(Last month, Dr. Lynn described ways in which the care system could be improved. This month is the conclusion of that column, which can be read on the web.)
What else is needed for real change? There need to be some “local gems.” These are local programs whose care of the very sick is “newsworthy” and becomes widely known. This is the leavening that helps all concerned to believe that change is possible and desirable.
There also has to be a general ferment, in which most providers expect and desire change. This is harder to assess, but I am convinced that some caregiver environments are much more rigid and suspicious of change itself than are others. Sometimes, after giving a talk, I am convinced that just about the only thing that got across to the audience was that they could not reasonably want to continue to do things as they have been. That is a hard idea for many people. We all think that we are good people trying hard to do what is right. It is sometimes painful to confront the fact that we have been a cog in a wheel that is running amok!
We could usefully organize ourselves around three trajectories of how life is lived at the end. One would be for those who die with a classic “terminal illness” course--with good function until the last few weeks or months, and a final, observable downward spiral near death. This is the trajectory that hospice was built for!
Then there is the way more of us die: a long chronic illness and a short final event. This is the trajectory of heart failure and emphysema, for example, with unpredictable timing of death but substantial disability for many months. In addition, the bulk of care is “medical,” with training for self-management, medications, and advance planning as core services.
A third approach would be for those who die with frailty or dementia as the dominant condition. The timing of death is, perhaps, a bit more predictable than in the second trajectory, but the course of decline is ordinarily remarkably slow, and the services needed are more often those that provide for cleanliness, food, and safety, rather than “medical” issues.
If our population-based entities (like health planning boards or public health officials) claimed responsibility, they could organize their thinking to ensure that these three trajectories were well-covered. My guess is that virtually no family or patient would be left out. If these organizations encouraged some “local gems” and a good deal of local ferment, we could see remarkable rates of improvement--across regions. Then, caregivers could start making promises that matter! If you think a local authority can be built in your area, invest in that opportunity. Let us know about it and what we could do to help! This may be our most promising avenue toward substantial change—and change that patients notice.
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