Suffering and Dying Nursing Home Residents: The Role of Family Members
As American society ages, nursing homes will increasingly be the site of death for many people. Therefore, it is essential that nurses, as the primary professional in nursing homes, are prepared to provide high-quality, compassionate, end-of-life care. This article describes a qualitative study of nursing home nurses' perceptions of suffering of nursing home residents at the end of life. Analysis of the data revealed that nurses defined suffering of residents to be physical, psychosocial, and existential. They also believed that family members were involved in the suffering of nursing home residents, and the suffering has a significant impact on the nurses. This article describes themes associated with these categories and highlights the need for nurses to act as knowledgeable guides for family members making end-of-life treatment decisions. This study holds important implications for nursing practice and education.

Mrs. B. is a retired first grade teacher who suffers from end-stage dementia. She cannot speak or recognize speech. She is incontinent, her muscles are rigid, and her swallowing is impaired. After several bouts of aspiration pneumonia, her family decided to have a feeding tube inserted. On her bedside table are several pictures of her smiling grandchildren. Mrs. B. moans quietly as a nurse repositions her in bed. The nurse strokes her face, and Mrs. B. turns toward the nurse's touch. The nurse refills the bag hanging next to the bed with tube feeding formula. As the nurse leaves Mrs. B.'s room, she passes another nurse in the hall and says, "If my family ever agrees to a tube feed for me, I will haunt them forever. How can they make their mother suffer like this?"

American society is aging rapidly and challenging nurses and society to care for a growing population of frail elders, many of whom live in nursing homes. There are currently 1.5 million elderly people living in nursing homes in America. In 2000, nearly 536,000 people died in nursing homes in the United States, and this number is expected to grow. Moreover, this underestimates the true number because it does not account for patients who died in ambulances or emergency rooms after being transferred from nursing homes. Although currently 20% of the deaths in the United States occur in nursing homes, this percentage is projected to double by 2020. It is essential that nursing home staff and hospice care providers are prepared to provide high-quality, compassionate, end-of-life (EOL) care for elderly residents in nursing homes.

Death and suffering in nursing homes have been called an "elaborate cover-up scheme," concealed and denied. Nursing homes have been described as "heaven's waiting room," a place where death is cold, lonely, and painful. Sufficient evidence concludes that EOL care in nursing homes needs improvement. A survey of 176 nurses, aides, and family members found that most residents experienced pain (86%), problems with personal cleanliness (81%), dyspnea (75%), incontinence (59%), and fatigue (52%) in the last 3 months of life. Only 58% of family members of recently deceased nursing home residents believed their loved ones experienced a "good death" as they would have wanted it to be. Similarly, in a study of family members' perceptions of EOL care in various settings, the proportion of positive comments was lowest for nursing home care(51%). Negative comments about EOL care emphasized poorly trained or inattentive staff and remoteness of physicians. Several informants even questioned whether poor quality of care resulted in premature death or increased suffering.

Family members play an important role for many residents in nursing homes, particularly at the end of life. They provide a basic link to the outside world and the resident's history, personal biography, and life values. Frequent contact with family members also contributes to nursing home residents' well-being.

Unfortunately, family involvement in nursing homes is fraught with difficulties. Family members are unsure how they fit into the nursing home environment, and conflicts between the expectations of family members and the nursing home staff arise. Several studies have found that tension and conflict between nursing home staff and family members because of disparate goals, inadequate communication, and fear of criticism and confrontation. The aim of this study was to further explore the relationship between nursing home nurses and family members by identifying and describing nurses' perception of family members' involvement in EOL decisions for residents. A better understanding of the nurses' perceptions may improve residents' care by uncovering effective strategies to facilitate communication and partnership between family members and nurses.