A couple of weeks ago I published an article titled “Bill Thomas Says I Am an Abolitionist”. This article spawned an almost immediate response/rebuttal, “All The President’s Men” by Martin Bayne at the Bill Thomas Changingaging.org website.
In that article Martin accuses me of two things:
- Launching a ‘full frontal attack’ on Bill Thomas. You be the judge, but I don’t see it as a frontal attack and it wasn’t intended to be that.
- He then suggests that I have some sort of secret backroom relationship with the industry that makes everything I write suspect and that somehow I should be “investigated” Watergate fashion. Really a pretty funny assertion because the partner sponsors of Senior Housing Forum are easy to spot. In addition I am openly pro senior living. No investigation needed. I admit it.
This all leads to an article on what I like about the person-centered care movement and what bothers me.
What I Love About Person-Centered Care
As a concept, person-centered care has become main stream. You find it in CMS regulations and guidelines; you find it referenced at most senior living conferences. Most senior living providers, in one form or another, say they are doing person-centered care.
How can you not love the idea that residents should be in control of their own destiny; That they should be able to choose how they live their lives in skilled nursing facilities and assisted living communities.
And yet . . . if you were to talk to just about any person-centered care advocate, their own assessment is that after 20 plus years of flying the flag, true adoption of person-centered care is low, which brings me to my struggles with the Pioneer Network/Person-Centered Care movement as it exists today.
Their Own Worst Enemy
In my view, the person-centered care movement as it exists today is their own worst enemy. Here is why:
- My Way or The Highway – At last year’s Pioneer Network, one of the keynote speakers (not Bill Thomas) delivered up one of the harshest, mean-spirited presentations I have ever heard at a senior living conference. He attacked every single provider/person who was not doing person-centered care they way he thought it ought to be done. He had zero grace for people who were doing some things but not everything.It played well to the audience, but at the end of the day served to create an “us and them” mentality that is not, helpful in moving the bar. I found this attitude to be common (though far from universal) as I interacted with people at the two Pioneer conferences I attended.
- Smugness – I want to be very careful here. I have a number of friends who are deeply embedded in the person-centered care movement that are in no way smug. But overall there is a sense of superiority that turns people off. Martin’s article is a great example of this. He attacked me because I suggested that Bill Thomas did not have it entirely right. I probed, asking him to explain what part of my thinking he actually disagreed with. So far, he has not answered that question.I am not sure he actually even considered what I wrote. As near as I can tell once he decided I was the enemy, he quit considering my point of view. The person-centered care people may be 100% right, but no one likes smugness. It is one of the surest ways to make sure no one will take you seriously.
- They Don’t Really Want Change – The worst thing that can happen to a crusader is getting what they want. Crusaders love an audience. They love being riled up and riling up like-minded individuals. The problem is that if they get what they want, the crusade is gone and their reason for being evaporates. This requires finding another good cause or retiring, both of which are hard to do.
- It Doesn’t Go Far Enough – I have no problem at all with the fundamental principal of self-determination for elders in senior living setting. The problem with it is that it is still a cruise ship mentality. You move into my senior living community and whatever you want you get . . . unless of course it is to do something for someone else.Sounds good at first, but there is much data that elders do better when they are provided opportunities to continue giving. It can be in the form of volunteering or continuing to work. It is not in being entertained until they die.
Now waiting for Martin’s Rebuttal Part Two.
The attitudes of attack and counter attack – between groups who want positive changes -and should be allied in the work to generate change – remind me of arguments among the left in the late 60’s, and among feminist activists in the 1970’s. And it reminds me of the US Congress through the past few years. Holier than thou is just exasperating. In order to accomplish something, when working against the odds, you work with others, seeking to build using what you do have in common.
A commenter – Richard Gelula -spoke of concrete changes that many residents want ( almost everyone who can speak wants them in the nursing home I am familiar with): better food;, more responsive assistance when needed; privacy which ideally translates to your own room – and the ability to close your door to others. And for those who are in some level of dementia, what I see is that they do not receive the kind of attention that would alleviate discomfort and occupy them — because staffing is cut to the bone. There are experience and training issues with staff – but that would be a welcome task if staffing was adequate.
AS someone who wants to support innovative approaches to caring for the elderly – the fragile elderly – I would welcome some clear and specific ideas about legislation to seek to support a different mode of care – but that won’t be used by for profits as loopholes to further reduce staffing levels for all those who will be in those situations.
Hello, I am a student currently taking AGNG 200 at the Erickson School of Aging!
I think that Person-Centered Care needs an revision because what I see is some sort of biased and ironic.
Agree with you Bill. I have come to believe that you cannot change a culture; it must be replaced. That is why it is a “culture.” Imagine trying to change the culture of Cajun Louisiana or, Catholic Rome. Systems attract the kind of people, policies, and beliefs that perpetuate the system. Duke basketball will always attract the kinds of players that perpetuate the system and culture that has made Duke a perennial basketball powerhouse. The current long-term care system attracts people who are satisfied with the status quo and accept mediocre, at best, results.
I agree Person directed care is not the solution it promisses to be for the reasons Bill outlined. I thought we moved on. The new movement is about Participatory Care. In this model thre is mutual respect. The ‘clinician’ is the subject matter specialist who “coaches” the person to make the right decision about their health and wellbeing. The questions asked is ” what is important to you?” Rather than ” what is wrong with you?”
The health 2040 movement.
Yin, great comments. “Patients” know their bodies and should not just surrender care decisions to care professionals who are true experts still know the individual’s body and mind.
We need to hear more from consumers and residents. Much discussion is too abstract. People I know want very practical things: better, more varied food; responsiveness; kind interactions; respect. Consumers should be able to expect competent care. At Consumer Voice, we think there need to be more staff in nursing homes and higher standards and requirements for training, particularly for dementia care. Those are specific objectives. In reality, many providers will only add staff and training time if required. We are pushing for changes in law and regulation to achieve that. Finally, what is missing most from long-term care is education, particularly education of consumers and their families. We want to hear more about the community-wide “Pittsburgh” planning model that Bill Thomas is promoting. We’ve got to do things to give the consumer a fighting chance in a “game” that unfortunately is very tough and offers too many opportunities to lose.
As we’re disrupting aging, let’s get the community involved. I’ve seen important changes happen with regular, meaningful engagement with the residents in an assisted living home nearby. I want desperately to organize a one-on-one matching that will pair seniors with neighbors who have common interests. Making people accountable to one or two specific seniors would deepen the connection and create a family-like relationship. That would also create a truly person-centered solution that activities directors can’t manage within the current structure of their responsibilities – which does not even include individualized activities and interests – just what would work for the group.
I will someday transition from my corporate life to senior living…and the meantime want to join the team to disrupt aging!
Elaine, While it is admirable that you seem to want to help folks create genuine friendships through matching, please know that group involvement and activities bring people together to form natural one on one friendships, with people who have common interests and even with those who don’t, who just feel a chemistry even if differences are present. I have seen it happen with many, many people, many more than one on one matching ( which isn’t a bad practice just a more fragile one). Just as most people form lifelong friendships and even romances from school, extracurricular activities, workplaces,interest groups, etc with those they jibe with. The same happens in older adult settings.
We have done a significant amount of Person-Centered Planning (PCP) the past 2 years for adults with cognitive disability, and while it can be a useful and valuable tool, if used correctly, it’s not THE end all to be all. The organization’s toolbox needs lots of other tools also. During the past 35 years I’ve seen lots of industry buzzwords come and go, PCP being the latest, though it’s been around for 25+ years. Unfortunately, people are often looking for THE answer, and while PCP has strong merits, it’s often used more for marketing purposes and not true systemic organization change. It’s valuable as a tool, but it’s not the total toolbox.
I really appreciate Steve’s thoughtful engagement with the issues. The fact is that some extremely talented people spent a large part of their careers trying to move the system toward person-centered care. There is still a very long ways to go and the question is why? If the ideas are good and the people who are working to advance those ideas are good shouldn’t person-centered care have simply won the day?
Personally, I think a fundamental flaw was present at the inception of the movement. The stratetgy of asking nicely for incumbent providers to consent to changes that are difficult and carry uncertain financial rewards is a mighty tough mountain to climb.
Sometimes I wonder– should we have embraced the work of building a separate person-centered system from the start and simply bypassed the two decades spent trying to change the status quo.
What do other readers think???
As difficult and frustrating and sometimes unyielding as the work is, I think there can be no other path but forward. While an alternative system could be created for some, without the constant pounding of advocates those left in legacy nursing homes would undoubtedly experience more pain and less joy.
I don’t think we should continue to ask nicely. I think, as you have suggested, we should push regulators to close down unresponsive homes (or, rather, ban unresponsive operators, as, at least in an interim, some elders would be worse off without any place at all). We should push legislators to change payment models that reward and sustain the current system. We must rethink Medicare and Medicaid that dumps billions of dollars into environments that most would not willingly choose, but doesn’t fund the lives that most would agree should be available to our elders. We should push consumers and children of elders to demand democratic, engaged places to live that not only are possible, but already exist in places. And finally, we should create more opportunities for dialogue, engagement, and learning so we can waste less time recreating wheels and more time fixing these seemingly intractable challenges.
Replying to Bill Thomas’s question above, as a 60 year old who studied Gerontology for 2 terms and the school of life as my mother lived in a facility for dementia for 7 years. And as a retired pharmacist who spent much of her career working for large organizations.
Since most of the large residential facilities in the U.S. are owned by corporations and are not non-profits, I would propose incorporating person centered care as a separate concept with the building of new facilities.
I toured a number of facilities as a Gerontology student intern and to try to place my mother. The few facilities I found with person centered care were by far the most expensive, and mostly, but not exclusively for profit.
With the huge number of baby boomers retiring I keep wondering why someone doesn’t come up with a model for non profit, person centered care to accommodate the generation who came of age in the 1960’s and early 1970’s? And if the person centered care was incorporated as a non profit it could be more democratic for participants, and possibly more affordable?
Respectfully, Mary Hill, Portland, OR