Defining ‘specialist palliative care’: findings from a Delphi study of clinicians
Liz Forbat
A B F , Nikki Johnston C and Imogen Mitchell D E
A Faculty of Social Sciences, University of Stirling, Stirling, FK9 4LA, UK.
B Faculty of Health Sciences, Australian Catholic University, Canberra, ACT 2600, Australia.
C Calvary Public Hospital, Canberra, ACT 2600, Australia. Email: Nikki.Johnston@calvary-act.com.au
D Medical School, Australian National University, Florey Building, 54 Mills Road, Canberra, ACT 2601, Australia. Email: imogen.mitchell@anu.edu.au
E Canberra Hospital, Building 4, Level 2, Garran, ACT 2605, Australia.
F Corresponding author. Email: Elizabeth.Forbat1@stir.ac.uk
Australian Health Review 44(2) 313-321 https://doi.org/10.1071/AH18198
Submitted: 26 September 2018 Accepted: 20 February 2019 Published: 28 June 2019
Abstract
Objective This study aimed to achieve consensus regarding what distinguishes specialist from non-specialist palliative care to inform service organisation and delivery to patients with life-limiting conditions.
Methods A three-phase Delphi study was undertaken, involving qualitative interviews and two questionnaire cycles. Thirty-one clinicians (nurses, doctors and social workers) working with a wide range of patients participated in interviews, of whom 27 completed two questionnaire cycles.
Results Consensus was gained on 75 items that define specialist palliative care and distinguish it from non-specialist palliative care. Consensus was gained that specialist palliative care clinicians have advanced knowledge of identifying dying, skills to assess and manage complex symptoms to improve quality of life, have advanced communication skills and perform distinct clinical practices (e.g. working with the whole family as the unit of care and providing support in complex bereavement). Non-specialist palliative care involves discussions around futile or burdensome treatments, and care for people who are dying.
Conclusions Areas of connection were identified: clinicians from disease-specific specialties should be more involved in leading discussions on futile or burdensome treatment and providing care to people in their last months and days of life, in collaboration with specialists in palliative care when required.
What is known about the topic? At present there is no evidence-based definition or agreement about what constitutes specialist palliative care (as opposed to palliative care delivered by non-specialists) in the Australian Capital Territory. An agreed definition is needed to effectively determine the workforce required and its clinical skill mix, and to clarify roles and expectations to mitigate risks in not adequately providing services to patients with life-limiting conditions.
What does this paper add? This paper offers, for the first time, an evidence-based definition that distinguishes specialist palliative care from non-specialist palliative care. End of life care and bereavement support are not just the remit of specialist palliative care clinicians. Clinicians from beyond specialist palliative care should lead discussions about futile or burdensome treatment.
What are the implications for practitioners? The findings of this study can facilitate implementation of palliative care strategies by enabling practitioners and patients to distinguish who should be delivering what care.
References
[1] Philip J, Collins A. Editorial: routine integration of palliative care: what will it take? Med J Aust 2015; 203 385| Editorial: routine integration of palliative care: what will it take?Crossref | GoogleScholarGoogle Scholar | 26561894PubMed |
[2] Lynn J, Adamson DM. Living well at the end of life. Adapting health care to serious chronic illness in old age. Santa Monica: RAND Health; 2003.
[3] Clegg A, Young J, Iliffe S, Rikkert MO, Rockwood K. Frailty in elderly people. Lancet 2013; 381 752–62.
| Frailty in elderly people.Crossref | GoogleScholarGoogle Scholar | 23395245PubMed |
[4] Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. BMJ 2003; 326 30–4.
| Care of the dying patient: the last hours or days of life.Crossref | GoogleScholarGoogle Scholar | 12511460PubMed |
[5] Ziegler LE, Craigs CL, West RM, Carder P, Hurlow A, Millares-Martin P, Hall G, Bennett MI. Is palliative care support associated with better quality end-of-life care indicators for patients with advanced cancer? A retrospective cohort study. BMJ Open 2018; 8 e018284
| Is palliative care support associated with better quality end-of-life care indicators for patients with advanced cancer? A retrospective cohort study.Crossref | GoogleScholarGoogle Scholar | 29572400PubMed |
[6] Commonwealth of Australia. Supporting Australians to live well at the end of life. National palliative care strategy. Canberra: Department of Health; 2010.
[7] von Gunten CF. Secondary and tertiary palliative care in US hospitals. JAMA 2002; 287 875–81.
| Secondary and tertiary palliative care in US hospitals.Crossref | GoogleScholarGoogle Scholar | 11851580PubMed |
[8] Quill TE, Abernathy AP. Generalist plus specialist palliative care – creating a more sustainable model. N Engl J Med 2013; 368 1173–5.
| Generalist plus specialist palliative care – creating a more sustainable model.Crossref | GoogleScholarGoogle Scholar | 23465068PubMed |
[9] Clark D. From margins to centre: a review of the history of palliative care in cancer. Lancet Oncol 2007; 8 430–8.
| From margins to centre: a review of the history of palliative care in cancer.Crossref | GoogleScholarGoogle Scholar | 17466900PubMed |
[10] Murray SA, Sheikh A. Care for all at the end of life. BMJ 2008; 336 958–9.
| Care for all at the end of life.Crossref | GoogleScholarGoogle Scholar | 18397942PubMed |
[11] Zhen L, Finucane AM, Oxenholm D, McLoughlin P, McCutcheon H, Murray SA. How good is primary care at identifying patients who need palliative care? A mixed methods study. Eur J Palliat Care 2003; 20 216–22.
[12] Powell C. The Delphi technique: myths and realities. J Adv Nurs 2003; 41 376–82.
| The Delphi technique: myths and realities.Crossref | GoogleScholarGoogle Scholar | 12581103PubMed |
[13] Jünger S, Payne SA, Brine J, Radbruch L, Brearley SG. Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: recommendations based on a methodological systematic review. Palliat Med 2017; 31 664–706.
[14] Mead D, Moseley L. The use of the Delphi as a research approach. Nurse Res 2001; 8 4–23.
| The use of the Delphi as a research approach.Crossref | GoogleScholarGoogle Scholar |
[15] Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3 77–101.
| Using thematic analysis in psychology.Crossref | GoogleScholarGoogle Scholar |
[16] Butterworth T, Bishop V. Identifying the characteristics of optimum practice: findings from a survey of practice experts in nursing, midwifery and health visiting. J Adv Nurs 1995; 22 24–32.
| Identifying the characteristics of optimum practice: findings from a survey of practice experts in nursing, midwifery and health visiting.Crossref | GoogleScholarGoogle Scholar | 7560532PubMed |
[17] Keeney S, Hasson F, McKenna HP. A critical review of the Delphi technique as a research methodology for nursing. Int J Nurs Stud 2001; 38 195–200.
| A critical review of the Delphi technique as a research methodology for nursing.Crossref | GoogleScholarGoogle Scholar | 11223060PubMed |
[18] Green B, Jones M, Hughes D, Williams A. Applying the Delphi technique in a study of GPs’ information requirements. Health Soc Care Community 1999; 7 198–205.
| Applying the Delphi technique in a study of GPs’ information requirements.Crossref | GoogleScholarGoogle Scholar | 11560634PubMed |
[19] Potter J, Hami F, Bryan T, Quigley C. Symptoms in 400 patients referred to palliative care services: prevalence and patterns. Palliat Med 2003; 17 310–4.
| Symptoms in 400 patients referred to palliative care services: prevalence and patterns.Crossref | GoogleScholarGoogle Scholar | 12822846PubMed |
[20] Kluger BM, Persenaire MJ, Holden SK, Palmer LT, Redwine H, Berk J, Anderson CA, Filley CM, Kutner J, Miyasaki J, Carter J. Implementation issues relevant to outpatient neurology palliative care. Ann Palliat Med 2018; 7 339–48.
| 29307208PubMed |
[21] Finn L, Green AR, Malhotra S. Oncology and palliative medicine: providing comprehensive care for patients with cancer. Ochsner J 2017; 17 393–7.
| 29230124PubMed |
[22] Gibbins J, McCoubrie R, Alexander N, Kinzel C, Forbes K. Diagnosing dying in the acute hospital setting – are we too late? Clin Med (Lond) 2009; 9 116–19.
| Diagnosing dying in the acute hospital setting – are we too late?Crossref | GoogleScholarGoogle Scholar | 19435113PubMed |
[23] Johnston N, Lovell C, Liu WM, Chapman M, Forbat L. Normalising and planning for death in residential care: findings from a qualitative focus group study of a specialist palliative care intervention. BMJ Support Palliat Care 2019; 9 e12
| 27489222PubMed |
[24] Blaževičienė A, Newland JA, Čivinskienė V, Beckstrand RL. Oncology nurses’ perceptions of obstacles and role at the end-of-life care: cross sectional survey. BMC Palliat Care 2017; 16 74
| Oncology nurses’ perceptions of obstacles and role at the end-of-life care: cross sectional survey.Crossref | GoogleScholarGoogle Scholar | 29258492PubMed |
[25] Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, Mitchell SL, Jackson VA, Block SD, Maciejewski PK, Prigerson HG. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008; 300 1665–73.
| Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment.Crossref | GoogleScholarGoogle Scholar | 18840840PubMed |
[26] Tieman J, Miller-Lewis L, Rawlings D, Parker D, Sanderson C. The contribution of a MOOC to community discussions around death and dying. BMC Palliat Care 2018; 17 31
| The contribution of a MOOC to community discussions around death and dying.Crossref | GoogleScholarGoogle Scholar | 29458347PubMed |
[27] Grindrod A, Rumbold B. Healthy End of Life Project (HELP): a progress report on implementing community guidance on public health palliative care initiatives in Australia. Ann Palliat Med 2018; 7 S73–83.
| Healthy End of Life Project (HELP): a progress report on implementing community guidance on public health palliative care initiatives in Australia.Crossref | GoogleScholarGoogle Scholar | 29764174PubMed |
[28] Hudson P, Remedios C, Zordan R, Thomas K, Clifton D, Crewdson M, Hall C, Trauer T, Bolleter A, Clarke DM, Bauld C. Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. J Palliat Med 2012; 15 696–702.
| Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients.Crossref | GoogleScholarGoogle Scholar | 22385026PubMed |
[29] Aoun SM, Breen LJ, O’Connor M, Rumbold B, Nordstrom C. A public health approach to bereavement support services in palliative care. Aust N Z J Public Health 2012; 36 14–16.
| A public health approach to bereavement support services in palliative care.Crossref | GoogleScholarGoogle Scholar | 22313700PubMed |
[30] Kellehear A. Health-promoting palliative care: developing a social model for practice. Mortality 1999; 4 75–82.
| Health-promoting palliative care: developing a social model for practice.Crossref | GoogleScholarGoogle Scholar |
[31] Gaertner J, Siemens W, Meerpohl JJ, Antes G, Meffert C, Xander C, Stock S, Mueller M, Schwarzer G, Becker G. Effect of specialist palliative care services on quality of life in adults with advanced incurable illness in hospital, hospice, or community settings: systematic review and meta-analysis. BMJ 2017; 357 j2925
| Effect of specialist palliative care services on quality of life in adults with advanced incurable illness in hospital, hospice, or community settings: systematic review and meta-analysis.Crossref | GoogleScholarGoogle Scholar | 28676557PubMed |
[32] Rajala K, Lehto JT, Saarinen M, Sutinen E, Saarto T, Myllarniemi M. End-of-life care of patients with idiopathic pulmonary fibrosis. BMC Palliat Care 2016; 15 85
| End-of-life care of patients with idiopathic pulmonary fibrosis.Crossref | GoogleScholarGoogle Scholar | 27729035PubMed |
[33] Siouta N, Van Beek K, van der Eerden ME, Preston N, Hasselaar JG, Hughes S, Garralda E, Centreno C, Csikos A, Groot M, Radbruch S, Payne S, Menten J. Integrated palliative care in Europe: a qualitative systematic literature review of empirically-tested models in cancer and chronic disease. BMC Palliat Care 2016; 15 56
| Integrated palliative care in Europe: a qualitative systematic literature review of empirically-tested models in cancer and chronic disease.Crossref | GoogleScholarGoogle Scholar | 27391378PubMed |
[34] Ewertowski H, Tetzlaff F, Stiel S, Schneider N, Junger S. Primary palliative care in general practice – study protocol of a three-stage mixed-methods organizational health services research study. BMC Palliat Care 2018; 17 21
| Primary palliative care in general practice – study protocol of a three-stage mixed-methods organizational health services research study.Crossref | GoogleScholarGoogle Scholar | 29378561PubMed |
[35] Morrison RS, Dietrich J, Ladwig S, Quill TE, Sacco J, Tangeman J, Meier DE. Palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Aff (Millwood) 2011; 30 454–63.
| Palliative care consultation teams cut hospital costs for Medicaid beneficiaries.Crossref | GoogleScholarGoogle Scholar | 21383364PubMed |
[36] Hannon B, Swami N, Rodin G, Pope A, Zimmermann C. Experiences of patients and caregivers with early palliative care: a qualitative study. Palliat Med 2017; 31 72–81.
| Experiences of patients and caregivers with early palliative care: a qualitative study.Crossref | GoogleScholarGoogle Scholar | 27495814PubMed |
[37] Hui D, Mori M, Meng YC, Watanabe SM, Caraceni A, Strasser F, Saarto T, Cherny N, Glare P, Kaasa S, Bruera E. Automatic referral to standardize palliative care access: an international Delphi survey. Support Care Cancer 2018; 26 175–80.
| Automatic referral to standardize palliative care access: an international Delphi survey.Crossref | GoogleScholarGoogle Scholar | 28726065PubMed |
[38] Visser M, Deliens L, Houttekier D. Physician-related barriers to communication and patient- and family-centred decision-making towards the end of life in intensive care: a systematic review. Crit Care 2014; 18 604
| Physician-related barriers to communication and patient- and family-centred decision-making towards the end of life in intensive care: a systematic review.Crossref | GoogleScholarGoogle Scholar | 25403291PubMed |
[39] Australian Commission on Safety and Quality in Health Care (ACSQHC). National consensus statement essential elements for safe and high-quality end of life care. Sydney: ACSQHC; 2015.
[40] Australian Commission on Safety and Quality in Health Care (ACSQHC). National safety and quality health service standards. Sydney: ACSQHC; 2012.
[41] Palliative Care Australia. National palliative care standards. Canberra: Palliative Care Australia; 2018.
[42] Morrison RS. A national palliative care strategy for Canada. J Palliat Med 2017; 20 S63–75.
[43] Department of Health. End of life care strategy promoting high quality care for all adults at the end of life. London: Department of Health; 2008.
