Families and residents are asked at the beginning of their journey into long-term care for directions on how they want care providers to proceed to address illness and imminent death.
A request for advanced interventions to treat illness is usually a request to defer death and requires hospitalization at the end of life.
A request to limit interventions to comfort care usually means no resuscitation, no ventilators, no tube feeding, possible surgery, or treatments like dialysis. It also means providing sufficient pain control to improve quality of life even if it may hasten death. It includes personal care for dignity and comfort, individual feeding of specially desired foods and liquids, and setting up space for the family to spend more time with the resident. Hospice staff can be brought to the facility at the end of life and assist other staff with special interventions to increase comfort. Paramedics will not be called when death occurs, rather the physician will be called to “pronounce” the time of death. The facility will notify family, if they are not present, and the funeral home, if appropriate.
Residents with progressive dementia, especially of the Alzheimer’s type, will, if they do not die sooner from another medical condition, enter a vegetative state when they will refuse food and liquids. It is fairly universal in the disease and leads to death. It is also painfully difficult for families to watch, not least because starvation seems unacceptable in our society, and there is a temptation to intervene. Artificial nutrition and hydration from tube feeding and intravenous treatments are available and families may choose this route. However, these interventions have not been known to extend life, as the body of the advanced Alzheimer’s patient appears unable to absorb the nutrients. These interventions also have medical complications of their own for the resident and family to navigate.
In long-term care facilities, nursing staff are on the front lines with death and usually communicate with families about its imminence. Physicians are called and orders for treatment and medication given, but nurses are best able to provide families with information and possible timelines. Receptionists, aides, social services staff, therapists, and administrators are not able to guide families beyond what they have been told by nurses.
When a resident is very ill and near death, families should request protocols for remaining in contact with nursing staff for their own comfort and reassurance. While “the good death” we continue to see on television and in movies rarely occurs, the process of dying in a long- term care facility can be made relatively comfortable and pain-free with cooperation among staff, physicians and family members. The best way to ensure this is to think of the “unthinkable” ahead of time, plan, and utilize the staff of the facility to implement a care plan acceptable for everyone.