The Boston Globe Spotlight Team’s series, “Last Words,” drew attention to a subject few want to dwell on: the final stage of life. Reporters analyzed data from more than 1 million death certificates and found inequities in how, where, and when people die. They also conducted scores of interviews and secured hard-to-obtain data about the coronavirus pandemic, probing for the reasons behind the state’s staggering death toll in nursing homes.
These are some of the top takeaways from what we found.
1. Even in a region with some of the best hospitals in the world, poor people, as a group, live shorter lives than people with means.
A Spotlight analysis found the difference was an astounding 15 years.
In 2019, in the 50 poorest Massachusetts census tracts — neighborhoods of Brockton, Worcester, Boston, and Fall River, among others — the median age of death was 70.
In the 50 richest — parts of Lexington, Newton, North Andover, and others where household income was above $160,000 — the median age of death was 85.
2. Race matters in people’s views toward end-of-life decisions, especially in how much aggressive treatment a person wants near the end of their life.
Black patients are more likely than white patients to seek prolonged aggressive treatment for diseases that are likely to be fatal, in part due to suspicions that the medical community may try to deny or discourage care based on racism, according to interviews and data.
Black respondents in a Globe/Suffolk University poll were more likely to say they would seek treatment to prolong life under harsh conditions, such as terrible pain or dementia. White people are more likely to fill out documents outlining the end-of-life treatment they do and do not want, often with an eye on avoiding aggressive medical care unlikely to do much good. In states that allow terminally ill patients to get lethal drugs to end their own lives, those programs have been overwhelmingly used by white patients.
3. Interpreting death data by race and ethnicity is filled with caveats, but some statistics send clear troubling messages: The state’s Black and Latino populations have higher death rates for infants and children than white families have.
In 2018, the death rate for Black children from birth to age 5 was nearly three times that of white children. Death rates for Latino children of those ages were about 24 percent higher than those of white children.
4. Newly released 2020 death data confirms that Black and Latino residents — particularly those in blue-collar jobs — faced a much steeper COVID-19 toll than white residents.
Just 7 percent of white patients who died of the coronavirus by early July were of working age, younger than 65.
Among Black residents who died from the coronavirus, though, 20 percent were people under age 65; for Latino residents, the figure was 28 percent.
It should be noted that white people in Massachusetts suffered more total deaths due to the pandemic because they represent the vast majority of residents in the state.
5. Americans idealize the home death, but most people do not actually die where they want.
Seventy-two percent of Massachusetts adults said they would rather die at home than in a hospital or other institution, according to a Globe/Suffolk University poll. But only about one in four residents actually die at home. People who are Black, Latino, or poor are more likely to die in a hospital than those who are white or wealthy.
6. Massachusetts has seen an impressive plunge in its COVID-19 infection rate since early summer, but this followed staggering death tolls in nursing homes, among the highest in the country.
About 1 in 7 Massachusetts nursing home residents died from the virus. While national comparisons can be difficult because of varying methodologies used by each state, the coronavirus death toll in Massachusetts long-term care facilities is unquestionably one of the highest in the country — and has now topped 6,000. The state’s rate is second only to Connecticut, based on deaths per 100,000 residents.
7. Controlling COVID-19 outbreaks in housing for elders has proved daunting nationwide, but this state’s early response to the COVID crisis in Massachusetts nursing homes was halting, chaotic, and in the end, disastrous.
Among the major missteps: State officials did not quickly authorize widespread testing for nursing home staff, allowing them to potentially spread the virus to one another and to residents for weeks. They promoted a poorly conceived plan to have nursing home employees test their elderly charges themselves, with little extra training, only to abandon it after widespread failures. Governor Charlie Baker’s administration was also so focused on preventing hospitals from being overwhelmed by COVID that nursing homes were initially an afterthought. The state’s priorities were seen in everything from its early distribution of personal protective equipment to its plan to empty some nursing homes to make room for recovering virus patients discharged from hospitals.
8. The failure at first to recognize the threat of asymptomatic spread of the COVID-19 virus contributed to the nursing home death toll.
Despite public health warnings in late March about asymptomatic spread and the known vulnerability of nursing home residents, state officials failed to act on this information early enough. Baker’s administration now prioritizes coronavirus testing for nursing home workers and residents, based on the rate of COVID in the surrounding community and other factors.
9. Nursing home deaths in Massachusetts have been widespread. And well-resourced, highly rated nursing homes have fared no better during the pandemic than less-funded, lower-ranked ones.
Almost 80 percent of Massachusetts nursing homes have seen confirmed or probable COVID-19 deaths. And of the five nursing homes with the highest COVID-19 death rates in Massachusetts, four are five-star homes, as rated by the federal government. These include Belmont Manor, a coveted, costly 135-bed facility in an affluent Boston suburb that has reported 56 confirmed or suspected COVID-19 deaths.
10. Two factors appeared to make a difference in death tolls at long-term facilities: Geography and licensed nurse staffing.
A Spotlight analysis found that, statistically, the most powerful factor is a facility’s location in a high-population area such as Greater Boston, a viral hotspot. And once infection enters a building, a second factor comes into play: the number of licensed nurses, who have extensive training in infection control. Taken together, the two factors can make a major difference: Nursing homes in Greater Boston with below-average licensed nurse staffing hours have an average COVID-19 death rate about 50 percent higher than facilities outside that area, with more nurse staffing.
11. In a Spotlight probe that took place before the pandemic, reporters found evidence of possible unfairness to poor elderly people: potential illegal discrimination against nursing home applicants who plan to rely on Medicaid to pay their bill.
Last December, Globe reporters posed via e-mail as daughters of potential applicants, seeking a bed. Some said their mothers were applying for Medicaid, while others said their mothers planned to pay privately. Nursing home staff were more than twice as likely to say they had no room when responding to inquiries from families saying they planned to pay for care with Medicaid, the government insurance for low-income people, than when responding to those paying higher out-of-pocket rates.
Statewide, Medicaid reimburses nursing homes a median cost of $209 a day, compared to $389 a day paid by private-paying residents. It is illegal in Massachusetts for nursing-home operators that accept Medicaid funding to give preferential treatment in admissions to private-paying applicants over those on Medicaid or soon to be eligible for it.
The entire three-part series, “Last Words,” can be found at www.bostonglobe.com/lastwords.