One million reasons to reimagine end-of-life care

The magnitude of loss from Covid-19 — 1 million-plus deaths, many millions more grieving loved ones who have died, the country’s social fabric in tatters — is incomprehensible.

Life expectancy in the U.S. has fallen by two years since the beginning of the pandemic. This is the largest decline in almost a century, driven mainly by deaths among people under age 60. Many of these can be classified as “bad deaths.”

As a physician who advocates for better end-of-life experiences, I wonder how the pandemic has changed our relationship with death. Has proximity to so much sickness and death made us more willing to engage in hard conversations about dying, to think about how we can make the experience less hard? Or are we more afraid than ever before?

The answers might become clear with time, but what we know right now is this: Nine people are affected by every life lost. How those individuals perceive the dying experience — was it good or bad? — influences their bereavement processes.

Simply put, while death is always difficult, people process and heal from the loss associated with good deaths better than they do from those considered to be bad.

To many people, a bad death is marked by isolation, uncertainty, or unnecessary pain and suffering. For those who died during the Covid-19 pandemic, the end-of-life experience was more often than not marked by all three.

But what does a good death look like? A 2021 survey of more than 1,200 caregivers around the world identified several key factors that are associated with good deaths, including good management of pain and comfort, having a clean and safe space, being treated kindly, and treatments that address the quality of life rather than just extending it.

Researchers at the Duke-NUS Medical School in Singapore selected the 13 most-cited elements of a good death and then asked 181 palliative care physicians in 81 countries to grade their countries’ health systems based on these elements. The United Kingdom came out on top. Other countries that got an A for end-of-life care include Ireland, Taiwan, Australia, South Korea, and Costa Rica. According to the report, “Best Places to Die,” the U.S. got a grade of C-minus, coming in 43rd of the 81 countries surveyed.

The U.S. — even before the pandemic — has consistently performed badly when it comes to dying, for reasons that are legion and, sadly, well known. To name just a few: the opioid crisis has complicated providing pain management, a key part of end-of-life care; inequitable health, housing, employment, and education systems create unequal access to care at the end of life; and perverse financial incentives are at play in which providing aggressive treatments and invasive procedures are rewarded. In matters of equity, access to care, efficiency, affordability and health care outcomes, the U.S. ranks last in relation to 10 other wealthy nations.

A 2021 report by The Commonwealth Fund found that top-performing countries rely on four features to attain better and more equitable health outcomes across populations and life spans:

• They provide universal coverage and remove cost barriers so people can get care when they need it and in a manner that works for them.
• They invest in primary care systems to ensure that high-value services are equitably available in all communities to all people, reducing the risk of discrimination and unequal treatment.
• They reduce administrative burdens on patients and clinicians that cost them time and effort and can discourage access to care, especially for marginalized groups.
• They invest in social services that increase equitable access to nutrition, education, child care, community safety, housing, transportation, and worker benefits that lead to a healthier population and fewer avoidable demands on health care.

A key reason Americans often die badly is because the U.S. doesn’t value preventing illness and debility or providing secure housing and social support. In other words, dying well is a measure of living well, and far too many Americans aren’t given the opportunity to live well.

Like many Americans, I mourn for the million-plus people who have died from Covid-19. I also mourn for the 9 million people left behind. Their lives will be irrevocably marked by the knowledge that dying well — and living well — shouldn’t have to be this hard.

But we have the power to fundamentally reimagine models of end-of-life care if we can receive this knowledge as a rallying cry. The U.S. showed it can move mountains when companies developed and delivered vaccines and treatments for Covid-19 in record time. It’s time for us to get moving on improving care at the end of life.

Shoshana Ungerleider is an internist practicing primary care at Crossover Health in San Francisco. She is the host of the TED Health podcast and the founder of endwellproject.org.