The Globe Spotlight team’s exploration of the end of life laid bare, through data and narrative, how our society’s inequities extend even to the grave and how few of us control our final days. It covered, but was not limited to, the COVID-19 pandemic period.
They found that in Massachusetts, a state that boasts some of the world’s greatest hospitals, income and race are factors in not only where and how people die, but in how long they live. The difference between living in a wealthy neighborhood or a poor one can mean as much as 15 years of life.
They found that the region’s long-neglected nursing homes were particularly ill-prepared to handle the pandemic, and uncovered factors responsible for high fatality rates, including a facility’s level of skilled nursing staffing. By summer, Massachusetts had one of the nation’s highest death tolls among long-term care residents: one in seven nursing home residents died of COVID-19.
Race, the team found, influences a person’s access to palliative care and hospice – the compassionate medical specialties for the seriously ill and those at the end of life – as well as the likelihood of dying at home. Reporters found that in addition to a lack of good options for everyone, there is often a lack of trust; for Black patients, especially, end-of-life planning to avoid an overly medicalized death raises suspicions about not getting enough care.
And they found a rich and poor divide in nursing homes, including evidence from a Spotlight undercover operation that shows facilities discriminating against Medicaid applicants in favor of wealthier patrons who can afford to pay higher private rates.
The series went beyond data. It developed human stories about the pain of racial bias and the frequent unfilled promises of hospice. One story followed a terminally ill woman from Washington who chose to end her life through a “medical aid-in-dying” program. Another looked at a “wrongful life” lawsuit, filed by a Montana cardiac patient who sued hospital staff who revived him despite his Do-Not-Resuscitate order.