Eleanor Feldman Barbera, Ph.D.

There are moments in life that engender important questions. When an individual is born, we ask, “Is it a boy or a girl?” When the person dies, we ask, “What happened?” In long-term care, we’re not around for the first question, but we often are for the second.

Though infrequently observed by those not involved with direct care, how someone dies is a very important part of the culture of the long-term care organization.

In “Remembering the Lost,” New Old Age blogger Paula Span reports on the typical experience of loss in LTC, where deaths are often barely acknowledged. She describes two alternative programs that offer a way to recognize individuals who have lived and died in LTC.

In “Better death notifications could improve CNA work experience, study suggests,” McKnight’s notes that how the deaths of residents are communicated to CNAs affects the way they feel about their work. The best way to find out, the study concludes, is to be told prior to beginning a work shift. The hardest way to learn of a death is to arrive at the resident’s room and find it emptied of belongings or filled with a new resident.

A front-line perspective

Like others performing direct care, I’ve had to cope with the loss of residents. I felt sucker-punched by the deaths that occurred early in my LTC career. My youth, inexperience, denial, and lack of training in issues around death made the demise of very ill or very old residents seem sudden and shocking.

I quickly got some training in thanatology (the study of death) and I’ve had many years of experience since then. I learned to protect my heart and love with a little cushion of distance around me.

Echoing the findings of the study referred to above, my worst experience by far was coming in to work to find the room empty of a beloved patient, the bed stripped and raised as high as possible after the mattress had been cleaned. By contrast, once an aide rushed to me the moment I got off the elevator to visit one of my patients, telling me she’d passed the night before. I thanked her profusely, hurried to the bathroom and cried.

My rituals around loss do still occasionally involve crying in the bathroom, but more often since I learned to protect my heart I look upward and say, “Rest in peace, John.” Or Mary. Or Viola. Sometimes I talk with other staff members who were close to the resident. Or I write about the person who died.

Creating better ways to address losses in LTC

My personal rituals were developed in the absence of formal, facility-sanctioned acknowledgement of the deaths of residents. As a shrink, I was aware of the need to get training and to recognize the personal impact of these losses.

I suspect that many new staff members don’t make it past the “sucker-punch” phase of losing residents. Instead, they quit, so that new staff members must be hired and trained. For ideas on how to reduce this likelihood, read Absenteeism and turnover in LTC? Death anxiety could be the cause.

Facilities can improve the experience of death and dying for the residents, staff and family by addressing various aspects of the process such as:

• Training select staff members so that they feel comfortable with and proficient in discussing advance directives, palliative care, and hospice with residents and families. Even professionals who should, in theory, be expert in these conversations often have not had specific training on these issues.

• Reducing the suffering of the dying resident by offering palliative care or hospice sooner rather than later. Studies show that LTC residents generally receive such care only briefly rather than when it would have been of most benefit to them.

• Encouraging families to contact additional family members so that they can be present toward the end of life.

• Caring for the remains in a respectful manner, such as draping the body with a special cloth when passing through the hall.

• Acknowledging the loss of residents within the LTC community and creating a ritual to acknowledge the loss. (It’s not a HIPAA violation to let other residents know someone died.) The residents are watching and realize that how we treat their peers is how we’ll treat them when they die.

• Creating a system for letting staff members with close contact with particular residents know of the loss in advance of their work shift.

As LTC providers, we strive to create a culture of caring within our organizations. Despite the discomfort many feel around death and dying, it’s important to create policies so that our caring extends to the very end of life, and actually beyond.

Eleanor Feldman Barbera, PhD, author of The Savvy Resident’s Guide, is a 2014 Award of Excellence winner in the Blog Content category of the APEX Awards for Publication Excellence program. She also is the Gold Medalist in the Blog-How To/Tips/Service category of the 2014 American Society of Business Publication Editors Midwest Regional competition. A speaker and consultant with nearly 20 years of experience as a psychologist in long-term care, she maintains her own award-winning website at MyBetterNursingHome.com.