Death is now a home based event.
My awesome colleague, co-author, and friend, Sarah Cross is the lead author on a new article at New England Journal of Medicine that has found that Americans whose deaths are attributed to natural causes are dying at home more often than the hospital.
Between 2003 and 2017, there were nearly 35.2 million natural deaths (Figure 1). Most were attributed to cardiovascular disease (29.3%), followed by cancer (24.5%), respiratory disease (10.5%), dementia (7.9%), and stroke (5.9%).
In 2003, a total of 905,874 deaths occurred in hospitals (39.7%), which decreased to 764,424 (29.8%) in 2017, whereas the number of deaths at nursing facilities decreased from 538,817 (23.6%) to 534,714 (20.8%). The number of deaths at home increased from 543,874 (23.8%) in 2003 to 788,757 (30.7%) in 2017, whereas the number of deaths at hospice facilities increased from 5395 (0.2%) to 212,652 (8.3%). These trends were seen across all disease groups.
There are notable differences in where people die depending on their demographics and causes of natural death.
So what does this mean?
There are several major policy threads coming through in this short article. The first is that hospice and home deaths are becoming more common. That strongly implies that there is a lot more end of life home and unpaid caregiving now than under the counterfactual of holding 2003 places of death constant. Unpaid caregiving has massive direct and indirect economic costs. My Duke colleague Courtney Van Houten and her co-authors have shown that the economic costs of unpaid care giving for a year can easily run into the six figures even as the fiscal costs are “only” in the low five figures. There has been a concerted policy effort over the past decade to shift care out of high federal cost facilities to lower cost (to the federal government) locations of care. In a recent Health Affairs Blog post, Chatterjee and others raise the possibility that this is cost shifting instead of cost saving once we account for unpaid caregiving burden as a real cost:
The push to discharge more patients directly home after hospitalization may seem preferable in some circumstances. In addition to being financially sensible by decreasing spending on postacute care, patients might prefer to be discharged home rather than to an institutional setting. In this way, getting patients home may represent a rare opportunity to align goals across patients, payers, and health systems. However, these gains must be viewed in the context of the costs borne by those who care for patients once they are discharged home—informal caregivers. …
Payment policies designed to reduce institutional postacute care do little to support home-based care when patients are more quickly discharged than before. Medicare’s home health benefit provides limited home-based support, with at most one visit per day from a home health provider. Although Medicare Advantage expanded this benefit in 2019 to cover non-skilled needs such as help with daily activities, in the postacute period, when patients frequently need significant support in their activities of daily living, a once-daily visit is unlikely to alleviate caregiver burden.
Furthermore, our current hospice benefit was designed to be effective within the paradigm of well staged, predictably descending cancer progression. Hospice has become far more commonly used over the past twenty years. In 2016, 1.4 million people used hospice, and 95% were over the age of 65. The disease mixture of the hospice using population has changed. In a recent paper that examined an upstream palliative care demonstration project for the very seriously ill that Sarah and I worked on with numerous colleagues at Duke, over 80% of the project decedents had more than six comorbidities in the last year of life, more than eighty percent had a dementia, and almost all had a cardiology concern while less than forty percent of program decedents were diagnosed with at least one cancer in the last year of life. The target population was specifically chosen to be very ill, but the surrounding decedents who were not in the program were twice as likely to have a dementia diagnosis in the last year of life than a cancer diagnosis.
Our hospice programs are still optimized for a different care pathway. Furthermore, we place restrictions on hospice and palliative care program expansions that we don’t place on other medical interventions and innovations. From the same article, we explain:
In health care, the expectation of cost neutrality is unique to hospice and now palliative care, where coverage for therapies is typically based on their efficacy and ability to improve patient and caregiver outcomes. Given the challenges of using reimbursement to measure resource use, alternative measures may be needed. For example, hospice enrollment could be considered as a surrogate outcome that reflects reduced resource utilization at the EOL and high-quality EOL care. We found that the CMMI demonstration significantly increased odds of hospice enrollment. Patient-centered care, symptom control, and alignment with patient and caregiver preferences are also important outcomes to consider in evaluating palliative care models.
Right now, any innovation or policy change that does not save money during the end of life care regimen will not be favorably evaluated. Other treatment interventions can and are favorably evaluated if they buy improved quality of life and improved health at reasonable net new expenditures.
As more and more Americans are dying away from institutional settings, policy needs to catch up to reality. Sarah and her co-author have made a meaningful contribution to the policy environment by noting that our reality of where we die has changed and is likely to continue to change and therefore policy needs to catch up.