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"What People Like Us Need is Love"

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by joe angelelli
Posted on Tue Nov 21, 2006 at 07:15:02 PM EST

The PBS Frontline series aired "Living Old" just now. It offered a stark look at the realities of frailty and caregiving, while illustrating the limits of modern medicine.

I recommend reading some of the comments by the health care professionals interviewed in the documentary on this page, like this one with Dr. David Muller, Dean of Medical Education at Mt. Sinai Hospital:

But I feel like there's something more to not wanting to be in the nursing home. There's a sense of being marginalized and, as you said, being stored away somewhere, out of everyone's sight, even if it is a relatively nice place.

It's interesting that you mentioned it, because I realize as I think about it that I spend at least half my time, when we have students with us or residents, at least half the time on every visit, before we walk in, preparing the trainee by telling them the story of the patient. The story, of course, includes their medical diagnoses and the surgeries they've had and the medications, but also some precious little pearls about who they are or where they've been and what they've done, and they're an artist, and World War II -- just all these little stories that help create a context for the student walking in and seeing someone for the first time.

It doesn't exist at all in nursing homes. It doesn't exist at all in hospitals. Who the hell has time to ask those kinds of questions? I think a lot of patients are willing to trade off some cutting-edge medical care for the sake of that human contact.

I think the documentary succeeded in showing what frailty really looks like, and in forcing the viewer to confront things we might all rather not think about. But after watching it I can't help but think, is that all there is to look forward to? The fear of institutional life and the fear of not being known -- either to others or to oneself -- is a powerful thing. How do we confront those fears, other than by creating an alternative reality one step at a time, where the concept of "institution" is replaced with home and a sense of being known.

There will be a "Live Chat" with Miri Navasky, the Producer, Writer and Director of Living Old on Wednesday, 11am EST on the Washington Post site.

This exchange between two residents brought a smile to my face:

1st NURSING HOME RESIDENT: What people like us need is love.

2nd NURSING HOME RESIDENT: I wrote to the maharajah, and I printed it up in the page so they will see it out. You don't have to worry. I don't have to— they don't even know it's me. I just didn't give them my name. I gave them another name.

< Culture Change in the Business Press | Live Blogging the CEAL Quality Summit >



"What People Like Us Need is Love" | 5 comments (5 topical, 0 hidden)
Living Old (4.00 / 1)

I watched the Frontline presentation with my Mom who   is 80 years old.  She found it rather boring and focused not on living but on frailty.  She dozed off during the program a number of times.  She found the whole thing pretty discouraging.

I found the presentation overly medical in its orientation.  A number of the people who were shown were surviving through aggressive medical therapy rather than genuinely living.  

If one wants to know about living old it is probably best not to spend most of the time with physicians and a home health nurse as they make their rounds.  THese people are learning about living old by caring for disease.  Why not spend time in a day program for older people and talk with the people who come there and who work there.  This is a place where living occurs even among people with some dependency.

There were some nice moments in the presentation, but on the whole, one comes away thinking that these old people are a real problem.  I prefer to think of elders as having a lot to offer and having the potential to save the world.

Pat Murray, MD


by pkmurray on Wed Nov 22, 2006 at 07:07:36 AM EST
thought that too.... (none / 0)

...but the good news is that the writer/producer/director mentioned on the Washington Post chat today that Frontline is considering how to "keep on the story" and do follow-up features.  So perhaps with a little encouragement they can be convinced to consider more people genuinely living, and what is being done to promote such practices.

But the Frontline series certainly has an investigative edge to it, so I'm not sure how they would go about framing a more positive story.  

In my opinion, there's this disconnect between what people are hungry for -- focused attention on the issues and clear information about what "solutions" are out there -- and what our current media landscape is accustomed to providing.  

I think what we really need is a documentary about the culture change movement in broad terms that is explicitly tied into the actions of the movement and state and local coalition work.  So in other words, we need a very well thought out outreach strategy that looks more like a grassroots campaign than a one-shot media airing.

We took steps in the right direction with Almost Home, now it's time for the next generation of that, with clear methods (and resources) for everyday citizens to get involved to push for real change.


by joe angelelli on Wed Nov 22, 2006 at 06:25:53 PM EST
[ Parent ]
Culture Change Movement documentary (none / 0)

I definitely agree with Joe on this.  The documentary also needs to show specific examples of Culture Change with a variety of nursing homes and assisted living facilities both used as examples.  It needs to include something in the way of answers to the following "why we can't do it here" positions.
  1.  But that's just one wing, a small unit. We have 4 (5) (6) floors with 200 (400) (600) residents.
  2.  But we couldn't do that because of our acuity levels.
  3.  But our mortgage and general finances wouldn't allow us to do any of this.
  4.  But we have too many people on Medicaid to do anything like this.
  5.  But "the state" won't let us do it.
  6.  But "Corporate" has it's own plan and this isn't a part of it.
  7.  But without uniforms, we all look alike and no one can tell who's in charge.

And from the residents and families,  
     8. "It looks like pie in the sky to me.  We could never get them to do that here."

Of all of them, the last is the saddest and maybe the truest unless we provide strong visual answers to the first 7.  Or, just maybe, until we can find a strong visual answer to number 8 that says "Oh yes you can and here's how!" and take it nation wide.  Yep, that might just be the ticket.

Kate


by kate ricks on Sat Dec 16, 2006 at 05:48:30 PM EST
[ Parent ]
visual answer (none / 0)

Great list Kate.

In terms of number 8, I think part of the issue is this: "we could never get them to do that here."

More than any single person-directed care practice, this is about building community to sustain the practices (and that includes family members and the broader community supporting the transformation).  To me, community is the opening between the family and the decision-makers in the organization.  That's where the conversation must begin.


by joe angelelli on Sun Dec 17, 2006 at 07:30:14 AM EST
[ Parent ]
Living Old: Reply to Joe and Dr Murray (none / 0)

I saw the show and agree with Dr. Murray's mother that it was depressing and overly focused on dying. Perhaps useful to see, nonetheless.

Dr Murray wrote:

"I found the presentation overly medical in its orientation.  A number of the people who were shown were surviving through aggressive medical therapy rather than genuinely living."

I do agree; yet in defense of the presentation, and the current medical model, as well, it might be problematic to "genuinely live" if you are succumbing to a life-threatening disorder...

My ongoing work involves creating opportunities for myself and others to listen to, record, and archive Elder's reminiscence and life review. When done with authenticity and sensitivity to issues of confidentiality, this (really sacred) work can be live-changing and enhancing for both the Elder, and those who are priviledged to learn some of their stories.

I also agree with Joe that culture change needs to happen one person, one institution, and one community at a time, in a "grass roots" kind of way. It will take time; but we ought to get started soon...And many people, like Dr. Bill Thomas (Eden Alt) are currently showing us the way.

-Charlie Macknee


by charlie on Sun Nov 26, 2006 at 04:14:16 PM EST
"What People Like Us Need is Love" | 5 comments (5 topical, 0 hidden)
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