David Spero
Patient Representative and Faculty
New Health Partnerships
"As a nurse, I took care of people…and as a patient, I’ve had to learn…how to take care of myself." (0:57)
I’m David Spero and I have been a nurse for 32 years. I have been a patient with multiple sclerosis for 20 years. As a nurse I took care of people in a wide variety of settings, and as a patient I’ve had to learn something harder than that, which was how to take care of myself. So for the last six years or more since I wrote my first book, The Art of Getting Well, I’ve been out preaching and teaching and coaching people to make it easier for them to take care of themselves and overcome the barriers to that. It’s certainly something that I always wanted to do. Not necessarily with patients about chronic health — I mean I didn’t want to be chronically ill, I didn’t want to be disabled — but I always liked listening to people and talking with people. I saw myself as being sort of a spiritual advisor kind of person, and also a writer. I always wanted to be a writer. I would try to write, but it wasn’t until I got sick that I found what I had really came to write about. It has been a gift in many ways.
"To quantify the importance of self-care… for some people, it has been transformative." (0:50)
To quantify the importance of self-care, it’s frequently said in diabetes that 90 percent of all care is self-care. I think that applies to most any chronic condition and most aspects of life, too. Now, how important what we’re doing in terms of promoting self-care or self-management, as they sometimes call it — it’s potentially extremely important, and for some people it already has been.
For some people it has been transformative, because you go from a situation of frustration… let’s say a clinician or a patient where the clinician is prescribing drugs and prescribing behaviors, and the drugs don’t seem to help, and you can’t do the behaviors or not consistently. Or even if you do, they may not help, and you go from this kind of frustration to a feeling of having a support, being part of a team and collaborating, and things actually getting better because you start dealing with people’s lives and not just with their symptoms or their lab values.
"The cost of poorly treated chronic conditions is just swamping everybody." (0:45)
The relationships in medicine, especially the power relationships in medicine, mirror the power relationships in the outside society. In other words, there should be a hierarchy, and the doctor should be in charge maybe, or the most educated person is in charge. The person who is most vitally concerned, the patient and the family, is the least empowered in the group. That’s what we inherited. However, it’s so frustrating for the practitioners, too, that I see more and more people being willing to change and being willing to take a chance on letting go of some of that power, and connect with people on a more equal basis and that’s very hopeful. Because the expense, the cost of poorly treated chronic conditions is just swamping everybody, swamping whole communities really, not just health care systems. There is hope.
"There is a virtual community of people in the country, maybe in the world, who are looking at ways to work collaboratively." (1:04)
There is a community; there is a virtual community of people in the country, maybe in the world, who are looking at ways to work collaboratively. So, what I think what this will bring is activated patients, patients who really want to get involved with their providers or with their health care system or want to help change it. It’s a relatively small group, but for those patients I think this will empower them because they will be able to do what I am doing. They will be able to talk to their physician as an equal. A larger number of physicians who thought about something that they should do better, because “this is really frustrating what I’m doing now,” might come and check it out. A certain number of them, hopefully, will get turned on, and then there are others who aren’t ready yet. It’s just like patients, right? Physicians who are in the pre-contemplative stage and really aren’t convinced that there’s a need to change, they’ll probably just go, “That’s not for me.” But there are more and more people that have moved to the next stage, contemplative I guess it is, or preparing stage, they will find it useful, and I think everybody at any of those stages other than the least interested is likely to find things that will help.
"If you can empower people around something like diabetes self-care or something, then it can affect them in other ways." (0:59)
My view is that health care in total probably accounts for less than 20 percent of health outcomes, and most of the rest of it is in society and the environment; yet, health care gets an extraordinary share of the resources. So we need to do something positive with those resources, and not just be part of the problem. I do think that the work that we’re doing in New Health Partnerships can have implications and impacts outside of the health care system. The people who tend to get chronic illness tend to be people who are relatively low-power people and that’s why they get sick in the first place. So, if you can empower people around something like diabetes self-care or something, then it can affect them in other ways. I have hopes that it will move in that direction: having the sense of self-confidence and self-esteem and caring about yourself and having positive goals and reasons to live. I think that’s what this kind of practice does. I think it’s quite possible that over some time that this will become the norm.
01/22/2007
