Hospice and palliative care providers have worked hard to improve access to hospice and their efforts are buoyed by reports of increased hospice use. But a recent study by Joan Teno and colleagues in this week’s Journal of the American Medical Association uncovers some troubling trends. Patients may be using hospice more than ever, but too often, referral to hospice occurs only after patients have exhausted aggressive therapy, including care in the ICU. Moreover, this study reveals what many who work in hospice already know- that patients are shuttled from hospital to home or to a nursing home or inpatient hospice facility during their final few days and die before having an opportunity to fully benefit from the interdisciplinary care that hospice excels at providing and that patients and families so need.
Teno and her co-authors analyzed Medicare fee-for-service files of close to 850,000 Medicare beneficiaries who died in 2000, 2005, and 2009. They particularly focused on site of death, place of care, and care transitions in the last 3 days of life for those with a diagnosis of dementia, COPD or cancer. The average age of patients in the sample was 82 years. They found that hospice use increased from 21.6% in 2000 to 42.2% in 2009, but short stays in hospice also rose (22.2% to 28.4% respectively). Forty percent of these late referrals were preceded by a hospitalization that included an ICU stay (especially for patients with COPD). Just as disturbing, Medicare beneficiaries with advanced cancer and other debilitating chronic illnesses such as end stage dementia were marked by frequent transitions in the last 3 days of life and multiple hospitalizations in their final 3 months, From these data, it appears that referral to hospice is in response to crisis - or the failure to respond to aggressive measures. It brings to mind the appalling notion that hospice is only for patients “when there is nothing left to do”.
The setting in which people die has been proposed as a quality measure for end-of-life care. This study helps bring to light that site of death alone does not necessarily measure quality, especially if death at home with hospice occurs a day or two after being discharged from the hospital, often with poorly controlled pain and other symptoms and the family suddenly thrust into emotional and spiritual turmoil.
Unfortunately, the growth in hospital-based palliative care has not yet translated to measurable reductions in aggressive care at the end of life. End of life decisions and the culture of end-of-life care are complex. It will require vast changes in the way that society views death and dying and fundamental change to the health care system to improve outcomes for these vulnerable patients. Too often, it’s only after the patient has died that their family members and caregivers look aback and wish they had done things differently.
Posted by Terri Maxwell, PhD APRN Vice President, Strategic Initiatives, Weatherbee Resources, Inc. & Hospice Education Network Inc.