Supporting family caregivers at the end of life: "they don't know what they don't know". 2004

Michael W Rabow, and Joshua M Hauser, and Jocelia Adams
Department of Medicine, University of California, San Francisco/Mount Zion, San Francisco 94143-1732, USA. mrabow@medicine.ucsf.edu

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 physicians to be of service to family members caring for patients at the end of life, including promoting excellent communication with family, encouraging appropriate advance care planning and decision making, supporting home care, demonstrating empathy for family emotions and relationships, and attending to family grief and bereavement. In caring well for family caregivers at the end of life, physicians may not only improve the experiences of patients and family but also find greater sustenance and meaning in their own work.

UI MeSH Term Description Entries
D008297 Male Males
D010166 Palliative Care Care alleviating symptoms without curing the underlying disease. (Stedman, 25th ed) Palliative Treatment,Palliative Supportive Care,Palliative Surgery,Palliative Therapy,Surgery, Palliative,Therapy, Palliative,Care, Palliative,Palliative Treatments,Supportive Care, Palliative,Treatment, Palliative,Treatments, Palliative
D010190 Pancreatic Neoplasms Tumors or cancer of the PANCREAS. Depending on the types of ISLET CELLS present in the tumors, various hormones can be secreted: GLUCAGON from PANCREATIC ALPHA CELLS; INSULIN from PANCREATIC BETA CELLS; and SOMATOSTATIN from the SOMATOSTATIN-SECRETING CELLS. Most are malignant except the insulin-producing tumors (INSULINOMA). Cancer of Pancreas,Pancreatic Cancer,Cancer of the Pancreas,Neoplasms, Pancreatic,Pancreas Cancer,Pancreas Neoplasms,Pancreatic Acinar Carcinoma,Pancreatic Carcinoma,Acinar Carcinoma, Pancreatic,Acinar Carcinomas, Pancreatic,Cancer, Pancreas,Cancer, Pancreatic,Cancers, Pancreas,Cancers, Pancreatic,Carcinoma, Pancreatic,Carcinoma, Pancreatic Acinar,Carcinomas, Pancreatic,Carcinomas, Pancreatic Acinar,Neoplasm, Pancreas,Neoplasm, Pancreatic,Neoplasms, Pancreas,Pancreas Cancers,Pancreas Neoplasm,Pancreatic Acinar Carcinomas,Pancreatic Cancers,Pancreatic Carcinomas,Pancreatic Neoplasm
D010817 Physician-Patient Relations The interactions between physician and patient. Doctor-Patient Relations,Doctor Patient Relations,Physician Patient Relations,Physician Patient Relationship,Doctor Patient Relation,Doctor-Patient Relation,Physician Patient Relation,Physician Patient Relationships,Physician-Patient Relation,Relation, Doctor Patient,Relation, Doctor-Patient,Relation, Physician Patient,Relation, Physician-Patient,Relations, Doctor Patient,Relations, Doctor-Patient,Relations, Physician Patient,Relations, Physician-Patient,Relationship, Physician Patient,Relationships, Physician Patient
D010819 Physician's Role The expected function of a member of the medical profession. Physicians' Role,Physician Role,Physician's Roles,Physicians Role,Physicians' Roles,Role, Physician's,Role, Physicians',Roles, Physician's,Roles, Physicians'
D005195 Family Relations Behavioral, psychological, and social relations among various members of the nuclear family and the extended family. Family Relationship,Family Dynamics,Family Relationships,Dynamic, Family,Dynamics, Family,Family Dynamic,Family Relation,Relation, Family,Relations, Family,Relationship, Family,Relationships, Family
D006699 Home Care Services Community health and NURSING SERVICES providing coordinated multiple services to the patient at the patient's homes. These home-care services are provided by a visiting nurse, home health agencies, HOSPITALS, or organized community groups using professional staff for care delivery. It differs from HOME NURSING which is provided by non-professionals. Domiciliary Care,Home Health Care,Care Services, Home,Home Care,Services, Home Care,Care, Domiciliary,Care, Home,Home Care Service,Service, Home Care
D006760 Hospitalization The confinement of a patient in a hospital. Hospitalizations
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000223 Adaptation, Psychological A state of harmony between internal needs and external demands and the processes used in achieving this condition. (From APA Thesaurus of Psychological Index Terms, 8th ed). Behavior, Adaptive,Healthy Adaptation,Positive Adaptation,Psychological Recovery,Adaptation, Psychologic,Adjustment,Psychological Adaptation,Adaptation, Healthy,Adaptation, Positive,Adaptive Behavior,Adaptive Behaviors,Healthy Adaptations,Positive Adaptations,Psychologic Adaptation,Psychological Recoveries,Recovery, Psychological

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