Supporting Family Caregivers at the End of Life

Abstract

Mr R was a 70-year-old man, legally blind from retinitis pigmentosa, who was diagnosed as having pancreatic cancer in January 2002. He underwent a Whipple procedure at an urban academic medical center and then received radiation therapy and chemotherapy with fluorouracil and gemcitabine. To alleviate intermittent bowel obstructions, he had a ventilating gastrostomy tube placed for decompression of his abdomen. Over the next 9 months, he was admitted to the hospital several times for infections at the site of his gastrostomy tube, diarrhea, vomiting, and dehydration.He lived at home with his wife, Mrs R, who was also his partner in the marketing firm he had founded. He had one daughter, Ms L, a psychologist who lived locally, and a son, a history professor, who lived far away but visited every few weeks. Both children were active caregivers over the course of their father's illness. Despite Mrs R's own severe rheumatoid arthritis and other health issues, she was determined to care for her husband at home with the assistance of a home care nurse, Ms P, and a housekeeper to aid with daily chores.As Mr R's health deteriorated, a close friend of Ms L's advised her about a local in-hospital palliative care unit. In November 2002, when Mr R's pain and nausea became so severe that they could not be managed at home, he was admitted to the palliative care unit. At admission, Mr R was alert and oriented but bed bound due to weakness. He and his family hoped his symptoms could be quickly controlled so that he could return home. He received intravenous hydromorphone and dexamethasone for pain and intravenous haloperidol and frequent gastrostomy tube flushings for his nausea. His symptoms initially improved and discussions ensued about his transition home. Although scheduled to go home with hospice care, his condition then declined rapidly to a point where his family did not think they could care for him at home, even with in-Even for patients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains patients at the end of life. The amorphous relationship between physicians and the families of patients at the end of life presents both challenges and opportunities for which physicians may be unprepared. Families play important roles in the practical and emotional aspects of patient care and in decision making at the end of life. At the same time, family members may carry significant burdens as a result of their work. Through the perspectives of the wife, daughter, and home care nurse of a patient who died from pancreatic cancer, we illustrate the range of family caregiver experiences and suggest potentially helpful physician interventions. We describe 5 burdens of family caregiving (time and logistics, physical tasks, financial costs, emotional burdens and mental health risks, and physical health risks) and review the responsibilities of physicians to family caregivers. Based on available evidence, we identify 5 areas of opportunity for physic...

Difficulty Assisting with Health Care Tasks Among Caregivers of Multimorbid Older Adults

“…Physicians, nurses, and social workers may have a role to play in detecting family caregivers who are experiencing difficulty with specific HCTs and problem solving with patients and caregivers. Improving caregiver mental health through reduced difficulty with HCTs could also improve patient outcomes 40,41 in that patients with effective caregivers often show better adherence to treatment plans 42,43 and improved functioning. 44 However, it remains unclear how physicians can best support caregivers in the health care setting given the lack of available resources, knowledge of how to best support family caregivers, and the time constraints of an average visit.…”

“…44 However, it remains unclear how physicians can best support caregivers in the health care setting given the lack of available resources, knowledge of how to best support family caregivers, and the time constraints of an average visit. 40 A careful examination of a patient's treatment plan and the associated HCTD experienced by both the patient and the caregiver may help the physician to reduce needless complexity and prioritize which health care tasks are most important. Potential interventions aimed at improving caregiver self-efficacy to perform health care related tasks could also lead to a decrease in HCTD; however more research is needed to determine this.…”

The transition of palliative care from the hospital to the home: a narrative review of experiences of patients and family caretakers

“…In the diagnosis of the disease, several patients and family caretakers were surprised upon discovering that the disease had no cure or that they were in a terminal phase. [15][16][17] Regarding the progress of the disease, the family caretakers experienced bewilderment with the quick arrival of the most advanced stages or with the rapid deterioration and the dependence associated to it. 15,17,18 It was, thus, expressed by a caregiver of a patient with Parkinson's: "I knew the patient was deteriorating, but did not expect his dying so soon".…”

“…[15][16][17] Regarding the progress of the disease, the family caretakers experienced bewilderment with the quick arrival of the most advanced stages or with the rapid deterioration and the dependence associated to it. 15,17,18 It was, thus, expressed by a caregiver of a patient with Parkinson's: "I knew the patient was deteriorating, but did not expect his dying so soon". 17:733 Also, family caretakers identified that upon treating the prognosis and goals in patient care there was a certain hesitation or lack of knowledge from the professionals to speak of the theme.…”

Providing Adaptive Health Updates Across the Personal Social Network

“…Further, the informal, horizontal ties that exist between an individual and their preexisting family and friends tend to have greater depth and longevity than those formed online in artificial social networks (Churchill & Halverson, 2005;Ferlander, 2007). However, if network members are to provide support, they need to be kept apprised of the ego's needs (Azoulay et al, 2005;Cohen, 2004;O'Mara, 2005;Rabow, Hauser, & Adams, 2004). Although some small studies have been conducted which showed that appropriate social support for parents has benefits (Ireys, Chernoff, DeVet, & Kim, 2001;Norbeck & Tilden, 1983), very little research had been conducted into the social support needs of parents (and of patients in general), and their information-sharing choices in the context of a health crisis.…”