It's Complicated: End-of-Life Care Needs a Streamlined, More Compassionate Approach

Article excerpt

Death is inevitable, but the experience of illness and dying has changed tremendously. At the beginning of the 20th century, most people died at home, usually from a sudden illness or injury. Now, most Americans die of chronic, progressive illnesses, often after prolonged periods of physical dependency. For the estimated 10 million Americans with long-term and chronic care needs, access to palliative care and hospice varies widely, and many needs remain unmet. Solutions are available, however, as Joanne Lynn notes in her piece on the power of communication (page 10) and W. Anthony Riley mentions in his article on the solace of hospice (page 11).

The costs and burdens of healthcare are concentrated in the last years of life. According to the June 2011 MedPAC Report to Congress ( port.pdf), the 5 percent of Medicare beneficiaries who die in a given year account for roughly one-quarter of that year's Medicare spending. Medicare beneficiaries incur approximately $40,000 in healthcare expenses in their last year of life. Yet much of this spending is of no benefit to the patient.

We can help control the rate of growth in healthcare costs by empowering consumers to demand the care that they want and need near life's end. The current system fails individuals, healthcare providers and society.

The amount and quality of long-term services and supports, palliative care and hospice vary tremendously, as do unmet needs near the end of life. In its Research Portfolio Online Reporting Tool, the National Institutes of Health lists the many problems patients with advanced illness and functional decline experience-from untreated pain to lengthy hospitalizations involving unwanted, often low-yield and costly medical treatments, to low overall family satisfaction.

Complications of Care

Conflicting goals of healthcare providers and long-term-care systems complicate seamless delivery of care for people with advanced illness. Primary and acute care providers focus on treating and curing illness, and long-term-care providers address convalescence, rehabilitative, restorative and custodial care. Clinicians are often too slow to recognize what will be a chronic, life-limiting condition, delaying or not having crucial discussions about goals of care and treatment. Myra Christopher's story (page 11) discusses clear advance planning options for both clinicians and patients.

Care providers in each setting also are often influenced by specialized training, institutional protocols and culture, regulatory regimes and funding streams. And, current reimbursement structures reward healthcare providers for excessive testing and interventions, which encourage greater hospital use and physician specialization.

All of these "systems" attempt to provide care for an extended period of time. Until recently, physicians had not viewed disease, disability and frailty as connected, instead treating each as a separate condition. As Diane Meier eloquently points out on the front page, the development of palliative care beyond hospice is applicable across all diseases and populations, is multi-disciplinary and holistic, and should be implemented early in the course of serious life-threatening illness. …