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by Joanne Lynn, M.D.
Usually, when someone finds that I work on "end of life" issues, one of the first things asked is, "Isn't that depressing?" That's hard to answer. It has never seemed depressing to me to give people back what is left of their lives - to relieve pain, assuage anxiety, and to share in the near-miracles that are the ordinary work of people who help those coming to the end of life. It has never really seemed depressing even to help a family caregiver coping with serious long-term care challenges. I will admit to bouts of abject bleakness when confronted with the intransigent abuse of benighted public policy, or the bland and banal inertia of professional care providers who cannot find the wherewithal to change habits that don't serve patients and families well. For this reason, I'm encouraged to report on two happenings that promise to deliver real and sustainable improvement.
First, the work of quality improvement for those facing serious chronic illness is finally taking root. The Center for Palliative Care Studies (where I work) has set about recruiting a few dozen teams to tackle new sets of problems in a National MediCaring Quality Improvement Collaborative (see http://www.medicaring.org/nc2004/). This is the work that led to Improving Care for the End of Life, our book to support quality improvement (now available in its entirety on the web at http://www.medicaring.org ). If we can find a few dozen forward-looking teams, we'll all break new ground together. Diane Meier of the Center to Advance Palliative Care; Meg Campbell, who has led inpatient units for post-ICU palliative care; Mark Kator, whose Isabella Nursing Center is a leadership nursing home in palliative care; and Perry Fine, who anchors many endeavors in pain management and hospice care, (including VistaCare) will be our expert faculty. If you know of a clinical team with a service quality problem, whether it's engaging clients in Meals on Wheels or preventing skin breakdown during hospital to nursing home transfers, tell them about this project. That team will learn a lot - and solve a few problems - by working with us for a year.
Medicare services for the very sick are also sponsoring major work in quality. The QIOs (Quality Improvement Organizations, one for each state) have a mandate to improve nursing home quality (Home care and hospice are upcoming topics.) This national work will engage all nursing home chains to work on preventing and relieving pain; another three score nursing homes (and all of their QIOs) will engage in a national collaborative on preventing and healing pressure ulcers. Every QIO in every state must work with its nursing homes this year and show real improvements in the Nursing Home Compare measures of quality. (For details, go to http://www.medicare.gov/NHCompare/home.asp ).
Other exciting endeavors are also underway - with a focus on real change, not just "continuing education" or standard-setting, which have not proven to be particularly effective in changing practices. Providers are learning how to actually improve things - and learning both how hard it is to change practices and how rewarding it is to see real improvement. An on-line conversation about improvement has been set up at: http://growthouse.net/~medicaring/. If you are initiating a quality improvement project or looking for help on one, join in the conversation there.
Of course, no single provider or program can address every problem people face as they come to the end of life. Major solutions will only come through changing some aspect of public policy, including Medicare or Medicaid. For years, other than the important endeavor of establishing and defending hospice, very little was "on the table" for reform in federal payment, regulatory, or coverage policy. Indeed, in the last Congress, the only take-home message was that very few bills addressed issues central to continuity, coordination, comfort care, or caregivers. This term, though, some better possibilities are cropping up. First, the prescription drug bills have some provisions that would endorse major innovations, though the bill itself may be unwise with regard to prescription drugs and Medicare "competition." The chronic illness provisions vary a good deal, and it is not clear what will come out of negotiation, but the provisions might establish the opportunity for managed care to focus upon the very sick, for physicians to bid for regional coordination of care contracts, and for care management to have a billable fee.
In addition, many bills to improve the lot of family caregivers are circulating (see sidebar for more on The Living Well With Fatal Chronic Illness Act of 2003), and the Veterans Administration is likely to be handed a responsibility to provide comprehensive services (yes - including nursing home) for all veterans with 50% service connected disability.
The situation is promising. What we need now is for every provider to set about improvement activities in his or her own setting - and for everyone who will ever have a serious chronic illness (that's all of us) to get to know his or her Senators and Representative in Congress. It really matters to do both things. We need to show up at political events (for all parties!) and be sure that our issues are heard. If you find this interesting, and I hope you do, ABCD has a renewed on-line conversation on policy at: http://growthhouse.net/~abcd . Please sign on and let us know about your encounters with politicians and policy. Creating political awareness would be reason for optimism for us all!
