“I just think that we should be informed” a qualitative study of family involvement in advance care planning in nursing homes

Abstract

BackgroundAs part of the research project “End-of-life Communication in Nursing Homes. Patient Preferences and Participation”, we have studied how Advance Care Planning (ACP) is carried out in eight Norwegian nursing homes. The concept of ACP is a process for improving patient autonomy and communication in the context of progressive illness, anticipated deterioration and end-of-life care. While an individualistic autonomy based attitude is at the fore in most studies on ACP, there is a lack of empirical studies on how family members’ participation and involvement in ACP- conversations may promote nursing home patients’ participation in decisions on future treatment and end-of-life care. Based on empirical data and family ethics perspectives, the purpose of this study is to add insights to the complexity of ACP-conversations and illuminate how a family ethics perspective may improve the quality of the ACP and promote nursing home patients’ participation in advance care planning.MethodsParticipant observations of ACP-conversations in eight nursing homes. The observations were followed by interviews with patients and relatives together on how they experienced being part of the conversation, and expressing their views on future medical treatment, hospitalization and end-of-life issues.ResultsWe found that the way nursing home patients and relatives are connected and related to each other, constitutes an intertwined unit. Further, we found that relatives’ involvement and participation in ACP- conversations is significant to uncover, and give the nursing home staff insight into, what is important in the nursing home patient’s life at the time. The third analytical theme is patients’ and relatives’ shared experiences of the dying and death of others. Drawing on past experiences can be a way of introducing or talking about death.ConclusionsAn individual autonomy approach in advance care planning should be complemented with a family ethics approach. To be open to family ethics when planning for the patient’s future in the nursing home is to be open to diversity and nuances and to the significance of the patient’s former life and experiences.

Feasibility and acceptability of introducing advance care planning on a thoracic medicine inpatient ward: an exploratory mixed method study

“…This gave clues about the patients’ values and coping strategies, important information for future decision-making. This correlates to findings of Thoresen and Lillemoen when studying ACP conversations in nursing homes 14…”

“…Good decision-making processes are increasingly warranted in clinical medicine with the heightened focus on patient autonomy, but the need for and openness toward ACP might vary between cultures and different diagnostic groups 3 6 9 10. In Norway, ACP is still in its infancy and not used routinely, and there is a lack of research addressing how ACP can support patients with advanced pulmonary disease 3 11–15…”

Adaptation and evaluation of the Family Involvement and Alienation Questionnaire for use in the care of older people, psychiatric care, palliative care and diabetes care

“…For family members, involvement in the professional care has proven to be important, both in providing support for the ill person and the care unit and in managing their own lives (Henriksson & Andershed, ; Marquis, Freegard, & Hoogland, ; Piippo & Aaltonen, ; van Dam et al., ). Being met with respect and having a good communication with healthcare professionals is of great importance for the family members’ feelings of being meaningfully involved in the care (Andershed, Ewertzon, & Johansson, ; Goodwin & Happell, ; Thoresen & Lillemoen, ). The family members’ needs for information, support and cooperation with the healthcare professionals have been confirmed in different contexts, such as in the care of older people (Laitinen & Isola, ; Werner et al., ), psychiatric care (Doornbos, ; Rose, Mallinson, & Walton‐Moss, ), palliative care (Andershed, ; Holm et al., ; Janze & Henriksson, ) and diabetes care (van Dam et al., ).…”

Death Awareness and Death Preparation Experiences in Hospitalized Elderly People in a Long-Term Care Facility

“…Especially, the elderly people regarded their children as important decision makers about their death. Therefore it seems necessary for long-term care facilities to discuss death and related decision making with families of patients [14] [15].…”