BACKGROUND: A basic tenet of palliative care is to maintain an individual's control over the dying process. However, when decline occurs quickly, as may be the case in advanced cancer, transition of responsibility for illness management to a family caregiver may become necessary when care takes place in the home. OBJECTIVE: The aim of this study was to understand the decision-making process that occurs between a dying individual and his or her family caregiver. METHODS: Participants in this grounded theory study were selected by purposive and theoretical sampling methods. Data were collected and analyzed using a constant comparison approach. RESULTS: The core category covering captured the inordinate efforts taken by informal caregivers to ensure that their family member would be able to die in the manner of his or her choosing. The basic social process, dancing on the stairs, chronicled the families' decision-making process as they navigated through this delicate and precarious end stage of life. CONCLUSIONS: Dancing on the stairs required a close relationship between 2 people who were willing to remain engaged with each other, despite the difficulties they faced. This decision-making process may be applicable to other health care transitions in people's lives that need to be managed with another person. IMPLICATIONS FOR PRACTICE: Palliative care education for nurses in all care health settings may ease transitions for end-stage patients. Health promotion initiatives designed to educate the lay public about advance directives and end-stage illness management in a home setting may help to prepare family caregivers for their future responsibilities.
BACKGROUND: A basic tenet of palliative care is to maintain an individual's control over the dying process. However, when decline occurs quickly, as may be the case in advanced cancer, transition of responsibility for illness management to a family caregiver may become necessary when care takes place in the home. OBJECTIVE: The aim of this study was to understand the decision-making process that occurs between a dying individual and his or her family caregiver. METHODS:Participants in this grounded theory study were selected by purposive and theoretical sampling methods. Data were collected and analyzed using a constant comparison approach. RESULTS: The core category covering captured the inordinate efforts taken by informal caregivers to ensure that their family member would be able to die in the manner of his or her choosing. The basic social process, dancing on the stairs, chronicled the families' decision-making process as they navigated through this delicate and precarious end stage of life. CONCLUSIONS: Dancing on the stairs required a close relationship between 2 people who were willing to remain engaged with each other, despite the difficulties they faced. This decision-making process may be applicable to other health care transitions in people's lives that need to be managed with another person. IMPLICATIONS FOR PRACTICE: Palliative care education for nurses in all care health settings may ease transitions for end-stage patients. Health promotion initiatives designed to educate the lay public about advance directives and end-stage illness management in a home setting may help to prepare family caregivers for their future responsibilities.
Authors: Tamryn F Gray; Deborah Forst; Ryan D Nipp; Joseph A Greer; Jennifer S Temel; Areej El-Jawahri Journal: J Palliat Med Date: 2020-09-30 Impact factor: 2.947