  |  | | Lighting the way to home-centered health care | By Mike Magee, MD
In my discussions on establishing a truly preventive system of health in the United States, I have frequently discussed what I call a "parallel build-out." This refers to the challenge on the one hand of better managing the existing burden of chronic disease in mostly older Americans now, while simultaneously creating the necessary information, training, and financial infrastructure to support prevention based on informed, incentive-based, home-based, and multi-generational lifespan health planning. There may, however, at least in part, be a way for these two worlds to intersect. And that would be to follow the lead and wise insights of this nation's palliative care movement.
As populations age in the United States, chronic illnesses create an uncertain medical future. By 2030, a fifth of the U.S. population will be over 65, and many will face the challenges of managing one or more chronic illnesses for a significant number of years, including physical and psychological distress, functional dependency and frailty, and a need for support.1
Traditional care systems are not particularly well equipped for this situation. For example, our medical system focuses almost exclusively on curing illnesses and prolonging life — goals shaped by the hard-charging interventional past. But in the new order, these two worthwhile goals become hollow if they're not pursued simultaneously with goals of improving quality of life, relieving suffering, and providing physical and emotional comfort.2
The palliative care movement addresses this concern. Palliative care, which focuses on supporting the needs of the chronically ill as they approach the final phase of life, is as much a life philosophy and value position as it is a caring revolution. Two leaders of the movement recently noted "The aim of palliative care is to relieve suffering and improve the quality of life for patients with advanced illnesses and their families."1
The process of getting there is as important as the goal itself. Palliative care calls for an extraordinarily inclusive team effort with a strong emphasis on planning. This philosophy of care begins with physicians eliciting the concerns of the patient and loved ones. What is important in the patient's life? What more would he or she like to achieve? Is there something he or she fears worse than death?3 Concerns expressed during this conversation help define the patient's value system. Studies have found that patients almost always express the desire for more effective communication with a care team that is comfortable dealing with uncertainty and complexity. It's important for the care team to tailor care to the patient's individual needs.4
Palliative care is remarkably focused and pragmatic. If I place myself in an elder patient's shoes - multiple diseases, some compromise in capacity, but an uncertain prognosis - priorities become more obvious. What would I need? What would I ask of my caregivers? First, relieve my suffering. Second, improve the quality of my life. Third, manage my pain and other symptoms effectively over a long span. Fourth, while you are caring for me physically, don't abandon me psychologically or spiritually. Help me grieve my losses. Fifth, be sure to coordinate this as a team effort, remembering that my family and I are part of the team.
At the end of the day, the patient seeks enough comfort to contribute to loved ones' lives, enough resources to not be a burden to family and friends, and enough strength and capacity to control one's own life.5
Many people are dealing with these issues with their loved ones now, but it makes good sense to plan ahead for a time when this generation will have multiple medical conditions themselves but will not yet be in the dying process.
Where do hospice services fit in with palliative care? Hospice care has a remarkable track record in supportive, holistic, end-of-life care. In the United States, however, it has been primarily associated with terminal care of cancer patients. Insurance coverage for hospice services requires physician certification that a patient has only six months to live. Such certification in non-cancer chronic diseases has been difficult.6 But slowly, around the world, care systems are beginning to absorb the teachings of hospice in the form of chronic-disease management, team coordination, and a holistic, patient-centered care approach. When successful outcomes are well defined, everyone benefits.
How would a focus on palliative care benefit the build-out of a preventive, home-centered health care model? A quick survey demonstrates compatible values and ideals. Patients should be able to voice their personal needs and define their long-term and short-term goals. Evaluation should be thorough on the front end and take into account what patients define as excellent outcomes. Team approaches should be utilized, and the home serve, as much as possible, as the center of care. Care should be well planned, based on these expectations, and discussions should be summarized in a formal planning directive, leaving little to chance. Trusted home health managers, both formal and informal, should be identified, and integrated into the health care team.1
Were we to embrace such an approach, what would we find? More joy and pleasure; less pain and worry; less hospitalization; fewer nursing home placements; greater patient and family satisfaction; greater caregiver health and well being, and, in the end, a greater likelihood of a life lived to its full human potential.
References
1. Morrison RS, Meier DE. Palliative Care. NEJM. 2004;350:2582-2590.
2. Field MJ, Cassel CK, eds. Approaching death: improving care at the end of life. Washington. D.C.: National Academy Press, 1997. Cited in Morrison RS, Meier DE.
3. Quill TE. Perspectives on care at the close of life: initiating end-of-life discussions with seriously ill patients: addressing the "elephant in the room." JAMA. 2000;284:2502-2507. Cited in Morrison RS, Meier DE.
4. Tulsky JA. Doctor-patient communication. In: Morrison RS, Meier DE, eds. Geriatric palliative care. New York: Oxford University Press, 2003:314-331. Cited in Morrison RS, Meier DE.
5. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284:2476-2482. Cited in Morrison RS, Meier DE.
6. Fox E et al. Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease. JAMA. 1999;282:1638-1648.
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