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Agonizing turns in the final stage of life

Barbara Jutstrom shares a headstone with her husband, Robert, at the Massachusetts National Cemetery in Bourne. She was a resident at Belmont Manor Nursing & Rehabilitation Center in Belmont. She died on April 9.Craig F. Walker/Globe Staff/The Boston Globe

End-of-life racial disparities demand structural change in health care

Re “Last words: Is death the great equalizer?” (Spotlight, Page A1, Sept. 27): It’s essential to address issues of racial inequalities, implicit bias, and structural racism in order to move the field of palliative care forward and improve serious-illness care in people of color. There are indeed racial differences in end-of-life care; however, we must critically appraise and acknowledge that these disparities are in fact due to racism and implicit bias. These differences demand structural change in health care and naming of the differentiating effects of systemic racism.

For example, the Spotlight Team discusses people of color as less likely to complete advance directives and enroll in hospice. However, when palliative care consultation is provided, people of color choose hospice at similar rates to other racial groups. Mistrust of the health care system has frequently been named as a cause for the end-of-life care disparities in people of color, but this idea has not been supported by empirical studies measuring the trust variable. Access to information, literacy, and communication are more important factors in medical decisions by minority groups than trust.

There is an intersection between race and socioeconomic status in the United States, which requires an in-depth analysis of social and political contributors as accounting for health-related disparities.


Katie Fitzgerald Jones


The writer is a palliative care nurse practitioner and a doctoral student at Boston College School of Nursing.

We need to transform the way we pay for and provide long-term care

This compelling Spotlight Series ought to be made into a booklet and provided to every state legislator when the next session begins. The issues it raises should be the Legislature’s and the governor’s top priority.

In the short term, nursing homes, because of their being the default option for long-term care, need to be reimagined. There are a number of recommendations for improvements at nursing facilities, including single-room occupancy, a full-time infection preventionist on staff, and a safe visitation policy to prevent isolation. In the longer term, however, America needs to transform the way we pay for and provide long-term care.


Medicaid programs need to invest considerably more in care in all settings. As Medicaid has shifted long-term care into people’s homes, funding has not kept pace, meaning that more is demanded of families, who are often responsible for providing informal, unpaid care.

Since not every older adult will be able to live in the community, new models of smaller facilities, such as the Green House model, need to be developed. Green House homes provide care in small, self-contained, family-style houses with a small number of residents. These models could offer a community-based alternative to nursing homes.

In a recent New England Journal of Medicine article, the authors argue that “the United States needs to reconsider our piecemeal approach to paying for long-term care. Existing programs, such as Medicare and Medicaid, would have to fundamentally change the way they pay for long-term care to meet the needs of our aging population. More comprehensive funding through existing social insurance programs or stand-alone universal long-term care insurance for the entire population . . . could provide a better model that values long-term care.”

Richard T. Moore


The writer is a former state senator who chaired the Joint Committee on Health Care Financing, and is a former president of the Massachusetts Assisted Living Association.


Have we learned from first wave’s horrors to prepare for surge?

I read with horror the article “Homey, coveted, costly — and crushed by the pandemic” (Spotlight, Sept. 29). The most striking part (and there are several) is that the facility physicians did not come into the Belmont nursing home during the height of the pandemic. Those residents, critically ill, were denied a medical assessment and instead had a doctor commenting on care over the phone so they wouldn’t spread the virus from facility to facility. Yet the expectation was that aides would come in every shift and care for these vulnerable residents. Who would be better trained to wear personal protective equipment and know how to stop the spread of infection?

The administrators had to know the aides had multiple jobs. In all probability, the deaths still would have occurred, but could medical expertise have provided palliative care and comfort to those in their last days of life? Is this the best we can do to care for the most vulnerable population? Are we afraid to even think about nursing homes because we dread the possibility of ourdependence someday?

We live in an area of the best medical care in the country, but that certainly did not extend to countless Massachusetts nursing home residents.

How are we getting ready for a possible surge? Have any lessons been learned?

Kathy Wisnieski


The writer has been a registered nurse for more than 40 years.

Focus your harsh lens on government payments, not nursing homes

It was disappointing to read “Spotlight Team probe: Potential Medicaid discrimination at Massachusetts nursing homes” (Sept. 29). As the daughter of parents with dementia, both of whom have had to be placed in a nursing facility; as a former administrator of a senior care campus; and as a post-acute care consultant, I understand the facets of how nursing homes operate. Instead of continuing to pummel the nursing home industry, how about reporting on the real issue, which is that the state and federal government payment system for long-term care is completely upside-down.


Nursing homes are forced to balance private pay with government payers (Medicaid); the article acknowledges that Medicaid rates haven’t kept up with costs but still continues to make the nursing homes out to be villains.

I can assure you that most nursing homes are not the houses of horror that the Globe has portrayed them to be. Most are staffed by dedicated, hard-working staff and administration who care about residents.

Moreover, there was no mention about the issue of Medicaid spend-downs, which affects most nursing home applicants — middle-class seniors who have “too much” income to qualify for Medicaid but cannot afford to pay privately. Often their incomes are over by pennies but they still don’t qualify for services.

I expected better from the Globe, particularly the Spotlight Team.

Lori Barrett


Death . . . bummer

You may call me a cynic, but to your earnest, noble attempt to create a news story when there is none — death is still the great equalizer — I would submit the following:


“In the long run, we are all dead” – John Maynard Keynes

“For the poor always ye have with you” – John 12:8

“The Gods help those who help themselves” – ancient Greek proverb

“Plus ça change, plus c’est la même chose” – a French proverb (“the more things change . . . ”)

Of course life is a bummer if you are poor or not a member of a country’s ruling elite, but this is, alas, all part of what the Frenchman Andre Malraux referred to as “La condition humaine.”

Nicholas Fuller


A clarifying sentence was called for

The Spotlight article “A home to die in” (Page A1, Sept. 28) created an unfortunate lack of explanation of the role of Rogerson House, especially when it prominently featured the photograph of the chief executive of its parent company, Rogerson Communities. One sentence would have sufficed: “Rogerson acted promptly and put in place safety measures that have prevented any subsequent deaths.”

Bettina A. Norton


The writer formerly served on the Board of Overseers of Rogerson Communities. Her husband is a resident in the Rogerson House’s Alzheimer’s center.