Square pegs; round holes: Our health care system is failing seriously ill older Americans in their last years

Introduction

The Tax Equity and Fiscal Responsibility Act of 1982 enacted the Medicare Hospice Benefit, to provide palliative services for terminally ill patients in the last year of life¹. This service was originally tailored towards the needs of cancer patients; it was structured largely on the average Medicare costs incurred for cancer patients during the last six months of life for the calendar year of 1978. The hospice service model has since remained relatively static and not been sufficiently adapted to the rapidly changing needs and demographics of people nearing the end of life. Thus it falls short of meeting the needs of Americans who are living longer, bearing the burden of one or more chronic illnesses which impose protracted periods of burdensome symptoms and restrictive disabilities.

Functional limitations are common in the last years of life

The National Bureau of Economic Research² identified that disability increases for older Americans in the last year of life, with about 80 percent of them being disabled. The most common major diseases³ in older adults are heart disease, cancer, lung disease, Alzheimer’s disease, and stroke. Nearly half of the older population report one or more Activities of Daily Living (ADL) or Instrumental Activity of Daily Living (IADL) problems. Being non-white, being single, and having less education are associated with higher levels of disability. This sobering trend has not changed significantly over the time period of 1991–2009², despite advances in medical treatments. In fact, the average American, in the last year of life, has 2.7 ADL and 3.1 IADL problems with 95% of patients having significant functional limitations.

Hospice care for older adults: Too little, too late

The Medicare Hospice Benefit provides services to older adults who have a qualifying terminal diagnosis and an anticipated prognosis of six months are less. In 2014, approximately 84% of hospice patients in the US were 65 years of age or older: 16.8% young-old (65–74 years), 26% mid-old (75–84 years) and 41.1% were old-old (≥85 years) ⁴. These numbers, while seemingly high, do not tell the entire story. The median length of hospice service nationally in 2014 was only 17.4 days, and it decreased from 18.5 days in 2013. Only 10% of hospice patients remained under hospice care for six months or more. Approximately, 35.5% of patients admitted to hospice died or were discharged within just seven days of admission. However, older adults in the last two years of life have a great need for amelioration of burdensome symptoms as well as ongoing support provided to compensate for their functional limitations.

Frailty and multimorbidity are common in older adults

Deaths due to cancer and lung diseases decrease in the gero-geriatric population and deaths due to heart disease, stroke, and Alzheimer’s Disease increase (see Figure 1). Additionally, the illness course of advanced non-cancer diagnoses like heart failure, stroke, lung diseases, and dementia are less predictable (compared to the typical cancer trajectory) and further confound an accurate estimation of life expectancy. The last years of life in advanced dementia are often characterized by a prolonged trajectory of severe disability⁵. Illnesses like end-stage heart disease and lung disease are characterized by a waxing and waning trajectory and associated with progressive debility and disabilities in the years preceding death. The prevalence of frailty and multimorbidity increase with advancing age and are known to be associated with increased mortality and disability. However, none of these diseases may individually reach the severity threshold to qualify as the primary diagnosis for the Medicare Hospice Benefit; also an accurate estimation of life expectancy is particularly challenging in older adults with multimorbidity as the diseases coexist and moderate each other.

Figure 1.

Causes of death in the geriatric population in the US

Progressive frailty, though very common in older adults at the end of life, cannot be listed as the principal hospice diagnosis for hospice eligibility, effective October 1, 2014. ^6,7

In a study of 562 decedents aged 70 years or older, Gill et al found that the most common cause of death was frailty, followed by organ failure, advanced dementia, and cancer.⁸ They also showed that the likelihood of hospice admission was highest for cancer and advanced dementia, intermediate for organ failure and lowest for frailty: the median (IQR) duration of hospice was only 12.5 (4–43) days in their study population. Their participants reported a number of burdensome and restricting symptoms and disabilities in the months preceding death; these were trending upwards at the end of life. The authors also stated that they were uncertain if an earlier referral to hospice would have alleviated the burden of distressing symptoms and disability in their patient population. This statement does not question the great and well-recognized value of hospice care; rather, it highlights the increasing care needs of seriously ill older Americans in the years preceding death, most of which are currently unmet.

Hospice care is limited in its ability to help patients with prolonged disability in the last years of life

Estimating life expectancy is difficult in non-cancer diagnoses. The dying trajectory of patients with non-cancer diagnoses (heart disease, lung disease, stroke and Alzheimer’s) is characterized by distressing symptoms and disabilities that progressively increase in the last two years of life. These patients require ongoing assessment and amelioration of distressing symptoms, as well as ongoing home health aid and assistance with ADLS. For patients who live at home, the burden of the care falls largely on unpaid family caregivers. One study⁹ documented that older Americans at the end of life receive about 61.3 hours of care (remember that full time employment in the US is currently 40 hours of per week) from unpaid friends and family members. While hospice care provides much-needed support and alleviation of distressing symptoms in a terminally ill population, its current structure limits its ability to help seriously ill older adults who have prolonged disabilities and restrictive symptoms. Today, the vast majority of hospice care is still delivered in the outpatient setting. While most patients prefer to spend the last phase of life at home, this is feasible for older adults with restrictive disabilities only if they have access to support services at home. The Medicare Hospice Benefit does provide a limited amount of home health aid and homemaker services as a part of the ‘homecare day service’, and this rate does not vary by volume or intensity of services provided to the patient. It also provides a service intensity add-on (SIA) payment, additionally reimbursing hospice agencies for up to four hours of direct patient care from a registered nurse or social worker for patients in the last seven days of life. These support services are valuable, but they completely fall short of meeting the increasing care needs of the seriously ill older adults living at home. Also, hospice support eludes older adults bearing the burden of multimorbidity but lacking a qualifying terminal diagnosis. These patients are forced to endure the cumulative burden imposed by multiple concurrent chronic diseases. As they progress inexorably through the last years of life, they are often subjected to well-intended but ineffective and burdensome treatments that they may not want. Devoid of home health aid and support and unable to qualify for hospice care, these patients have to depend on the goodwill of unpaid family caregivers for essential care.

The need of the hour: home health aide care and homemaker services

The National Academy of Medicine¹⁰ recommended expanding the Medicare long term care benefit and adapting the hospice eligibility criteria to suit the needs of an increasingly aging population, including greater access to home health aide services. As we think about restructuring the care system to meet the needs of our rapidly aging society, it is imperative that we create a national infrastructure that provides much-needed home health aide care and homemaker services to seriously ill older adults with disabilities in addition to care that palliates symptoms. The Department of Veterans Affairs exemplifies one national bright spot in this realm. The VA provides Homemaker and Home Health Aide Care (HHA) through trained personnel who can go to a Veteran's home and provide care. The Homemakers and Home Health Aides are not nurses, but they are supervised by registered nurses who assess the patient's daily living needs. The HHA program is tailored to support patients with disabilities, who need skilled services, case management and help with ADLs. These services can be used as a part of an alternative to nursing home care, and as a way to get respite care at home for the patients and their family caregivers and thereby allow them to remain in the community. Most importantly, HHA services can be used concurrently with other Home and Community Based Services and supplement services provided through the Medicare Hospice Benefit. Recognizing the high prevalence of disabilities in older adults in the last years of life, the VA provides HHA services as a part of the VHA Standard Medical Benefits Package; that is, all enrolled Veterans can access these services if they meet the clinical need for the service, irrespective of their prognosis.