1
views
0
recommends
+1 Recommend
0 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      Factors That Determine the Experience of Transition to an Inpatient Palliative Care Unit for Patients and Caregivers: A Qualitative Study

      research-article
      , MD, FRCP, CCFP 1 , 2 , , , MHSc MPL 3 , , MD, CCFP 1 , 2 , , BSW, MSW, RSW 2 , , MD, CCFP(PC), MScCH 1 , 2
      Journal of Palliative Care
      SAGE Publications
      palliative care, transitions, patient transfers, hospice, communication

      Read this article at

      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Objective: Transitions in care settings near the end of life can present challenges to patients and families, especially when there are also adjustments in level of care and illness trajectory. In this study, we explored what factors influenced how patients and family caregivers experienced a transition to an inpatient Palliative Care Unit (PCU). Methods: This qualitative study was conducted at a PCU in Toronto, Canada. Semi-structured interviews were held with 29 participants (14 patients and 15 family caregivers) during their time on the PCU. Data was analyzed through an iterative process of constant comparison to generate themes. The recruitment process continued to the point of thematic saturation. Results: Five themes were identified that represented the participants’ experiences in transitioning to the PCU: Being prepared, Feeling supported, Coming to terms with end of life issues, Dealing with uncertainty, and Continuity of care. Conclusions: Our findings highlight the need for clear and iterative communication with patients and family caregivers during the transition to a PCU. Identification and consideration of the common themes involved in the experience of transfer to PCU can help guide future practice and improve the experience of patients and families during transitions at the end of life.

          Related collections

          Most cited references25

          • Record: found
          • Abstract: found
          • Article: not found

          Quality end-of-life care: patients' perspectives.

          Quality end-of-life care is increasingly recognized as an ethical obligation of health care providers, both clinicians and organizations. However, this concept has not been examined from the perspective of patients. To identify and describe elements of quality end-of-life care from the patient's perspective. Qualitative study using in-depth, open-ended, face-to-face interviews and content analysis. Toronto, Ontario. A total of 126 participants from 3 patient groups: dialysis patients (n = 48), people with human immunodeficiency virus infection (n = 40), and residents of a long-term care facility (n = 38). Participants' views on end-of-life issues. Participants identified 5 domains of quality end-of-life care: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones. These domains, which characterize patients' perspectives on end-of-life care, can serve as focal points for improving the quality of end-of-life care.
            Bookmark
            • Record: found
            • Abstract: found
            • Article: not found

            End-of-life transitions among nursing home residents with cognitive issues.

            Health care transitions in the last months of life can be burdensome and potentially of limited clinical benefit for patients with advanced cognitive and functional impairment. To examine health care transitions among Medicare decedents with advanced cognitive and functional impairment who were nursing home residents 120 days before death, we linked nationwide data from the Medicare Minimum Data Set and claims files from 2000 through 2007. We defined patterns of transition as burdensome if they occurred in the last 3 days of life, if there was a lack of continuity in nursing homes after hospitalization in the last 90 days of life, or if there were multiple hospitalizations in the last 90 days of life. We also considered various factors explaining variation in these rates of burdensome transition. We examined whether there was an association between regional rates of burdensome transition and the likelihood of feeding-tube insertion, hospitalization in an intensive care unit (ICU) in the last month of life, the presence of a stage IV decubitus ulcer, and hospice enrollment in the last 3 days of life. Among 474,829 nursing home decedents, 19.0% had at least one burdensome transition (range, 2.1% in Alaska to 37.5% in Louisiana). In adjusted analyses, blacks, Hispanics, and those without an advance directive were at increased risk. Nursing home residents in regions in the highest quintile of burdensome transitions (as compared with those in the lowest quintile) were significantly more likely to have a feeding tube (adjusted risk ratio, 3.38), have spent time in an ICU in the last month of life (adjusted risk ratio, 2.10), have a stage IV decubitus ulcer (adjusted risk ratio, 2.28), or have had a late enrollment in hospice (adjusted risk ratio, 1.17). Burdensome transitions are common, vary according to state, and are associated with markers of poor quality in end-of-life care.
              Bookmark
              • Record: found
              • Abstract: found
              • Article: not found

              What matters most in end-of-life care: perceptions of seriously ill patients and their family members.

              Initiatives to improve end-of-life care are hampered by our nascent understanding of what quality care means to patients and their families. The primary purpose of this study was to describe what seriously ill patients in hospital and their family members consider to be the key elements of quality end-of-life care. After deriving a list of 28 elements related to quality end-of-life care from existing literature, focus groups with experts and interviews with patients, we administered a face-to-face questionnaire to older patients with advanced cancer and chronic end-stage medical disease and their family members in 5 hospitals across Canada to assess their perspectives on the importance. We compared differences in ratings across various subgroups of patients and family members. Of 569 eligible patients and 176 family members, 440 patients (77%) and 160 relations (91%) agreed to participate. The elements rated as "extremely important" most frequently by the patients were "To have trust and confidence in the doctors looking after you" (55.8% of respondents), "Not to be kept alive on life support when there is little hope for a meaningful recovery" (55.7%), "That information about your disease be communicated to you by your doctor in an honest manner" (44.1%) and "To complete things and prepare for life's end - life review, resolving conflicts, saying goodbye" (43.9%). Significant differences in ratings of importance between patient groups and between patients and their family members were found for many elements of care. Seriously ill patients and family members have defined the importance of various elements related to quality end-of-life care. The most important elements related to trust in the treating physician, avoidance of unwanted life support, effective communication, continuity of care and life completion. Variation in the perception of what matters the most indicates the need for customized or individualized approaches to providing end-of-life care.
                Bookmark

                Author and article information

                Journal
                J Palliat Care
                J Palliat Care
                PAL
                sppal
                Journal of Palliative Care
                SAGE Publications (Sage CA: Los Angeles, CA )
                0825-8597
                2369-5293
                15 July 2022
                October 2022
                : 37
                : 4
                : 579-585
                Affiliations
                [1 ] Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada
                [2 ] Salvation Army Toronto Grace Health Centre, Palliative Care Unit, Toronto, ON, Canada
                [3 ] Applied Research Centre, Li Ka Shing Knowledge Institute, Canada
                Author notes
                [*]Katherine Whitehead, University of Toronto, Toronto, ON, Canada. Email: kwhitehead@ 123456torontograce.org
                Author information
                https://orcid.org/0000-0001-7824-6439
                Article
                10.1177_08258597221105001
                10.1177/08258597221105001
                9465532
                35837725
                a90df80d-7355-464d-8362-37d97ed1d35e
                © The Author(s) 2022

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                Categories
                Transition to Palliative Care
                Custom metadata
                ts19

                palliative care,transitions,patient transfers,hospice,communication

                Comments

                Comment on this article