Hospice Enrollment Linked to Symptom Burden But Care May Often Begin Later Than Needed

As restricting symptoms increase and the functional status of older adults nearing the end of life declines, the likelihood of hospice referral rises, researchers have found. But because the median hospice stay is just 12.5 days, many patients experience distressing symptoms and disabilities for months prior to the start of hospice, according to a report published in Journal of the American Geriatrics Society.

“Hospice services appear to be suitably targeted to older persons with the greatest needs at the end of life, although the short duration of hospice suggests that additional strategies are needed to better address the high burden of distressing symptoms and disability at the end of life,” write the authors. “In an earlier study, we found that the number of restricting symptoms at the end of life decreased significantly after the start of hospice.”

15-Year Study

Investigators analyzed data on the last year of life for decedents (n = 562) from an ongoing longitudinal study of 754 community-dwelling older adults (aged ≥ 70 years) who were nondisabled in activities of daily living (ADLs) when enrolled from 1998 to 1999. Follow-up via home-based assessments every 18 months and monthly telephone interviews with participants or their proxies were conducted through 2014.

During follow-up interviews, participants were assessed for the presence of any of the following restricting symptoms: fatigue; musculoskeletal pain; dyspnea; chest pain or tightness; nausea, vomiting or diarrhea; depression; anxiety; arm or leg weakness; difficulty sleeping; dizziness or unsteadiness; difficulty with memory or thinking; swelling in feet or ankles; cold or influenza symptoms; poor or decreased vision; and urinary frequency, pain or incontinence.

Participants were also assessed for the presence of any disabilities in the previous month in the following ADLs:

• The basic activities: bathing, dressing, walking, transferring
• The instrumental activities: shopping, housework, meal preparation, taking medications, managing finances
• The mobility activities: walking 1/4 mile, climbing a flight of stairs, lifting and carrying 10 pounds, driving a car

Overall

Key Findings:

• During a specific month, the likelihood of hospice enrollment increased by 66% in the setting of any restricting symptom (adjusted hazard ratio [aHR], 1.66; 95% confidence interval [CI], 1.30 to 2.12) and by 9% for each additional restricting symptom (aHR, 1.09; 95% CI, 1.05 to 1.12).
• Further, each additional month with any restricting symptoms increased the likelihood of hospice enrollment by 7% (aHR, 1.07; 95% CI, 1.01 to 1.13).
• The likelihood of hospice entry increased by 10% (aHR, 1.10; 95% CI, 1.05 to 1.14) for each additional disability during a specific month.

“Our results suggest that decisions about hospice admission at the end of life are based, at least in part, on the presence and burden of restricting symptoms and disability,” write the authors.

“In absolute terms, the average probability of hospice admission was 15% higher in the last year of life for participants who had any restricting symptoms in a specific month than for those who did not.”

However, both the prevalence and mean number of restricting symptoms began to rise at six months before death, well before patients’ referral to hospice, note the authors.

Symptom Burden Should Inform Hospice Referral

“Because hospice is designed to ameliorate pain and other distressing symptoms, referral to hospice should be based, at least in part, on the burden of these symptoms, but the short duration of hospice, coupled with preliminary data from our group, suggest otherwise.”

The finding of short hospice stays, suggesting late referrals, is cause for concern, according to the authors. They suggest that hospice may be underused among older adults because many physicians “may not weigh the burden of disability in their decision-making about hospice referral, despite evidence that functional status is one of the strongest predictors of mortality in older persons.

“Our focus on symptoms leading to restricted activity and disability in basic, instrumental and mobility activities enhances the clinical relevance of our findings because proper management of these symptoms and disabilities may substantially improve quality of life while reducing caregiver burden.”

Source: “Beyond Code Status: Palliative Care Begins in the Emergency Department,” Annals of Emergency Medicine; April 2017; 69(4):437-443. Wang DH; Department of Emergency Medicine, Stanford University, Stanford, California; and Division of Palliative Medicine, University of California-San Francisco, San Francisco.