Qualitative evaluation of an integrated respiratory and palliative care service: patient, caregiver and general practitioner perspectives
Julie McDonald
A B * , Euan Fox A , Laura Booth B C and Jennifer Weil B C
+ Author Affiliations
- Author Affiliations
A Respiratory and Sleep Medicine Department, St Vincent’s Hospital Melbourne, 41 Victoria Parade, Fitzroy, Vic. 3065, Australia.
B Palliative Care Department, St Vincent’s Hospital Melbourne, 41 Victoria Parade, Fitzroy, Vic. 3065, Australia.
C Centre for Palliative Care, St Vincent’s Hospital Melbourne and University of Melbourne, Fitzroy, Vic. 3065, Australia.
* Correspondence to: julie.mcdonald@svha.org.au
Australian Health Review 47(4) 463-471 https://doi.org/10.1071/AH23076
Submitted: 5 December 2022 Accepted: 13 June 2023 Published: 6 July 2023
© 2023 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of AHHA.
Abstract
Objectives Integrated respiratory and palliative care services for people with advanced lung disease provide disease-orientated care until the end of life, alongside symptom management and discussions about future care. This study aimed to explore patient, caregiver and general practitioner perspectives of an integrated respiratory and palliative care service, to understand which components of the service were considered valued and effective.
Methods We approached patients, caregivers and general practitioners, to participate in semi-structured phone interviews. A grounded theory approach guided data collection and qualitative analysis.
Results Between July and December 2019, 10 patients, eight caregivers and five general practitioners completed interviews. The overarching theme was that of valuing integrated care – the provision of disease-orientated care along with palliative care. Four other major themes emerged: Valuing communication and engagement between patient, caregiver and healthcare professionals – who spoke of ‘growing this plan together’; the delivery of person-centred care – where physicians ‘actually listen and you are not treated like a number’; the reality of action plan use in serious illness – while many found plans ‘certainly’ do help, others described when they were simply ‘too ill to do the action plan’; and finally, divergent preferences for discussions about future care – while some patients felt this subject was ‘better left alone’, caregivers consistently reported their preference was to ‘make a plan.’
Conclusion Consumer perspectives highlight the service was valued for delivering personalised care with high communication standards. Similar services should appreciate the usefulness and limitations of action plan use in advanced lung disease, and be sensitive to potential diverging preferences of the patient and caregiver when discussing future care.
Keywords: advance care planning, breathlessness, caregivers, chronic obstructive pulmonary disease, delivery of healthcare, integrated, lung diseases, palliative care, patient-centred care, qualitative research.
References
[1] WHO. Chronic Respiratory Diseases. 2022. Available at https://www.who.int/health-topics/chronic-respiratory-diseases#[2] Lanken PN, Terry PB, DeLisser HM, Fahy BF, Hansen-Flaschen J, Heffner JE, et al. An official American Thoracic Society clinical policy statement: palliative care for patients with respiratory diseases and critical illnesses. Am J Respir Crit Care Med 2008; 177 912–27.
| An official American Thoracic Society clinical policy statement: palliative care for patients with respiratory diseases and critical illnesses.Crossref | GoogleScholarGoogle Scholar |
[3] Edmonds P, Karlsen S, Khan S, Addington-Hall J. A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer. Palliat Med 2001; 15 287–95.
| A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer.Crossref | GoogleScholarGoogle Scholar |
[4] Gore JM, Brophy CJ, Greenstone MA. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax 2000; 55 1000–6.
| How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer.Crossref | GoogleScholarGoogle Scholar |
[5] Habraken JM, ter Riet G, Gore JM, Greenstone MA, Weersink EJM, Bindels PJE, et al. Health-related quality of life in end-stage COPD and lung cancer patients. J Pain Symptom Manage 2009; 37 973–81.
| Health-related quality of life in end-stage COPD and lung cancer patients.Crossref | GoogleScholarGoogle Scholar |
[6] Sullivan DR, Iyer AS, Enguidanos S, Cox CE, Farquhar M, Janssen DJA, et al. Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement. Am J Respir Crit Care Med 2022; 206 e44–69.
| Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement.Crossref | GoogleScholarGoogle Scholar |
[7] Jacobsen J, Jackson V, Greer J, Temel J. What’s in the Syringe?: Principles of Early Integrated Palliative Care. Oxford University Press; 2021.
[8] Broese JM, de Heij AH, Janssen DJ, Skora JA, Kerstjens HA, Chavannes NH, et al. Effectiveness and implementation of palliative care interventions for patients with chronic obstructive pulmonary disease: A systematic review. Palliat Med 2021; 35 486–502.
| Effectiveness and implementation of palliative care interventions for patients with chronic obstructive pulmonary disease: A systematic review.Crossref | GoogleScholarGoogle Scholar |
[9] Yang I, George J, McDonald C, McDonald V, O’Brien M, Smith B, et al. The COPD-X Plan: Australian and New Zealand Guidelines for the management of Chronic Obstructive Pulmonary Disease 2021. Version 2.63. February. 2021. Available at https://copdx.org.au/copd-x-plan/
[10] Kreuter M, Bendstrup E, Russell AM, Bajwah S, Lindell K, Adir Y, et al. Palliative care in interstitial lung disease: living well. Lancet Respir Med 2017; 5 968–80.
| Palliative care in interstitial lung disease: living well.Crossref | GoogleScholarGoogle Scholar |
[11] Rosenwax L, Spilsbury K, McNamara BA, Semmens JB. A retrospective population based cohort study of access to specialist palliative care in the last year of life: who is still missing out a decade on? BMC Palliat Care 2016; 15 46
| A retrospective population based cohort study of access to specialist palliative care in the last year of life: who is still missing out a decade on?Crossref | GoogleScholarGoogle Scholar |
[12] Bloom CI, Slaich B, Morales DR, Smeeth L, Stone P, Quint JK. Low uptake of palliative care for COPD patients within primary care in the UK. Eur Respir J 2018; 51 1701879
| Low uptake of palliative care for COPD patients within primary care in the UK.Crossref | GoogleScholarGoogle Scholar |
[13] Rush B, Hertz P, Bond A, McDermid RC, Celi LA. Use of Palliative Care in Patients With End-Stage COPD and Receiving Home Oxygen: National Trends and Barriers to Care in the United States. Chest 2017; 151 41–6.
| Use of Palliative Care in Patients With End-Stage COPD and Receiving Home Oxygen: National Trends and Barriers to Care in the United States.Crossref | GoogleScholarGoogle Scholar |
[14] Tavares N, Jarrett N, Hunt K, Wilkinson T. Palliative and end-of-life care conversations in COPD: a systematic literature review. ERJ Open Res 2017; 3 00068-2016
| Palliative and end-of-life care conversations in COPD: a systematic literature review.Crossref | GoogleScholarGoogle Scholar |
[15] Carlucci A, Vitacca M, Malovini A, Pierucci P, Guerrieri A, Barbano L, et al. End-of-Life Discussion, Patient Understanding and Determinants of Preferences in Very Severe COPD Patients: A Multicentric Study. COPD 2016; 13 632–8.
| End-of-Life Discussion, Patient Understanding and Determinants of Preferences in Very Severe COPD Patients: A Multicentric Study.Crossref | GoogleScholarGoogle Scholar |
[16] Almagro P, Yun S, Sangil A, Rodríguez-Carballeira M, Marine M, Landete P, et al. Palliative care and prognosis in COPD: a systematic review with a validation cohort. Int J Chron Obstruct Pulmon Dis 2017; 12 1721–9.
| Palliative care and prognosis in COPD: a systematic review with a validation cohort.Crossref | GoogleScholarGoogle Scholar |
[17] Higginson IJ, Bausewein C, Reilly CC, Gao W, Gysels M, Dzingina M, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respir Med 2014; 2 979–87.
| An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial.Crossref | GoogleScholarGoogle Scholar |
[18] Maddocks M, Lovell N, Booth S, Man W-DC, Higginson IJ. Palliative care and management of troublesome symptoms for people with chronic obstructive pulmonary disease. Lancet 2017; 390 988–1002.
| Palliative care and management of troublesome symptoms for people with chronic obstructive pulmonary disease.Crossref | GoogleScholarGoogle Scholar |
[19] Oishi A, Murtagh FE. The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: a systematic review of views from patients, carers and health-care professionals. Palliat Med 2014; 28 1081–98.
| The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: a systematic review of views from patients, carers and health-care professionals.Crossref | GoogleScholarGoogle Scholar |
[20] Brighton LJ, Miller S, Farquhar M, Booth S, Yi D, Gao W, et al. Holistic services for people with advanced disease and chronic breathlessness: a systematic review and meta-analysis. Thorax 2019; 74 270–81.
| Holistic services for people with advanced disease and chronic breathlessness: a systematic review and meta-analysis.Crossref | GoogleScholarGoogle Scholar |
[21] McDonald J, Marco D, Howard R, Fox E, Weil J. Implementation of an integrated respiratory palliative care service for patients with advanced lung disease. Aust Health Rev 2022; 46 713–21.
| Implementation of an integrated respiratory palliative care service for patients with advanced lung disease.Crossref | GoogleScholarGoogle Scholar |
[22] Neergaard MA, Olesen F, Andersen RS, Sondergaard J. Qualitative description – the poor cousin of health research? BMC Med Res Methodol 2009; 9 52
| Qualitative description – the poor cousin of health research?Crossref | GoogleScholarGoogle Scholar |
[23] Corbin J, Strauss A. Basics of qualitative research: Techniques and procedures for developing grounded theory. Sage Publications; 2014.
[24] Lung Foundation Australia. COPD Action Plan. 2021. Available at https://lungfoundation.com.au/resources/copd-action-plan/
[25] Rocker GM, Cook D. ‘INSPIRED’ approaches to better care for patients with advanced COPD. Clin Invest Med 2013; 36 E114–20.
| ‘INSPIRED’ approaches to better care for patients with advanced COPD.Crossref | GoogleScholarGoogle Scholar |
[26] Mularski RA, Reinke LF, Carrieri-Kohlman V, Fischer MD, Campbell ML, Rocker G, et al. An official American Thoracic Society workshop report: assessment and palliative management of dyspnea crisis. Ann Am Thorac Soc 2013; 10 S98–106.
| An official American Thoracic Society workshop report: assessment and palliative management of dyspnea crisis.Crossref | GoogleScholarGoogle Scholar |
[27] Palliative Care Team CUHNF. Breathlessness Intervention Service Patient Information leaflets. 2023. Available at https://www.cuh.nhs.uk/our-services/breathlessness-intervention-service/patient-information-leaflets/
[28] Jacobsen J, Bernacki R, Paladino J. Shifting to Serious Illness Communication. JAMA 2022; 327 321–2.
| Shifting to Serious Illness Communication.Crossref | GoogleScholarGoogle Scholar |
[29] Booth S, Farquhar M, Gysels M, Bausewein C, Higginson IJ. The impact of a breathlessness intervention service (BIS) on the lives of patients with intractable dyspnea: A qualitative phase 1 study. Palliat Support Care 2006; 4 287–93.
| The impact of a breathlessness intervention service (BIS) on the lives of patients with intractable dyspnea: A qualitative phase 1 study.Crossref | GoogleScholarGoogle Scholar |
[30] Broese JMC, van der Kleij RMJJ, Verschuur EML, Kerstjens HAM, Engels Y, Chavannes NH. Implementation of a palliative care intervention for patients with COPD – a mixed methods process evaluation of the COMPASSION study. BMC Palliat Care 2022; 21 219
| Implementation of a palliative care intervention for patients with COPD – a mixed methods process evaluation of the COMPASSION study.Crossref | GoogleScholarGoogle Scholar |
[31] Bonella F, Wijsenbeek M, Molina-Molina M, Duck A, Mele R, Geissler K, et al. European IPF Patient Charter: unmet needs and a call to action for healthcare policymakers. Eur Respir J 2016; 47 597–606.
| European IPF Patient Charter: unmet needs and a call to action for healthcare policymakers.Crossref | GoogleScholarGoogle Scholar |
[32] Reilly CC, Bausewein C, Pannell C, Moxham J, Jolley CJ, Higginson IJ. Patients’ experiences of a new integrated breathlessness support service for patients with refractory breathlessness: Results of a postal survey. Palliat Med 2016; 30 313–22.
| Patients’ experiences of a new integrated breathlessness support service for patients with refractory breathlessness: Results of a postal survey.Crossref | GoogleScholarGoogle Scholar |
[33] Qian MYY, Politis J, Thompson M, Wong D, Le B, Irving L, et al. Individualized breathlessness interventions may improve outcomes in patients with advanced COPD. Respirology 2018; 23 1146–51.
| Individualized breathlessness interventions may improve outcomes in patients with advanced COPD.Crossref | GoogleScholarGoogle Scholar |
[34] Rabow MW, Schanche K, Petersen J, Dibble SL, McPhee SJ. Patient perceptions of an outpatient palliative care intervention: “It had been on my mind before, but I did not know how to start talking about death…”. J Pain Symptom Manage 2003; 26 1010–5.
| Patient perceptions of an outpatient palliative care intervention: “It had been on my mind before, but I did not know how to start talking about death…”.Crossref | GoogleScholarGoogle Scholar |
[35] Quinn KL, Shurrab M, Gitau K, Kavalieratos D, Isenberg SR, Stall NM, et al. Association of Receipt of Palliative Care Interventions With Health Care Use, Quality of Life, and Symptom Burden Among Adults With Chronic Noncancer Illness: A Systematic Review and Meta-analysis. JAMA 2020; 324 1439–50.
| Association of Receipt of Palliative Care Interventions With Health Care Use, Quality of Life, and Symptom Burden Among Adults With Chronic Noncancer Illness: A Systematic Review and Meta-analysis.Crossref | GoogleScholarGoogle Scholar |
[36] Horton R. Reducing emergency room utilization in end-stage COPD – feasible or fantasy? Chron Respir Dis 2013; 10 49–54.
| Reducing emergency room utilization in end-stage COPD – feasible or fantasy?Crossref | GoogleScholarGoogle Scholar |
[37] Farquhar MC, Prevost AT, McCrone P, Brafman-Price B, Bentley A, Higginson IJ, et al. The clinical and cost effectiveness of a Breathlessness Intervention Service for patients with advanced non-malignant disease and their informal carers: mixed findings of a mixed method randomised controlled trial. Trials 2016; 17 185
| The clinical and cost effectiveness of a Breathlessness Intervention Service for patients with advanced non-malignant disease and their informal carers: mixed findings of a mixed method randomised controlled trial.Crossref | GoogleScholarGoogle Scholar |
[38] Bryant J, Mansfield E, Boyes AW, Waller A, Sanson-Fisher R, Regan T. Involvement of informal caregivers in supporting patients with COPD: a review of intervention studies. Int J Chron Obstruct Pulmon Dis 2016; 11 1587–96.
| Involvement of informal caregivers in supporting patients with COPD: a review of intervention studies.Crossref | GoogleScholarGoogle Scholar |
[39] Bajwah S, Koffman J, Higginson IJ, Ross JR, Wells AU, Birring SS, et al. ‘I wish I knew more…’ the end-of-life planning and information needs for end-stage fibrotic interstitial lung disease: views of patients, carers and health professionals. BMJ Support Palliat Care 2013; 3 84–90.
| ‘I wish I knew more…’ the end-of-life planning and information needs for end-stage fibrotic interstitial lung disease: views of patients, carers and health professionals.Crossref | GoogleScholarGoogle Scholar |
[40] Hines SC, Glover JJ, Babrow AS, Holley JL, Badzek LA, Moss AH. Improving advance care planning by accommodating family preferences. J Palliat Med 2001; 4 481–9.
| Improving advance care planning by accommodating family preferences.Crossref | GoogleScholarGoogle Scholar |
[41] Silies KT, Köpke S, Schnakenberg R. Informal caregivers and advance care planning: systematic review with qualitative meta-synthesis. BMJ Support Palliat Care 2022; 12 e472–83.
| Informal caregivers and advance care planning: systematic review with qualitative meta-synthesis.Crossref | GoogleScholarGoogle Scholar |
[42] Kavalieratos D, Corbelli J, Zhang D, Dionne-Odom JN, Ernecoff NC, Hanmer J, et al. Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis. JAMA 2016; 316 2104–14.
| Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis.Crossref | GoogleScholarGoogle Scholar |
[43] Alam S, Hannon B, Zimmermann C. Palliative Care for Family Caregivers. J Clin Oncol 2020; 38 926–36.
| Palliative Care for Family Caregivers.Crossref | GoogleScholarGoogle Scholar |
[44] Abernethy AP, Shelby-James T, Fazekas BS, Woods D, Currow DC. The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice [ISRCTN81117481]. BMC Palliat Care 2005; 4 7
| The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice [ISRCTN81117481].Crossref | GoogleScholarGoogle Scholar |
[45] Barbetta C, Allgar V, Maddocks M, Ribeiro C, Wilcock A, Currow DC, et al. Australia-modified Karnofsky Performance Scale and physical activity in COPD and lung cancer: an exploratory pooled data analysis. BMJ Support Palliat Care 2019; 12 e759–62.
| Australia-modified Karnofsky Performance Scale and physical activity in COPD and lung cancer: an exploratory pooled data analysis.Crossref | GoogleScholarGoogle Scholar |
[46] Casanova C, Marin JM, Martinez-Gonzalez C, de Lucas-Ramos P, Mir-Viladrich I, Cosio B, et al. Differential Effect of Modified Medical Research Council Dyspnea, COPD Assessment Test, and Clinical COPD Questionnaire for Symptoms Evaluation Within the New GOLD Staging and Mortality in COPD. Chest 2015; 148 159–68.
| Differential Effect of Modified Medical Research Council Dyspnea, COPD Assessment Test, and Clinical COPD Questionnaire for Symptoms Evaluation Within the New GOLD Staging and Mortality in COPD.Crossref | GoogleScholarGoogle Scholar |
[47] Henoch I, Strang S, Löfdahl CG, Ekberg-Jansson A. Health-related quality of life in a nationwide cohort of patients with COPD related to other characteristics. Eur Clin Respir J 2016; 3 31459
| Health-related quality of life in a nationwide cohort of patients with COPD related to other characteristics.Crossref | GoogleScholarGoogle Scholar |
