Many reformers have acted as if the shortcomings in end of life care are largely the result of physicians who won't talk about or patients who won't deal with the possibility of death. ABCD has long claimed that fixing these problems would not be enough. Instead, we have pushed to expand the scope of the debate to include reforms that ensure appropriate services for people with long-term serious illness, ending in death. ABCD does support efforts to train nurses and physicians, and we work hard to provide information to the public about personally challenging issues in end of life care. However, our priority has been to focus attention upon how the very structure of the care system needs to be re-engineered. It is not enough to argue for patient choice when there are no good choices. Indeed, at times it seems more important to have one good option than several poor options!
Our "Promises to Patients" has become the backbone of our mission - can we make the care system safe for dying patients?! It is bad enough to have to be sick and dying, surely we should not also have to fear our care system. Continuity and comprehensiveness are central to a better care system, as are symptom relief, family support, and planning ahead. Appropriate reimbursement and staffing arrangements would make it unlikely that any provider organization would aim to provide merely episodic care for patients with long-term serious illness.
On the way to this good end, we believe that we need to establish a category of patients that who are "seriously ill with an eventually fatal condition." These are the patients who are sick on an every-day basis and who, in general, will get sicker through to death. Most are not "terminal" within the hospice definition, and very few are eligible for home care under Medicare (because they are not homebound or do not have a skilled need on the usual day). Yet, most of us will spend many months, even years, in this state. This could be "good time," with comfort and meaningfulness. But now, too often, it is a time of terror. Will anyone care? Where will I live? Will I run out of money? Will the suffering be awful?
So, ABCD aims to get this category established in federal law and regulation. Only then can we target this group with appropriate payments, quality standards, and other policies. We also aim to engender substantial support for family and professional caregivers. At the least, family caregivers need training, financial support, and respite. Professional caregivers, especially nursing assistants, home health aides, and nurses, need career ladders, respect, and a supportive regulatory environment.
ABCD also aims to reform Medicare. Undoubtedly, Medicare needs to pay more for continuity (and less for episodic care), to base coverage on quality, and to support palliative care. However, except for some small things, the evidence is not yet clear as to which reforms are likely to work well and efficiently and which ones will also garner the political clout to galvanize public opinion. Thus, we aim, in the short run, to get federal agencies supporting widespread innovation and evaluation.
Let's use the next few years to learn what really works. Let's try out comprehensive capitation more broadly, and care management, and expanded hospice, and a dozen other creative possibilities. Then we can use this information to galvanize public and professional opinion. One key step may be to get Congress to ask HRSA (the Health Resources and Services Administration) to launch major initiatives in end of life care, just as they did for AIDS under the Ryan White act. Congress can ask AHRQ (The Agency for Healthcare Research and Quality), the Department of Veterans Affairs, The Centers for Disease Control, the Department of Defense, and the National Institutes of Health to make it a priority to learn how to provide reliable, effective, efficient care for this population.
We are in the midst of building a new care system for the very sick; yet we have far to go. We are so glad that you are supporting this work. Please sign on to our web-based conversation by going to our website www.abcd-caring.org and clicking on Online Conference. Share your good ideas, your experience, and your advice. Contact your elected officials and professional and civic leaders. Be sure that they begin to get the problems of the very sick onto their list of priorities! And join ABCD, and get others to join. We are only as strong as our members. Together, let's make this new millennium safe for living, even when a person very sick and coming to the end of life.
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