In their own words: patients and families define high-quality palliative care in the intensive care unit. 2010

Judith E Nelson, and Kathleen A Puntillo, and Peter J Pronovost, and Amy S Walker, and Jennifer L McAdam, and Debra Ilaoa, and Joan Penrod
Division of Pulmonary, Critical Care, and Sleep Medicine, and Hertzberg Palliative Care Institute, Mount Sinai School of Medicine, New York, NY, USA. judith.nelson@mssm.edu

OBJECTIVE Although the majority of hospital deaths occur in the intensive care unit and virtually all critically ill patients and their families have palliative needs, we know little about how patients and families, the most important "stakeholders," define high-quality intensive care unit palliative care. We conducted this study to obtain their views on important domains of this care. METHODS Qualitative study using focus groups facilitated by a single physician. METHODS A 20-bed general intensive care unit in a 382-bed community hospital in Oklahoma; 24-bed medical-surgical intensive care unit in a 377-bed tertiary, university hospital in urban California; and eight-bed medical intensive care unit in a 311-bed Veterans' Affairs hospital in a northeastern city. METHODS Randomly-selected patients with intensive care unit length of stay >=5 days in 2007 to 2008 who survived the intensive care unit, families of survivors, and families of patients who died in the intensive care unit. METHODS None. RESULTS Focus group facilitator used open-ended questions and scripted probes from a written guide. Three investigators independently coded meeting transcripts, achieving consensus on themes. From 48 subjects (15 patients, 33 family members) in nine focus groups across three sites, a shared definition of high-quality intensive care unit palliative care emerged: timely, clear, and compassionate communication by clinicians; clinical decision-making focused on patients' preferences, goals, and values; patient care maintaining comfort, dignity, and personhood; and family care with open access and proximity to patients, interdisciplinary support in the intensive care unit, and bereavement care for families of patients who died. Participants also endorsed specific processes to operationalize the care they considered important. CONCLUSIONS Efforts to improve intensive care unit palliative care quality should focus on domains and processes that are most valued by critically ill patients and their families, among whom we found broad agreement in a diverse sample. Measures of quality and effective interventions exist to improve care in domains that are important to intensive care unit patients and families.

UI MeSH Term Description Entries
D007362 Intensive Care Units Hospital units providing continuous surveillance and care to acutely ill patients. ICU Intensive Care Units,Intensive Care Unit,Unit, Intensive Care
D008297 Male Males
D008875 Middle Aged An adult aged 45 - 64 years. Middle Age
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
D010348 Patient Care Team Care of patients by a multidisciplinary team usually organized under the leadership of a physician; each member of the team has specific responsibilities and the whole team contributes to the care of the patient. Health Care Team,Interdisciplinary Health Team,Medical Care Team,Multidisciplinary Care Team,Multidisciplinary Health Team,Healthcare Team,Care Team, Health,Care Team, Medical,Care Team, Multidisciplinary,Care Team, Patient,Care Teams, Health,Care Teams, Patient,Health Care Teams,Health Team, Interdisciplinary,Health Team, Multidisciplinary,Healthcare Teams,Interdisciplinary Health Teams,Medical Care Teams,Multidisciplinary Care Teams,Multidisciplinary Health Teams,Patient Care Teams,Team, Health Care,Team, Healthcare,Team, Interdisciplinary Health,Team, Medical Care,Team, Multidisciplinary Care,Team, Multidisciplinary Health,Team, Patient Care,Teams, Interdisciplinary Health
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
D011368 Professional-Family Relations The interactions between the professional person and the family. Professional Family Relationship,Family Relationship, Professional,Family Relationships, Professional,Professional Family Relations,Professional Family Relationships,Professional-Family Relation,Relation, Professional-Family,Relations, Professional-Family,Relationship, Professional Family,Relationships, Professional Family
D011787 Quality of Health Care The levels of excellence which characterize the health service or health care provided based on accepted standards of quality. Pharmacy Audit,Quality of Care,Quality of Healthcare,Audit, Pharmacy,Care Quality,Health Care Quality,Healthcare Quality,Pharmacy Audits
D003142 Communication The exchange or transmission of ideas, attitudes, or beliefs between individuals or groups. Miscommunication,Misinformation,Social Communication,Communication Programs,Communications Personnel,Personal Communication,Communication Program,Communication, Personal,Communication, Social,Communications, Social,Miscommunications,Misinformations,Personnel, Communications,Program, Communication,Programs, Communication,Social Communications
D005260 Female Females

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