a few weeks.
The need of rest you mention is also interesting. This is Margo writing.