Perspectives on advance care planning needs of persons with advanced dementia from their surrogates and clinicians
Objectives: This study was designed to understand the experience and needs surrounding advance care planning (ACP) discussions for surrogate decision-makers of persons with advanced dementia (PWAD). Methods: Semi-structured qualitative interviews based on end-of-life communication models with a conv...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Elsevier
2023-12-01
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| Series: | PEC Innovation |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2772628223001218 |
| _version_ | 1797383599946727424 |
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| author | Sara E. Golden Felipe Rubim Rekha Thammana Natalie Disher Kelly C. Vranas Joan M. Teno Seiko Izumi Hyunjee Kim Jennifer Tjia Donald R. Sullivan |
| author_facet | Sara E. Golden Felipe Rubim Rekha Thammana Natalie Disher Kelly C. Vranas Joan M. Teno Seiko Izumi Hyunjee Kim Jennifer Tjia Donald R. Sullivan |
| author_sort | Sara E. Golden |
| collection | DOAJ |
| description | Objectives: This study was designed to understand the experience and needs surrounding advance care planning (ACP) discussions for surrogate decision-makers of persons with advanced dementia (PWAD). Methods: Semi-structured qualitative interviews based on end-of-life communication models with a convenience sample of 17 clinicians, and 15 surrogates of PWAD. We used a hybrid approach of deductive and inductive thematic analysis. Results: Two main themes emerged. 1)Deficits in communication: Often surrogates did not fully comprehend the disease trajectory or medical treatments, like the likelihood of pneumonia and use of mechanical ventilation, nor concepts related to ACP, particularly legal documents and orders such as Do Not Hospitalize, which made decision-making challenging as perceived by clinicians. 2)Decision-making conflicts: Clinicians perceived a disconnect between surrogates' understanding of their loved one's preferences and knowing how or when to operationalize them. Conclusions: Significant gaps in knowledge surrounding disease trajectory and complications, such as pneumonia, and aspects of ACP, exist. These gaps create decision-making challenges for surrogates and clinicians alike. Innovation: This study assessed both clinicians and surrogate decision-makers' perspectives on communication and decision-making concerning care preferences, goals, and ACP. The study findings from a national cohort can inform decision-support interventions for clinicians and surrogate decision-makers of PWAD. |
| first_indexed | 2024-03-08T21:23:24Z |
| format | Article |
| id | doaj.art-962309f372e64cd1b6874f27912a903e |
| institution | Directory Open Access Journal |
| issn | 2772-6282 |
| language | English |
| last_indexed | 2024-03-08T21:23:24Z |
| publishDate | 2023-12-01 |
| publisher | Elsevier |
| record_format | Article |
| series | PEC Innovation |
| spelling | doaj.art-962309f372e64cd1b6874f27912a903e2023-12-21T07:38:59ZengElsevierPEC Innovation2772-62822023-12-013100241Perspectives on advance care planning needs of persons with advanced dementia from their surrogates and cliniciansSara E. Golden0Felipe Rubim1Rekha Thammana2Natalie Disher3Kelly C. Vranas4Joan M. Teno5Seiko Izumi6Hyunjee Kim7Jennifer Tjia8Donald R. Sullivan9Center to Improve Veteran Involvement in Care, VA Portland Health Care System (VAPORHCS), Portland, OR, USA; Division of Pulmonary, Allergy, and Critical Care Medicine, Oregon Health & Science University (OHSU), Portland, OR, USA; Corresponding author at: 3710 SW US Veterans Hospital Rd. R&D 66, Portland, OR 97239, USA.Center to Improve Veteran Involvement in Care, VA Portland Health Care System (VAPORHCS), Portland, OR, USA; Division of Pulmonary, Allergy, and Critical Care Medicine, Oregon Health & Science University (OHSU), Portland, OR, USAGeriatrics and Palliative Care, Division of Rehabilitation and Long-Term Care, VAPORHCS, Portland, OR, USA; Department of Hematology and Medical Oncology, OHSU, Portland, OR, USACenter to Improve Veteran Involvement in Care, VA Portland Health Care System (VAPORHCS), Portland, OR, USACenter to Improve Veteran Involvement in Care, VA Portland Health Care System (VAPORHCS), Portland, OR, USA; Section of Pulmonary and Critical Care Medicine, VAPORHCS, Portland, OR, USAHealth Services, Policy, and Practice, Brown University, Providence, RI, USASchool of Nursing, OHSU, Portland, OR, USADivision of Emergency Medicine, OHSU, Portland, OR, USADepartment of Population and Quantitative Health Sciences, UMass Chan Medical School, Worcester, MA, USACenter to Improve Veteran Involvement in Care, VA Portland Health Care System (VAPORHCS), Portland, OR, USA; Division of Pulmonary, Allergy, and Critical Care Medicine, Oregon Health & Science University (OHSU), Portland, OR, USAObjectives: This study was designed to understand the experience and needs surrounding advance care planning (ACP) discussions for surrogate decision-makers of persons with advanced dementia (PWAD). Methods: Semi-structured qualitative interviews based on end-of-life communication models with a convenience sample of 17 clinicians, and 15 surrogates of PWAD. We used a hybrid approach of deductive and inductive thematic analysis. Results: Two main themes emerged. 1)Deficits in communication: Often surrogates did not fully comprehend the disease trajectory or medical treatments, like the likelihood of pneumonia and use of mechanical ventilation, nor concepts related to ACP, particularly legal documents and orders such as Do Not Hospitalize, which made decision-making challenging as perceived by clinicians. 2)Decision-making conflicts: Clinicians perceived a disconnect between surrogates' understanding of their loved one's preferences and knowing how or when to operationalize them. Conclusions: Significant gaps in knowledge surrounding disease trajectory and complications, such as pneumonia, and aspects of ACP, exist. These gaps create decision-making challenges for surrogates and clinicians alike. Innovation: This study assessed both clinicians and surrogate decision-makers' perspectives on communication and decision-making concerning care preferences, goals, and ACP. The study findings from a national cohort can inform decision-support interventions for clinicians and surrogate decision-makers of PWAD.http://www.sciencedirect.com/science/article/pii/S2772628223001218QualitativeLong-term careQuality of lifeSurrogatesCaregivers |
| spellingShingle | Sara E. Golden Felipe Rubim Rekha Thammana Natalie Disher Kelly C. Vranas Joan M. Teno Seiko Izumi Hyunjee Kim Jennifer Tjia Donald R. Sullivan Perspectives on advance care planning needs of persons with advanced dementia from their surrogates and clinicians PEC Innovation Qualitative Long-term care Quality of life Surrogates Caregivers |
| title | Perspectives on advance care planning needs of persons with advanced dementia from their surrogates and clinicians |
| title_full | Perspectives on advance care planning needs of persons with advanced dementia from their surrogates and clinicians |
| title_fullStr | Perspectives on advance care planning needs of persons with advanced dementia from their surrogates and clinicians |
| title_full_unstemmed | Perspectives on advance care planning needs of persons with advanced dementia from their surrogates and clinicians |
| title_short | Perspectives on advance care planning needs of persons with advanced dementia from their surrogates and clinicians |
| title_sort | perspectives on advance care planning needs of persons with advanced dementia from their surrogates and clinicians |
| topic | Qualitative Long-term care Quality of life Surrogates Caregivers |
| url | http://www.sciencedirect.com/science/article/pii/S2772628223001218 |
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