Vol 16, No 1 (2022)
Research paper
Published online: 2021-12-30

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Organizational standards for specialist palliative care for adult patients: Recommendations of the Expert Group of National Consultants in Palliative Medicine and Palliative Care Nursing

Wojciech Leppert1, Tomasz Grądalski2, Aleksandra Kotlińska-Lemieszek3, Izabela Kaptacz4, Anna Białoń-Janusz2, Leszek Pawłowski5
Palliat Med Pract 2022;16(1):7-26.

Abstract

Introduction: The study aimed to develop organizational standards for specialist palliative care for adult
patients (OSSPCAP) in Poland.
Methods: The National Consultants in Palliative Medicine and Palliative Care Nursing appointed an Expert
Group consisting of three physicians — independent researchers, two nurses and a lawyer to develop
the OSSPCAP. The work was done in three stages. 1. Literature analysis (Scopus and PubMed databases)
and legislation on palliative care. 2. Questionnaire development using Google Forms and survey of
120 respondents in two rounds using the Delphi method. 3. Analysis of the results by the Expert Group
during remote meetings and determination of the final version of the OSSPCAP.
Results: The response rate in the first round of the survey was 71 (59.17%) and in the second 56 (46.67%).
The first round yielded 73 positive responses (at least 70% criterion) to 97 questions; the second round
yielded 21 positive responses to 31 questions. For the remaining ten questions, the Expert Group members
discussed the results obtained with at least 50% criterion of positive responses. The results of both rounds
were analyzed, and the final version of the document was accepted by all members of the Expert Group.
Conclusions: Palliative care was divided into two types (levels): palliative care elements (palliative care approach)
and specialist palliative care. In the latter home, inpatient and outpatient care was distinguished
with ensuring public funding for all their organizational units by the State, including the integration into the
guaranteed benefits. Requirements and procedures for all organizational units of specialist palliative care were
depicted. Three specialist inpatient palliative care referral levels were offered taking into account complexity of
services for patients, under- and postgraduate education. Principles of qualifying patients for palliative care,
the development of research and education in palliative medicine and palliative care nursing were presented.

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References

  1. Ustawa z dnia 5 grudnia 1996 r. o zawodach lekarza i lekarza dentysty (Dz. U. z 2021 r. poz. 790 ze zm.) (in Polish).
  2. Ustawa z dnia 15 lipca 2011 r. o zawodach pielęgniarki i położnej (Dz. U. z 2021 r. poz. 479 ze zm.) (in Polish).
  3. Ustawa z dnia 25 września 2015 r. o zawodzie fizjoterapeuty (Dz. U. z 2021 r. poz. 553 ze zm.) (in Polish).
  4. Ustawa z dnia 8 czerwca 2001 r. o zawodzie psychologa i samorządzie zawodowym psychologów (Dz. U. z 2019 r. poz. 1026) (in Polish).
  5. Recommendation Rec (2003) 24 of the Committee of Ministers to member states on the organization of palliative care. Adopted by the Committee of Ministers on 12 November 2003 at the 860th meeting of the Ministers’ Deputies. Council of Europe. https://www.coe.int/t/dg3/health/Source/Rec(2003)24_en.pdf. (15.12.2021).
  6. Ustawa z dnia 27 października 2017 r. o podstawowej opiece zdrowotnej (Dz. U. z 2021 r. poz. 1050) (in Polish).
  7. Watanabe SM, Nekolaichuk C, Beaumont C, et al. A multicenter study comparing two numerical versions of the Edmonton Symptom Assessment System in palliative care patients. J Pain Symptom Manage. 2011; 41(2): 456–468.
  8. Woo A, Lechner B, Fu T, et al. Cut points for mild, moderate, and severe pain among cancer and non-cancer patients: a literature review. Ann Palliat Med. 2015; 4(4): 176–183.
  9. Bruera E, Kuehn N, Miller MJ, et al. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care. 1991; 7(2): 6–9.
  10. Coelho R, Ramos S, Prata J, et al. Heart failure and health related quality of life. Clin Pract Epidemiol Ment Health. 2005; 1: 19.
  11. Ustawa z dnia 15 kwietnia 2011 r. o działalności leczniczej (Dz. U. z 2021 r. poz. 711 z późn. zm.) (in Polish).
  12. Suffering is health–related when it is associated with illness or injury of any kind. Health related suffering is serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual and/or emotional functioning. http://pallipedia.org/serious-health-related-suffering-shs/. (04.12.2021).
  13. Severe illness is any acute or chronic illness and/or health condition that carries a high risk of mortality, negatively impacts quality of life and daily function, and/or is burdensome in symptoms, treatments, or caregiver stress. http://pallipedia.org/serious-illness/ (04.12.2021).
  14. https://hospicecare.com/what-we-do/projects/consensus-based-definition-of-palliative-care/definition/ (04.12.2021).
  15. Knaul F, Farmer P, Krakauer E, et al. Alleviating the access abyss in palliative care and pain relief – an imperative of universal health coverage: the Lancet Commission report. The Lancet. 2018; 391(10128): 1391–1454.
  16. Radbruch L, De Lima L, Knaul F, et al. Redefining Palliative Care-A New Consensus-Based Definition. J Pain Symptom Manage. 2020; 60(4): 754–764.
  17. Łuczak J, Kotlińska-Lemieszek A. Palliative care/hospice care/palliative medicine. Now Lek. 2011; 80(1): 3–15.
  18. National Cancer Institute. http://www.cancer.gov/publications/dictionaries/cancer-terms. (04.12.2021).
  19. Maciasz RM, Arnold RM, Chu E, et al. Does it matter what you call it? A randomized trial of language used to describe palliative care services. Support Care Cancer. 2013; 21(12): 3411–3419.
  20. Centeno C, Payne S, Garralda E. The worldwide status of palliative care. In: Cherny NI, Fallon MT, Kaasa S, Portenoy RK, Currow DC. ed. Oxford Textbook of Palliative Medicine. 2nd ed. Oxford. Oxford University Press, Oxford 2021: 3–8.
  21. Seaman JB, Lakin JR, Anderson E, et al. Interdisciplinary or Interprofessional: Why Terminology in Teamwork Matters to Hospice and Palliative Care. J Palliat Med. 2020; 23(9): 1157–1158.
  22. Rietjens JAC, Sudore RL, Connolly M, et al. European Association for Palliative Care. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol. 2017; 18(9): e543–e551.
  23. Sabatino CP. The evolution of health care advance planning law and policy. Milbank Q. 2010; 88(2): 211–239.
  24. Oliver D. Improving patient outcomes through palliative care integration in other specialised health services: what we have learned so far and how can we improve? Ann Palliat Med. 2018; 7(Suppl 3): S219–S230.
  25. Rozporządzenie Ministra Zdrowia z dnia 29 października 2013 r. w sprawie świadczeń gwarantowanych z zakresu opieki paliatywnej i hospicyjnej (tj. Dz. U. z 2018 r. poz. 742 ze zm.) (in Polish).
  26. Aria-Casais N, Garralda E, Rhee JY. et al. EAPC Atlas of Palliative Care in Europe 2019. Vilvoorde: EAPC Press; 2019. http://hdl.handle.net/10171/56787. (05.12.2021).
  27. Najwyższa Izba Kontroli – Delegatura w Bydgoszczy. Informacja o wynikach kontroli. Zapewnienie opieki paliatywnej i hospicyjnej. Październik 2019. (in Polish).
  28. Szukalski P. Czy Covid–19 wpłynął na zmianę miejsca zgonu Polaków? Demografia i Gerontologia Społeczna. Biuletyn Informacyjny, nr 5. http://hdl.handle.net/11089/37729 (24.12.2021 [in Polish]).
  29. Dzierżanowski T. Accessibility of palliative care for adults in Poland. Palliative Medicine. 2020; 12(2): 75–83.
  30. Ciałkowska-Rysz AD, Pokropska W, Łuczak J, et al. How much does care in palliative care wards cost in Poland? Arch Med Sci. 2016; 12(2): 457–468.
  31. Wesołek E. Availability of palliative and hospice care for patients staying in nursing homes and long–term care facilities – rationale, possibilities and barriers. Med Paliat Prakt. 2016; 10(3): 112–118.
  32. https://basiw.mz.gov.pl/index.html#/visualization?id=3368 (16.12.2021 [in Polish]).
  33. Scholten N, Günther AL, Pfaff H, et al. The size of the population potentially in need of palliative care in Germany--an estimation based on death registration data. BMC Palliat Care. 2016; 15: 29.
  34. Mitchell G, Etkind SN, Bone AE, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Med. 2017; 15(1): 102.
  35. Standard świadczenia usług medycznych „medycyna paliatywna”. Materiały dla świadczeniodawców i płatników. Ministerstwo Zdrowia i Opieki Społecznej, Warszawa, lipiec 1999 (in Polish).
  36. Lödel S, Ostgathe C, Heckel M, et al. Standard Operating Procedures (SOPs) for Palliative Care in German Comprehensive Cancer Centers - an evaluation of the implementation status. BMC Palliat Care. 2020; 19(1): 62.
  37. Kamal AH, Bausewein C, Casarett DJ, et al. Standards, Guidelines, and Quality Measures for Successful Specialty Palliative Care Integration Into Oncology: Current Approaches and Future Directions. J Clin Oncol. 2020; 38(9): 987–994.
  38. Adámková N, Růžička M. Australian Standards for Working with the Family in Palliative Care: Experiences from Practice concerning Implementing Organisational Change. Caritas et Veritas. 2020; 10(1): 100–115.
  39. Sakashita A, Kizawa Y, Kato M, et al. Development of a Standard for Hospital-Based Palliative Care Consultation Teams in Japan Using a Modified Delphi Method. J Pain Symptom Manage. 2018; 56(5): 746–751.e5.
  40. Rosenberg J, O’Connor M, Huang X. A qualitative evaluation of Australian palliative care services’ participation in National Palliative Care Standards self-assessment. Progress in Palliative Care. 2018; 26(2): 81–87.
  41. Fox K. The role of the acute care nurse practitioner in the implementation of the commission on cancer's standards on palliative care. Clin J Oncol Nurs. 2014; 18 Suppl: 39–44.
  42. Rajagopal Mr, Joad AK, Muckaden M, et al. Creation of Minimum Standard Tool for Palliative Care in India and Self-evaluation of Palliative Care Programs Using It. Indian J Palliat Care. 2014; 20(3): 201–207.
  43. Osman H, Abboud M, El Zein L, et al. Setting practice standards for palliative care in Lebanon--recommendations of the Subcommittee on Practice --National Committee for Pain Control and Palliative Care. J Med Liban. 2013; 61(4): 199–203.
  44. Zafar S, Currow D, Daugherty C, et al. Standards for Palliative Care Delivery in Oncology Settings. The Cancer Journal. 2010; 16(5): 436–443.
  45. Radbruch L, Payne S. White Paper on standards and norms for hospice and palliative care in Europe: part 1. Recommendations from the European Association for Palliative Care. Eur J Palliat Care. 2010; 16: 278–289.
  46. Radbruch L, Payne S. White Paper on standards and norms for hospice and palliative care in Europe: part 2. Eur J Palliat Care. 2010; 17(1): 22–33.
  47. Riley J. Standards and norms for palliative care in Europe. Eur J Palliat Care. 2009; 16(6): 265.
  48. Sasahara T, Kizawa Y, Morita T, et al. Development of a standard for hospital-based palliative care consultation teams using a modified Delphi method. J Pain Symptom Manage. 2009; 38(4): 496–504.
  49. Low J. Standards for palliative care pharmacy services. Aust J Pharm. 2007; 88: 28.
  50. Gilbar P. SHPA Standards of Practice for the Provision of Palliative Care Pharmacy Services. Journal of Pharmacy Practice and Research. 2015; 36(4): 306–308.
  51. Peden J, Grantham D, Paquin MJ. Hospice palliative care nursing standards: how do these apply to our practice? Alta RN. 2005; 61(4): 10–11.
  52. West PJ, Ferris F, Balfour H, et al. Not just any old standards ... 2002 Canadian Hospice Palliative Care Association standards. Can Oncol Nurs J. 2004; 14(2): 112–116.
  53. Hine J. Standards of palliative care in a renal care setting. EDTNA–ERCA J. 1998; 24(4).
  54. Finlay H, McCarthy M, Dallimore D. Setting standards for palliative care. J R Soc Med. 1994; 87(3): 179–181.
  55. Beattue R. Standard setting in palliative care. Nurs Stand. 1993; 7(19): 53.
  56. Marsh L. Developing standards in palliative care. Br J Nurs. 1992; 1(13): 684–687.
  57. Roulston E. Canadians' Views on Palliative Care. J Palliat Med. 2018; 21(S1): S9–SS14.
  58. Kiknadze N, Dzotsenidze P. Palliative Care Development in Georgia. J Pain Symptom Manage. 2018; 55(2S): S25–S29.
  59. Wenk R, Bertolino M, Ochoa J. Argentine palliative care standards. J Pain Symptom Manage. 2001; 21(5): 362–364.
  60. Lo TJ, Neo PSH, Peh TY, et al. Standards Development Subgroup of the National Strategy for Palliative Care Implementation Taskforce and Guidelines Implementation Workgroup. Improving Quality of Palliative Care Through Implementation of National Guidelines for Palliative Care. J Palliat Med. 2019; 22(11): 1439–1444.
  61. Temkin-Greener H, Ladwig S, Caprio T, et al. Developing palliative care practice guidelines and standards for nursing home-based palliative care teams: a Delphi study. J Am Med Dir Assoc. 2015; 16(1): 86.e1–86.e7.
  62. Lind S, Wallin L, Brytting T, et al. Implementation of national palliative care guidelines in Swedish acute care hospitals: A qualitative content analysis of stakeholders' perceptions. Health Policy. 2017; 121(11): 1194–1201.
  63. Sampson EL, van der Steen JT, Pautex S, et al. European palliative care guidelines: how well do they meet the needs of people with impaired cognition? BMJ Support Palliat Care. 2015; 5(3): 301–305.
  64. Currow DC, Hegarty M. Residential aged-care facility palliative care guidelines: improving care. Int J Palliat Nurs. 2006; 12(5): 231–233.
  65. Palliative care. Guidelines for good practice and audit measures. Report of a Working Group of the Research Unit, Royal College of Physicians. J R Coll Physicians London. 1991; 25(4): 325–328.
  66. Jones J, Hunter D. Consensus methods for medical and health services research. BMJ. 1995; 311(7001): 376–380.
  67. Boulkedid R, Abdoul H, Loustau M, et al. Using and reporting the Delphi method for selecting healthcare quality indicators: a systematic review. PLoS One. 2011; 6(6): e20476.
  68. Nipp RD, Greer JA, El-Jawahri A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010; 363(8): 733–742.
  69. Kaasa S, Loge J, Aapro M, et al. Integration of oncology and palliative care: a Lancet Oncology Commission. The Lancet Oncology. 2018; 19(11): e588–e653.
  70. Sobocki BK, Guziak M. The terms supportive and palliative care — analysis of their prevalence and use: quasi–systematic review. Palliat Med Pract 2021;15 (3): 248–253. DOI: 10 5603/PMPI. ; 2021: 0014.
  71. Ustawa z dnia 24 kwietnia 2003 r. o działalności pożytku publicznego i o wolontariacie (Dz.U. z 2020 r. poz. 1057 ze zm.) (in Polish).
  72. Voice of Volunteering. The EAPC Madrid Charter on Volunteering in Hospice and Palliative Care. Palliat Med Pract. 2018; 12: 129–130.
  73. Goossensen A, Somsen R, Scott R, et al. Defining Volunteering in Hospice and Palliative Care in Europe: An EAPC White Paper. Eur J Palliat Care. 2016; 23: 184–191.
  74. Ustawa z dnia 10 grudnia 2020 r. o zawodzie farmaceuty (Dz. U. z 2021 r. poz. 97) (in Polish).
  75. Klarare A, Hansson J, Fossum B, et al. Team type, team maturity and team effectiveness in specialist palliative home care: an exploratory questionnaire study. J Interprof Care. 2019; 33(5): 504–511.
  76. Reymond L, Parker G, Gilles L, et al. Home-based palliative care. Aust J Gen Pract. 2018; 47(11): 747–752.
  77. Klarare A, Lind S, Hansson J, et al. Leadership in specialist palliative home care teams: A qualitative study. J Nurs Manag. 2020; 28(1): 102–111.
  78. Fetz K, Vogt H, Ostermann T, et al. Evaluation of the palliative symptom burden score (PSBS) in a specialised palliative care unit of a university medical centre - a longitudinal study. BMC Palliat Care. 2018; 17(1): 92.
  79. Masel EK, Kitta A, Huber P, et al. What Makes a Good Palliative Care Physician? A Qualitative Study about the Patient's Expectations and Needs when Being Admitted to a Palliative Care Unit. PLoS One. 2016; 11(7): e0158830.
  80. Ustawa z dnia 20 lipca 2018 r. Prawo o szkolnictwie wyższym i nauce (Dz.U. 2020 poz. 85, z późn. zm.) (in Polish).
  81. Ustawa z dnia 30 kwietnia 2010 r. o instytutach badawczych (Dz. U. z 2020 r. poz. 1383). (in Polish).
  82. Sasahara T, Watakabe A, Aruga E, et al. Assessment of reasons for referral and activities of hospital palliative care teams using a standard format: a multicenter 1000 case description. J Pain Symptom Manage. 2014; 47(3): 579–587.e6.
  83. Ferrell BR, Temel JS, Temin S, et al. Integration of Palliative Care Into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline Update. J Clin Oncol. 2017; 35(1): 96–112.
  84. Kaasa S, Loge J, Aapro M, et al. Integration of oncology and palliative care: a Lancet Oncology Commission. The Lancet Oncology. 2018; 19(11): e588–e653.
  85. Vandaele B, Chambaere K, Devisch I. The Strengths and Challenges of Palliative Day-Care Centers: Qualitative Study With the Professionals Involved. J Palliat Care. 2017; 32(2): 55–60.
  86. Delgado-Guay MO, Chisholm G, Williams J, et al. Frequency, intensity, and correlates of spiritual pain in advanced cancer patients assessed in a supportive/palliative care clinic. Palliat Support Care. 2016; 14(4): 341–348.
  87. Majkowicz M, Czuszyńska Z, Leppert W, et al. Practical application of ESAS (Edmonton Symptom Assessment System) in palliative care. Nowotwory. 1998; 48(5): 847–857.
  88. Hołoń A, Grądalski T. Edmonton Symptom Assessment System: Psychometric validation of six-point Verbal Rating Scale in Polish hospice setting. Palliative Medicine in Practice. 2021; 15(2): 144–152.