By Mike Koetting June 4, 2018
As I noted in the last blog, I am skeptical that we can save a lot of money at the end of life. If that is our primary goal, I think we are likely to be disappointed—and might well wind up further reducing quality of life. I believe the goal should be improved quality at the end of life without spending more. That may be attainable. Not that I have neat solutions that would readily translate into a compelling legislative program. Rather what I am seeing is two, kind of fuzzy thought clouds, in which various approaches reside. These can be summarized as encouraging different attitudes and more aggressive palliative care.
Better Approaches to Death
This is hardly a new thought but more a reminder that we need to do more. For all the talk about end-of-life directives, less than 40% of adult Americans have completed them. I am not sure it is the actual document that makes so much difference. I believe it is more the conversations that happen around completion, particularly among families. The end of life experience is much different when all the children know ahead of time what are their parents’ wishes and have had opportunities to discuss.
There is pretty good evidence that this issue—although in some ways the ultimate personal issue—is significantly impacted by the community framework. La Crosse, Wisconsin, for instance, made a community effort starting 20 years ago to encourage conversations. All the health providers participated and it went so far as billboards encouraging people to talk about this while they were still able. By 2010, 96 percent of all the people dying in La Crosse had an advanced directive.
Part of the message from La Crosse, and other analyses, is that provider norms and practices have material impacts on care at the end of life. As in most other specific medical practices, even within “established norms” there is room for variation and providers develop local norms for action. A determined, public health initiative to change end of life practices is more likely to have more impact than any fiddling with benefit packages or reimbursement mechanisms.
Dina Keller Moss has suggested that we will know we have made progress when physicians regularly give what she calls the equivalent of a Miranda warning for patients facing terminal illness: “You are not required to accept treatment, and if you opt to decline it, a palliative care doctor will be proved for you who will ensure that your pain is fully and effectively managed.”
Palliative care has become the new code word for what we hoped from hospice. There are all kinds of proposals for making palliative care more systemic, and these should be evaluated.
I think just as important as any specifics is the potential power of the overarching concepts. The typical definition of palliative care focuses on effective management of pain. But I also want to make sure people focus equally on the slightly broader definition that includes the management of quality of life, which includes many things beyond medical care, particularly including coordination of services. This quality management needs to start before the immediate onset of death to establish meaningful relationships with patients. Remember, I believe hospice didn’t have the desired impact because it required people to give up everything familiar and put their death in the hands of an unknown entity.
What I am suggesting is more difficult than simply adding one more service on top of existing services. Add a new service and people will appear who are willing to provide it. While these may be worthwhile services, they further fragment care. (The history of the hospice movement is instructive: hospice care started out as a grassroots, volunteer-based movement and, over time, has become big business, with 6,100 hospices, the vast majority of whom are for-profit. I am not sure what to make of the fact that we are now seeing for-profit palliative care companies, including one just bought by Anthem.).
But if we are going to provide affordable and reasonable quality care at the end of life, we must come up with ways to provide coordination and pain management. Since, as is becoming clearer, these two are linked, we need structures that consolidate fiscal and clinical responsibility as early as possible and make sure it continues through death.
The need for coordinating patient care is widely accepted. One approach is to encourage managed care; almost 40 percent of the Medicare population is now in some form of managed care. The jury is still out on how good a job traditional managed care does actually coordinating care. As complexity increases, the amount of personalization required increases and traditional managed care organizations are often less flexible than necessary. Additionally, as profit-making entities, managed care organizations are sometimes even more unwilling than Medicare to make upstream investments without short term returns. But leaving patients on their own has not worked particularly well from either a cost or quality perspective. So, in the absence of other specific alternatives, continuing the movement to managed care is fine, as long as we monitor carefully.
One thing that clearly needs to get fixed is that when patients opt for hospice now, they are transferred to hospice and the managed care entity’s clinical and financial responsibilities end. This completely disrupts continuity which really needs to be one of the underlying principles. This problem is recognized and demonstrations to address this are under way.
Pain management has a technical component which is easily understood, though not always easy to deliver. Among other things, there are difficulties in making sure there are sufficient provider resources oriented and trained to provide the kind of care needed. At present, most of palliative care resources are in hospitals, but extension of these services into the community is crucial.
Integrating pain management into the course of care for people approaching the end of life will also be policy-challenging. Palliative care will be most useful if it lays the ground work by involving patients in their treatment choices as far upstream as practical and establishing trust by competent responses to those choices. While maybe on the road to dying, patients are still alive and will develop confidence and trust to the extent their immediate needs are met. This will include incorporating all the various types of care necessary to respond to conditions that might not be as neatly dichotomized in terms of service sites as the hospice benefit tries to do. The boundary between “curative” and “palliative” gets gauzy, particularly for patients with multimorbidity. This raises understandable concerns in terms of aggregate spending about whether patients will make the choice to forego some intensive care at the end, which is what would make up-front services affordable.
Medicare has begun to recognize these issues and has recently launched a “Choices” model that includes some coordination of hospice benefits with active treatment models. Results will not be available for several years. On its face, however, the program seems less robust than the kind of more inclusive supportive services that might make a material difference in patient perception of the degree to which services were integrated around their needs. Without those surrounding supportive services, I don’t know whether people approaching the end of their life will have the trust to forego more intensive services.
The above, of course, is more an outline of the challenges facing true palliative care than a policy recommendation. All I can really suggest is that we keep experimenting with various models until we find some that allow people to have the trust and wherewithal to forego intensive services. All of these will require spending on other services, and we will probably have to take some risk to provide those services in hope they have the desired impact. But with a tsunami of Boomer seniors heading into their 70’s, we need to get some traction on this issue. Now.
NOTE: For those of you particularly interested in this topic, I would call to your attention two excellent posts on this topic, one by Vincent Mor and one by Joann Lynn, two thoughtful, longtime observers and advocates around these issues.