This piece was written by our friend and colleague, Andrea Leatherdale – RN, BScN, Practical Nursing Program Coordinator at Centennial College.
Depending on a long-term care agency’s policies, when a person with dementia enters the end-stage of life, management/administration may seek to transfer care to an alternate level of care (palliative care unit) away from the familiar long-term care setting. Families are often caught unaware of this practice and often desire their loved one to remain in the known setting until death.
Families benefit from familiarity with staff, continuity of care, the permanent room setting is set as the person’s “home”, often for years, and it is less disruptive at the time when impending loss/grief is occurring.
The Practical Nurse can advocate for families to be informed of the level of care process/policy/practices upon initial admission to the agency. This is more than advanced care directives. It is making sure the family knows the long term care policies and past practices on progression of care from admission to death. The family should know if transfers may occur to/from acute care but also within the long-term care facility if/when their loved ones condition changes.
A key question to the family should ask is “Can the dying person remain in place (“home” room) in the final weeks/days/hours of dying?”
A woman in her late 90’s had been LTC for at least 20 years. She had entered the facility walking and cognitively aware 20 years previous. As her dementia progressed over the years, she was transferred within the facility to the special care unit (secured unit) in the last 10 years of her life. She became familiar with that environment, could navigate room to dining room and back to “her apartment” which was filled with memories, trinkets and objects from her past.
Her family was highly involved and felt comfortable coming to the unit, knowing other residents there as well over the years. Suddenly she experienced a rapid decline which required an acute care transfer. Upon her return to the LTC facility, she was identified as requiring “palliative care”, and administration made plans to transfer her to an alternate unit in the facility. Administration of the agency said she no longer had “special care unit” status and would be transferred to the palliative care unit.
When the family was informed about the decision to move her, they were very surprised and upset. They expected her to be able to remain in the familiar setting until her death. The nursing staff of the special care unit went to the administration to advocate for the resident/family to remain on the unit. However, the administration said the resident no longer fit the criteria of the unit and must be relocated in order to make space for a new admission to special care. The nursing staff on the special care unit said that palliative care could be provided by their staff and they already knew about the resident and had a strong connection with the family to provide support. The special care staff argued that the staff on the other unit would not have time to achieve the same level of trust with the resident and family especially since it was clear that the resident had little time remaining.
The resident’s condition was significantly deteriorated and was apparent death was imminent within days. Administration still said the resident must be transferred off the unit. Nursing staff went to the attending physician, who agreed that the woman should remain in a familiar “home setting” and also went to administration to add that it would not benefit the resident to have a new doctor on a new unit to take over care at this point. Administration still said the resident would be transferred. In the midst of all this, the family was kept informed of nursing and physician advocacy. Unfortunately, the consistent message by administration kept adding more and more stress and worry to the family while they were coming to terms with their mother’s condition. Ultimately, the nursing staff advised the family to advocate for themselves directly to administration. The administrators were still saying no to the family until a member of the family identified themselves as a lawyer and commented that the situation was not fair or legal. Upon this discussion, the administration agreed and the woman remained on the unit for two more days until she passed peacefully with the family present and familiar staff.
Ultimately, the person and family’s needs were able to be met. However, this was not without significant worry and upset at a time when more support was needed. The other resident’s family members were also witness to this (as they were present for the family since they were all consoling each other). The other families could see the process of advocating that the nurses and physician were attempting. This precedent did result in changes to agency policies and allowing a dying person to remain on the special care unit is more common though not guaranteed. Nurses are continuing to advocate for change.
What are your thoughts on moving persons with dementia when death is imminent? Please leave your comments below.