by Judith Peres, LCSW
Howard Gleckman in Forbes online (http://www.forbes.com/sites/howardgleckman/2012/10/24/long-term-care-a-forgotten-issue-in-the-presidential-campaign/) rightly states that long-term care and the needs of citizens with serious chronic conditions and functional limitations are not part of our current Presidential debate.
There are an estimated 10 million Americans with long-term care needs. The amount and quality of long-term care/palliative care/hospice received through their illness trajectories varies tremendously, as do their unmet needs near the end of life. Studies consistently demonstrate that patients with advanced illness and functional decline experience untreated pain and other symptoms; lengthy hospitalizations involving unwanted, often low-yield and costly medical treatments; and low overall family satisfaction.
The current national dialogue about the need to reform the health care “system” includes recognition that the population is aging, a changing trajectory of illness for Medicare beneficiaries, advancements in high-tech life support systems, limitations in health care resources and issues surrounding patient autonomy and the right to a dignified death. However, for the most part, the development of the new chronic condition models tend to overmedicalize the services delivered and do not acknowledge the knowledge base developed over three decades of long-term care and palliative care research on how to manage this population.
Recent studies suggest that medical care for patients with serious illness is characterized by inadequately treated physical distress; fragmented care systems; poor communication between doctors, patients, and families; and enormous strains on family caregiver and support systems. Although most of the years after age 65 are a time of good health, independence, and integration of a life’s work and experience, eventually, most adults will develop one or more chronic illnesses with which they will live for years before death. These years are characterized by physical and psychological symptom distress; progressive functional dependence and frailty; and high family support needs.
What, exactly, do we need? More than anything, we need programs that support family caregivers, those individuals who provide an estimated $450 billion dollars worth of care for older adults. We need hospice-like wraparound services that would help people from the time they are seriously ill or disabled, and that offer home care services, respite for our caregivers, and supports for what we can no longer manage or cope with on our own. We need social structures and public policies that support families as they live through years in which they simply cannot piece it together on their own.
As a country, we’ve done a remarkable job of creating a health care system that does well at treating acute problems and curing much of what ails us. But that system, with all its fragmentation and problems, is simply not one that is going to be able to serve our aging population. At Altarum Institute Center for Elder Care and Advanced Illness, we believe that doing so will require fundamental changes in how we see and care for these individuals–and that it will require sweeping changes in how we organize and manage that care. It will require a real blending of social supports and medical services. It will require comprehensive care plans, and an array of services ranging from transportation to home health to hospice. It will require local levels of management, with the authority to channel resources to meet locally identified needs and priorities. It will, indeed, take the whole village to solve this problem.
key words: presidential election, Medicare, older adults, public policy