We have a practice of death avoidance in this country. We don’t like to talk about, plan for, or even meaningfully acknowledge death. Westernized culture treats death and bereavement as private topics to stay within the family of the decedent, or to not be spoken about at all. Often, people find it inappropriate or are uncomfortable when death is discussed openly. Our policies and health care practices reflect this avoidance by pushing death to the margins — demonstrated through the divestment in end-of-life-focused care and services and the privatization of funeral and hospice organizations.
Yet, death is inevitable. A universal and human experience we all share. And in the past year, it has been front and center across the globe, with the global COVID-19 death toll at 2.56 million and the U.S. alone recently surpassing half a million. With strict public health precautions, individuals are dying in isolation, and families have often been unable to gather and mourn together. Hospitals, funeral homes, medical examiners, and cemetery workers are under strain with this unprecedented excess number of deaths. This pandemic demonstrates that we cannot keep avoiding our mortality, and the acknowledgment of death and dying will inherently improve end-of-life policies and services.
The pandemic is also illuminating and exacerbating inequities that have existed throughout U.S. history; inequities in death, loss, and grief included. A disproportionate number of Black, Indigenous and people of color are dying from the COVID-19 virus; the death rate for Black individuals is over twice that of white people. Experiences of grieving are compounded by financial insecurity and uncertainty, continued and intensified experiences of racism (including anti-Asian discrimination and the highly publicized murders of Black individuals by law enforcement and the community), and essential jobs often disproportionately held by BIPOC and lower-income individuals are at increased risk of exposure to the virus.
While the pandemic has introduced new challenges for the death industry, the dying, and for grieving families, our death-avoidant culture has impacted poor policy development and implementation long before the arrival of COVID-19. There are no national laws or standards that guarantee paid bereavement leave. Rising funeral costs disproportionately impact low-income individuals and families. Despite the continuous efforts of health care researchers and practitioners to increase normalizing and expanding the completion of advance directives, most U.S. adults, including those with chronic illness, do not have a completed advance directive on file. Racial disparities in health care persist, including in palliative and end-of-life care. Additionally, hospice care in this country remains underutilized by approximately 50% of eligible patients.
While hospice can provide robust and necessary care for those nearing the end of their lives, coverage and reimbursement restrictions make it challenging for the full potential of its services to be realized. The Medicare Hospice Benefit (which most other health payors model their coverage from) is one of the few health services that is reimbursed at a per diem rate, instead of the fee-for service model we see for most other health services. This means that hospice providers are pressured to make decisions about care that fall within the daily reimbursement rate instead of making care decisions that are the most appropriate for that individual patient.
It also means that patients must make decisions to stop receiving curative treatment or other health services that are not directly related to palliating symptoms related to their terminal disease. While our aggressive use of futile treatments for advanced disease is another conversation, the bottom line is we are forcing patients to make unnecessary decisions in order to receive the benefits of hospice or choosing not to enroll in hospice because they view it as “giving up.” On top of this, the low per diem rate prevents hospice services from being able to provide 24/7 hourly care to patients who need it, relying instead on the availability of informal caregivers.
There have been various efforts to improve the way we reimburse hospice services, including the Centers for Medicare and Medicaid 2015 ruling to increase the per diem rate, and the passage of legislation allowing physician assistants to serve as attending physicians for hospice in order to strengthen the hospice workforce. Despite this progress, hospice reimbursement and coverage remain largely the same in the 40 years since the Medicare Hospice Benefit was established.
Our death culture and policies were in need of reform long before the pandemic hit. As we are reimagining what life will look like in the coming years, it is also time to start reimagining and reforming the way we approach death.