Interesting comments by Dr. Kane at the conclusion of the June 9 MAGEC conference:
Consumers don't invent things, they respond to the inventions and ideas that forward thinkers bring to the consumers.
What a powerful thought. I took it to mean that your residents and families may say they are satisfied with a score of 95 or even 100%, but don't think that means there is nothing you should be doing. Bringing forward ideas of how to accomplish quality of life as well as quality of care will be met by consumers with excitement. Dr. Kane went on to say:
We ought to be able to provide reasonable quality of life to people with complex medical problems and geriatric syndromes in an environment that is friendly. The truth is, he said, you can get more complex care at home than in an institution.
That makes a lot of sense to me. If people can no longer live at home, then let’s create home (small, friendly, individualized with lots of choices) where an institution used to be.
"What is culture change?" Dr. Kane asked. He went on to say:
Leaves me to wonder what is the culture that we want to change. There is some misconception going on amongst all of us. Most of the discussion I hear is to how to change the culture of the organization, to give staff greater sense of participation, to rethink the organization's purpose and mission.
The culture that really needs to change however, is in the greater society. Attitudes toward long term care need to change. We need to examine the underlying values within long term care and be sure that they are held across the spectrum of legislators, regulators, surveyors, as well as the investors, corporations and the organizations themselves that shape the care. Culture change won't work one institution at a time.
Dr. Kane then went on to say:
We have a system that just grew up piece by piece. We keep adding on, renovating our processes and policies and practices. And now we’re taking this ill-designed system and imposing culture change on it.
I realize that we are not a field that can tolerate great derring-do, but we must put together a coalition to bring about the real culture changes that we ought to dare to take. Let’s shape an alternative that will replace oppressive regulations.
We need to think about Regulation, Payment, Public pressure, Consumer pressure and market forces. Regulation is a heavy handed tool to chase down malefactors and punish the good along the way.
Can we do away with regulators? We’re not there yet, but why can’t we turn it into a system that rewards as well as criticizes?
Most of us are responsive to rewards.
Then there is public pressure. We have a fairly puritanical attitude, we post the sinners on the website so that people will come out and stone them (by not placing their family members in the facility). But the truth is that the major public pressure barometer would show more apathy toward nursing homes than outrage. In general there is no real public pressure to improve long-term care.
Consumers of long term care are more interested in cheaper drugs. It’s not that they are satisfied with long term care - I would say the opposite – they haven't taken it on because they lack the belief that it is a solvable problem. There are not many Quixotic folks out there.
Could we get a bigger retun on investment to solve the problem in long-term care? We have a stake in it. We haven't worked with the advocates, we should use public pressure to get more money, more action, more resources. We don't truly share the same vision of quality as consumers do.
There are very few consumers who will get interested in cutlure change. Running around having meetings, they would think it's a waste of time.
We don't use the same rationale that someone uses to buy a car. When was the last time Consumer Reports did a report on nursing homes?
Don Berwick, a leader in QI philosophy, developed five questions:
How bad is the system broken?
Pretty bad. It’s broken in a way, comparable to the people who die in auto accidents and yet it is the airplane crashes that get the attention. Five people dying in a fire is somehow far worse than hundreds of people dying of loneliness and despair.
So, how do we reengineer the tools?
First need to recognize that there is a problem. We, as a society, have huge costs supporting this socially undesirable infrastructure called nursing homes. We’re an "industry", and so you would think we would retool in order to compete in the marketplace. But the customers don’t say, "Here are the specifications of what we want to buy." We haven't had a frank discussion about this, but we need to do it.
How do we work together?
We have to have a consensus on goals. Are we trying to improve their lives, take care of them physically? Or create a good life?
There is a dramatic sense of despair. We fear that there isn’t a lot we can do to change things. And alone, that is probably true. But we must give up our adversarial relationships (advocates, providers, regulators, caregivers) and unite. We need to think through the risks, and then we have to be willing to take them.
How can we focus our efforts on people?
We need to recognize the value of caregivers and clients. We need to determine people's preferences. What is it that we are trying to
bring about? A system for people providing care and the consumers of the care.
How are we going to move it forward?
We don't have strong political support. No one has put it on their platforms. Right now, it’s still bad politics to get behind long term care issues. Quality isn't on anyone's agenda. There is the enormous role of mythology. Basically, long term care is what we pretend it is. As a social construct, our thinking and pretending makes it what it is. Don’t believe it. Then why are we investing so much in cancer research when the cancer survival rate hasn't gone up very much at all? And yet we're not interested in long term care, which would have a much greater chance of improving the quality of life.
The answer is mythology. The oncologists have created a belief that just over the hill is a cure. There's that chance. You have a one in a million chance, and you want the chance. So we will put ourselves through the misery of treatment, all because of the myth that it might work! And it might!
This optimism does not apply to long term care at the moment. We have to infuse in our minds first and then help others see it. Good things can happen!
We need new kinds of coalitions. We shouldn't use some kind of long-term care speak. We need to talk in the simplest of terms. And bluntly, until we can do this ... well ... my personal experience is of trying to organize care for my mother, and all the powers of manipulation (as a physician, as a geriatrician, as an academic) I could bring to bear didn't make a difference.
If I can't, what chance does the normal person have?
It’s time for us to work together. All of us have to be more bold and daring than we have been. We need to take steps, come together in meetings like today, educate ourselves and others. Only then can we achieve quality of life for frail elders.
Read more about Dr. Kane’s work as Project Director of MAGEC.
