In one of the more disturbing encounters I’ve had in long-term care — in a 5-Star deficiency-free nursing home — I offered my condolences to an aide on the loss of a resident she’d cared for over a period of two years.
The aide, a heavyset woman, smiled as she told me that she’d known the resident was dying and had urged the nurse to send her to the hospital quickly. The reason? She didn’t want to wrap the body of the equally heavyset resident after she died.
The resident died among strangers in an ambulance on the way to the hospital.
While I’d like to think the incident was an anomaly, I suspect many if not most nursing homes lack a mission statement for end-of-life care and that most teams can be better prepared for the last months and days of their residents.
Without leadership and training, disorganization and staff priorities can derail the care philosophy of the facility.
Providing decent end-of-life care is more than determining if a resident is DNR or full code. It includes recognizing that someone may be nearing the end of life, referring him or her to hospice while they’re most able to benefit from it, communicating regularly with the resident and their family about their needs, and treating the dying person, their remains and their belongings with respect.
Impact on families
Incidents such as the one above reflect poorly on the organization, even if family members don’t realize that it could have been averted with proper staff training. We often hear how important it is to make a good first impression, but as community institutions relying on reputation and referrals, it’s also essential to make a good last impression.
I’ve heard family members comment that they hadn’t always been pleased with the care at the home but they felt that their mother’s death had been handled with great respect. They left with a feeling of overall satisfaction.
Other families had been reasonably satisfied all along, but departed from the facility in shocked dismay at the end of their parent’s life at the poor communication, insufficient pain management and casual disregard for the belongings of the deceased.
Residents are closely observing how their neighbors’ deaths are handled because they know that this is how they will be treated when their time comes. Based on my experience, the things they find most disturbing are inadequate pain management, unacknowledged deaths and seeing the belongings of their friends removed in clear plastic garbage bags rather than in labeled boxes. They find it most comforting when they see that patients are referred to hospice, surrounded by loved ones, sleeping calmly through the night and when there’s a discussion of the loss among the residents, staff and chaplaincy.
The ways in which facilities handle deaths can have a big impact on staff members as well. As I suggest in “Absenteeism and turnover? Death anxiety could be the cause,” lack of attention to the experience of staff members in handling loss can contribute to employee turnover.
According to the Stanford School of Medicine, 20% of Americans die in nursing homes annually, subjecting staff members to regular losses. In order for them to provide dignified and respectful care of the dying, they need to be taught proper end of life procedures and to have the impact of these losses acknowledged and the opportunity to grieve as needed.
The initial inspiration for this article came after I listened to the 3/13/18 GeriPal Good Deaths Podcast and read some of the recommended articles1, 2 in which palliative care experts address the disconnect between the wishes of patients compared to those of family members and medical professionals. (Families and professionals place a higher priority on pain management, for example, whereas the patients themselves would prefer to think clearly even if it means more pain.)
Aligning these goals is laudable and something to strive for once the basics are in place.
For those seeking a sample policy and procedure, here is a straightforward example from the UK: Policy on End of Life.
For a more detailed discussion of end-of-life care in a long-term setting, see Guidelines for End-of-Life Care in Long-Term Care Facilities.
For some suggestions in how to handle end of life care, read “Creating better deaths in long-term care.”
If your facility has an end-of-life policy, please consider adding a link to it in the comments section. It was surprisingly difficult to locate one online and it would help us move forward on this issue.
Eleanor Feldman Barbera, PhD, author of The Savvy Resident’s Guide, is an 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 American Society of Business Publication Editors Midwest Regional competition. A speaker and consultant with over 20 years of experience as a psychologist in long-term care, she maintains her own award-winning website at MyBetterNursingHome.com.