Some will say that surely we know what is wrongdoctors don't talk to patients, they won't listen when patients try to say what they want, pain is mismanaged, and bills pile up. Surely those are some of the problems, of course. But are they truly the best description of the problems? We have such profoundly inadequate information. We have, for example, no answers to questions such as these:
One major shortcoming has been that the research has almost entirely focused on pain control, almost entirely with cancer patients, and almost entirely with fairly young patients (median age is rarely past 65). Since most of us have other symptoms and concerns, die of other diseases, and die older than 75, the research base is at the least thin, and perhaps is actually misleading.
Another shortcoming has been the lack of commitment to studying innovations. Hospice has had almost no evaluation (none that compares it with other approaches on similar patients, for example).
Now that virtually every state is setting up a "blue-ribbon commission" on the status of end-of-life care and how to improve it, I find myself urging them to start with simple epidemiology. Take the last few hundred death certificates and follow back to describe the story of what happened to patient and family. Get some basic descriptive data! Then, the commission can judge which shortcomings in care are commonplace or severely adverse to patients and families and warrant prompt interventions. Then, too, the state can know eventually whether the improvements that are tried prove to be effective. My guess is that this sort of exercise would probably lead us to working on continuity of care and protocols for ambiguous situations, rather than mostly on legal advance directives or intractable pain laws. But I don't really knowand neither does anyone else.
Research is needed in so many directions-better drugs, better service delivery, better understanding of what it would be to serve a population really well. Many who work with the dying are deeply opposed to "using them as guinea pigs." Virtually no research on symptom management or on service delivery has taken place in hospice settings, for example. Often, patients and hospice providers alike are fleeing from the "Phase I Drug Trial" mentality of some cancer centers. The time has come to put this problem in perspective too. One can turn one's back on some chemotherapy research and still promote service delivery research, or symptom management, or spiritual support intervention evaluation.
What can we do?
This short list offers a starting point for researchers willing to begin the work now that is so needed for the future.
<<< Previous Next >>> [ Go Up ]