Hostname: page-component-76fb5796d-r6qrq Total loading time: 0 Render date: 2024-04-25T06:59:30.272Z Has data issue: false hasContentIssue false
  • English
  • Français

What should be measured to assess the quality of community-based palliative care? Results from a collaborative expert workshop

Published online by Cambridge University Press:  22 June 2021

Nicole Williams Open the ORCID record for Nicole Williams [Opens in a new window] ,
Nicole Boumans Open the ORCID record for Nicole Boumans [Opens in a new window] ,
Nicole Luymes ,
Nancy E. White ,
Manon Lemonde  and
Dawn M. Guthrie
Nicole Williams*
Affiliation:
Department of Kinesiology and Physical Education, Wilfrid Laurier University, Waterloo, Ontario, Canada
Nicole Boumans
Affiliation:
Faculty of Health Sciences, Ontario Tech University, Oshawa, Ontario, Canada
Nicole Luymes
Affiliation:
Department of Kinesiology and Physical Education, Wilfrid Laurier University, Waterloo, Ontario, Canada
Nancy E. White
Affiliation:
Department of Kinesiology and Physical Education, Wilfrid Laurier University, Waterloo, Ontario, Canada
Manon Lemonde
Affiliation:
Faculty of Health Sciences, Ontario Tech University, Oshawa, Ontario, Canada
Dawn M. Guthrie
Affiliation:
Department of Kinesiology and Physical Education, Wilfrid Laurier University, Waterloo, Ontario, Canada Department of Health Sciences, Wilfrid Laurier University, Waterloo, Ontario, Canada
*
Author for correspondence: Nicole Williams, Department of Kinesiology and Physical Education, Wilfrid Laurier University, (NW) 75 University Ave W, Waterloo, Ontario, Canada N2L 3C5. E-mail: nwilliams@wlu.ca
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives

The need for palliative care (PC) will continue to increase in Canada with population aging. Many older adults prefer to “age in place” and receive care in their own homes. Currently, there is a lack of standardized quality indicators (QIs) for PC delivered in the community in Canada.

Methods

A one-day workshop collected expert opinions on what should be measured to capture quality PC. Three brainstorming sessions were focused on addressing the following questions: (1) what is important to measure to support quality PC, regardless of setting? (2) Of the identified measures, are any of special importance to care provided in the home? (3) What are the challenges, barriers, and opportunities for creating these measures? The National Consensus Project (NCP) for Quality Palliative Care framework was used as a guide to group together important comments into key themes.

Results

The experts identified four themes that are important for measuring quality, regardless of care setting, including access to care in the community by a multidisciplinary team, care for the individual with PC needs, support for the informal caregiver (e.g., family, friends), and symptom management for individuals with PC needs. Two additional themes were of special importance to measuring quality PC in the home, including spiritual care for individuals with PC needs and home as the preferred place of death. The challenges, barriers, and potential opportunities to these quality issues were also discussed.

Significance of results

PC experts, through this collaborative process, made a substantial contribution to the creation of a standardized set of QIs for community-based PC. Having a standardized set of QIs will enable health care professionals and decision makers to target areas for improvement, implement interventions to improve the quality of care, and ultimately, optimize the health and well-being of individuals with a serious illness.

Keywords

Expert opinionHome and community carePalliative careWorkshop
Type
Original Article
Information
Palliative & Supportive Care , Volume 20 , Issue 2 , April 2022 , pp. 226 - 232
Check for updates
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Ahluwalia, SC, Chen, C, Raaen, L, et al. (2018) A systematic review in support of the national consensus project clinical practice guidelines for quality palliative care, fourth edition. Journal of Pain and Symptom Management 56(6), 831–870.CrossRefGoogle ScholarPubMed
Australian Government (2018) National Palliative Care Strategy 2018. Canberra, Australia: Department of Health.Google Scholar
Bainbridge, D and Seow, H (2016) Measuring the quality of palliative care at end of life: An overview of data sources. Healthy Aging & Clinical Care in the Elderly 8, 9–15.Google Scholar
Bakitas, M, Lyons, KD, Hegel, MT, et al. (2009) Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The project ENABLE II randomized controlled trial. Journal of the American Medical Association 302(7), 741–749.CrossRefGoogle Scholar
Barbera, L, Paszat, L and Chartier, C (2006) Indicators of poor quality end-of-life cancer care in Ontario. Journal of Palliative Care 22(1), 12–17.CrossRefGoogle ScholarPubMed
Barbera, L, Seow, H, Sutradhar, R, et al. (2015) Quality of end-of-life cancer care in Canada: A retrospective four-province study using administrative health care data. Current Oncology 22(5), 341–355.CrossRefGoogle Scholar
Black, BS, Johnston, D, Morrison, A, et al. (2012) Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures. Quality of Life Research 21(8), 1379–1389.CrossRefGoogle ScholarPubMed
Canadian Hospice Palliative Care Association (2013a). Fact Sheet: Hospice Palliative Care in Canada.Google Scholar
Canadian Hospice Palliative Care Association (2013b). Palliative care in the community: An environmental scan of frameworks and indicators.Google Scholar
Canadian Institute for Health Information (2018) Access to Palliative Care in Canada. Ottawa, ON: CIHI.Google Scholar
Cohen, J, Pivodic, L, Miccinesi, G, et al. (2015) International study of the place of death of people with cancer: A population-level comparison of 14 countries across 4 continents using death certificate data. British Journal of Cancer 113(9), 1397–1404.CrossRefGoogle Scholar
Creswell, R (2018) Qualitative Inquiry & Research Design: Choosing among Five Approaches. Thousand Oaks, CA: Sage.Google Scholar
Curtis, JR, Back, AL, Ford, DW, et al. (2013) Effect of communication skills training for residents and nurse practitioners on quality of communication with patients with serious illness. JAMA 310(21), 2271.CrossRefGoogle ScholarPubMed
D'Angelo, D, Mastroianni, C, Vellone, E, et al. (2012) Palliative care quality indicators in Italy. What do we evaluate? Supportive Care in Cancer 20, 1983–1989.CrossRefGoogle ScholarPubMed
De Roo, ML, Leemans, K, Claessen, SJJ, et al. (2013) Quality indicators for palliative care: Update of a systematic review. Journal of Pain and Symptom Management 46(4), 1–17.CrossRefGoogle ScholarPubMed
Dy, SM, Kiley, K, Ast, K, et al. (2015) Measuring what matters: Top-ranked quality indicators for hospice and palliative care from the American academy of hospice and palliative medicine and palliative nurses association. Journal of Pain and Symptom Management 49(4), 773–781.CrossRefGoogle Scholar
Etkind, SN, Bone, AE, Gomes, B, et al. (2017) How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Medicine 15(1), 102.CrossRefGoogle ScholarPubMed
Ferrell, BR, Twaddle, ML, Melnick, A, et al. (2018) National consensus project clinical practice guidelines for quality palliative care guidelines, 4th edition. Journal of Palliative Medicine 21(12), 1684–1689.CrossRefGoogle ScholarPubMed
Gagnon, B, Nadeau, L, Scott, S, et al. (2015) The association between home palliative care services and quality of end-of-life care indicators in the province of Quebec. Journal of Pain and Symptom Management 50(1), 48–58.CrossRefGoogle ScholarPubMed
Garlo, K, O'Leary, JR, Van Ness, PH, et al. (2010) Burden in caregivers of older adults with advanced illness. Journal of the American Geriatrics Society 58(12), 2315–2322.CrossRefGoogle ScholarPubMed
Government of Canada (2018) Framework on Palliative Care in Canada. Ottawa, Ontario: Health Canada.Google Scholar
Grunfeld, E, Lethbridge, L, Dewar, R, et al. (2006) Towards using administrative databases to measure population-based indicators of quality of end-of-life care: Testing the methodology. Palliative Medicine 20, 769–777.CrossRefGoogle ScholarPubMed
Guerriere, D, Husain, A, Zagorski, B, et al. (2016) Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada. Health and Social Care in the Community 24(4), 428–438.CrossRefGoogle ScholarPubMed
Hirdes, JP, Fries, BE, Morris, JN, et al. (2004) Home care quality indicators (HCQIs) based on the MDS-HC. The Gerontologist 44(5), 665–679.CrossRefGoogle ScholarPubMed
Hirdes, JP, Freeman, S, Smith, TF, et al. (2012) Predictors of caregiver distress among palliative home care clients in Ontario: Evidence based on the interRAI palliative care. Palliative and Supportive Care 10(3), 155–163.CrossRefGoogle ScholarPubMed
Leemans, K, Van den Block, L, Vander Stichele, R, et al. (2015) How to implement quality indicators successfully in palliative care services: Perceptions of team members about facilitators of and barriers to implementation. Supportive Care in Cancer 23(12), 3503–3511.CrossRefGoogle ScholarPubMed
Maetens, A, Deliens, L, Van den Block, L, et al. (2019) Are We evolving toward greater and earlier use of palliative home care support? A trend analysis using population-level data from 2010 to 2015. Journal of Pain and Symptom Management 58(1), 19–28.CrossRefGoogle ScholarPubMed
Miller, EA, Rosenheck, RA and Schneider, LS (2012) Caregiver burden, health utilities, and institutional service use in Alzheimer's disease. International Journal of Geriatric Psychiatry 27(4), 382–393.CrossRefGoogle ScholarPubMed
Ministry of Health (2001) The New Zealand Palliative Care Strategy. Wellington, New Zealand: Ministry of Health.Google Scholar
Mistry, B, Bainbridge, D, Bryant, D, et al. (2015) What matters most for end-of-life care? Perspectives from community-based palliative care providers and administrators. BMJ Open 5(6), 1–8.CrossRefGoogle ScholarPubMed
Paetkau, S, Switzer, G, Kasperki, J, et al. (2011) Advancing High Quality, High Value Palliative Care in Ontario: Declaration of Partnership and Commitment to Action. Toronto, ON: Hospice Palliative Care Ontario.Google Scholar
Pasman, HRW, Brandt, HE, Deliens, L, et al. (2009) Quality indicators for palliative care: A systematic review. Journal of Pain and Symptom Management 38(1), 145–156.CrossRefGoogle ScholarPubMed
Payne, S, Hughes, S, Wilkinson, J, et al. (2019) Recommendations on priorities for integrated palliative care: Transparent expert consultation with international leaders for the InSuP-C project. BMC Palliative Care 18(132), 1–8.CrossRefGoogle ScholarPubMed
Qureshi, D, Tanuseputro, P, Perez, R, et al. (2019) Early initiation of palliative care is associated with reduced late-life acute-hospital use: A population-based retrospective cohort study. Palliative Medicine 33(2), 150–159.CrossRefGoogle ScholarPubMed
Seow, H, O'Leary, E, Perez, R, et al. (2018) Access to palliative care by disease trajectory: A population-based cohort of Ontario decedents. BMJ Open 8(e021147), 1–9.CrossRefGoogle ScholarPubMed
Shaw, KL, Clifford, C, Thomas, K, et al. (2010) Improving end-of-life care: A critical review of the gold standards framework in primary care. Palliative Medicine 24(3), 317–329.CrossRefGoogle ScholarPubMed
Skorstengaard, MH, Neergaard, MA, Andreassen, P, et al. (2017) Preferred place of care and death in terminally ill patients with lung and heart disease compared to cancer patients. Journal of Palliative Medicine 20(11), 1–8.CrossRefGoogle ScholarPubMed
Smith, TF, Steel, K, Fries, BE, et al. (2010) InterRAI Palliative Care (PC) Assessment Form and User's Manual, 9.1., 1-145. Rockport, Massachusetts, USA: Open Book Systems (OBS) Inc.Google Scholar
Stevinson, C, Preston, N and Todd, C (2010) Defining priorities in prognostication research: Results of a consensus workshop. Palliative Medicine 24(5), 462–468.CrossRefGoogle ScholarPubMed
Tanuseputro, P, Beach, S, Chalifoux, M, et al. (2018) Associations between physician home visits for the dying and place of death: A population-based retrospective cohort study. PLoS One 13(2), e0191322.CrossRefGoogle Scholar
Temel, JS, Greer, JA, Muzikansky, A, et al. (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. New England Journal of Medicine 363(8), 733–742.CrossRefGoogle ScholarPubMed
Vellone, E, Fida, R, Cocchieri, A, et al. (2011) Positive and negative impact of caregiving to older adults: A structural equation model. Professioni Infermieristiche 64(4), 237–248.Google ScholarPubMed
Wachterman, MV, Pilver, C, Smith, D, et al. (2016) Quality of end-of-life care provided to patients with different serious illnesses. JAMA Internal Medicine 176(8), 1095–1102.CrossRefGoogle ScholarPubMed
Wang, CW, Chow, AY and Chan, CL (2017) The effects of life review interventions on spiritual well-being, psychological distress, and quality of life in patients with terminal or advanced cancer: A systematic review and meta-analysis of randomized controlled trials. Palliative Medicine 31(10), 883–894.CrossRefGoogle ScholarPubMed
Wilson, DM and Birch, S (2018) Moving from place to place in the last year of life: A qualitative study identifying care setting transition issues and solutions in Ontario. Health and Social Care in the Community 26(2), 232–239.CrossRefGoogle ScholarPubMed
Wilson, DM, Truman, CD, Thomas, R, et al. (2009) The rapidly changing location of death in Canada, 1994-2004. Social Science and Medicine 68(10), 1752–1758.CrossRefGoogle ScholarPubMed
Wilson, DM, Shen, Y and Birch, S (2017) New evidence on end-of-life hospital utilization for enhanced health policy and services planning. Journal of Palliative Medicine 20(7), 752–758.CrossRefGoogle ScholarPubMed
Woitha, K, Van Beek, K, Ahmed, N, et al. (2012) Development of a set of process and structure indicators for palliative care: The Europall project. BMC Health Services Research 12(1), 381.CrossRefGoogle ScholarPubMed
World Health Organization (2016) WHO definition of palliative care. Vol. 2016.Google Scholar