patients-understanding-of-terminology-used-in-palliative-care-services

Poster21701:Layout 20/04/2015 14:29 Page Norfolk and Norwich University Hospitals NHS Foundation Trust Patients' Understanding of Terminology used in Palliative Care Dr Sanda Hlaing, Dr Nicola Holtom, Dr Abi Ponnampalam, Department of Palliative Medicine, Norfolk and Norwich University Hospitals, Norwich Background Good communication stipulates that health care professionals avoid using jargon to facilitate understanding During palliative care outpatient assessments many patients who were already known to a Community Palliative Care Specialist Nurse asked whether they could be supported by a Macmillan Nurse suggesting that they did not understand that these roles are interchangeable In addition, as hospices have evolved to provide more active interventions and complex symptom control, the change in terminology to 'Specialist Palliative Care Unit’ (SPCU), although logical, does not seem to be well understood by patients Aim • Establish patients’ understanding of the terms commonly used in palliative care • Ascertain whether patients who were already known to the palliative care service (community or hospital) had a clearer understanding of this terminology compared to patients newly referred Method • 20 participants with life limiting disease attending a palliative care outpatient clinic were asked about their understanding of the terms 'Specialist Palliative Care Nurse'(SPCN), 'Macmillan Nurse', 'Hospice' and 'Specialist Palliative Care Unit' • Age range 31-86 years, median 56 years • New patients and existing patients (who had been attending clinic for more than months) were sampled to identify any potential differences in their understanding (New= 9, Old=11) • Semi- structured qualitative interviews were recorded and transcripts analysed using the principles of thematic analysis • Interviews were conducted by clinicians SH and AP, and cross validated Results Only patients (20%) were able to say that the roles of the Macmillan Nurse and the SPCN were similar Two of these patients were already known to the community specialist palliative care nursing team.6 Patients reported not knowing what the role of the SPCN entailed, even though of them were already known to the community team This was similar to the number of patients (7) who reported not understanding the role of the Macmillan Nurse Key Findings Discussion The results of this study suggest a considerable discrepancy between what is meant by these terms commonly used in practice by healthcare professionals, and what is actually understood by patients As palliative care continues to develop and the traditional roles associated with Hospices and Macmillan Nurses evolve to meet the changing needs of society, it is important that palliative care professionals endeavour to improve their communication with patients in order to explain the roles and terminology used to enhance understanding of the palliative care services that are available A lack of awareness and understanding of palliative care and related services is one of the possible reasons for disparities in service use.1 One aim of the European Association of Palliative Care is to establish uniformly accepted definitions of the essential elements in palliative care to promote quality, consistency and reliability of those services.2 A 'Palliative Care Glossary of Terms' patient information leaflet would be of benefit to avoid lack of consistency.3 Significantly the discrepancy noted in patients' understanding of these commonly used terms seems to be elicited equally in patients new to the service and those who were already known This would suggest that healthcare professionals are not always explaining these roles as clearly as we might think This raises the question of whether patients should have these roles explained to them routinely at their initial palliative care assessment, and whether a 'Palliative Care Glossary of Terms' patient information leaflet should also be provided Conclusion Patients’ understanding of these specific terminologies, used frequently by palliative care services are variable Lack of understanding could have a direct impact on the utilisation of services and patient satisfaction of services provided However, the number of patients in this study was small and this subject would benefit from further study References Four patients (20%) thought that the SPCN performed a similar role to the cancer clinical nurse specialists and only patients (10%) associated SPCNs with End of Life Care (EOLC) Koffman, et al Demographic factors and awareness of palliative care and related services Palliative Medicine 2007; 21: 145_153 All the patients (100%) were confident in associating the term hospice with End of Life Care This contrasted with only patients (15%) who associated end of life care with the term SPCU In fact over half of the patients (11/20) reported not understanding the term SPCU A similar number (10/20) thought that a SPCU was similar to an acute oncology/ hospital ward or outpatient clinic Radbruch L, Payne S and the Board of Directors of the EAPC White Paper on standards and norms for hospice and palliative care in Europe: part 1, European Journal of Palliative Care, 2009; 16(6) With regard to the term hospice, less than a third of patients (6/20) were aware that they provided services such as complex symptom control whereas 50% of patients associated the SPCU as providing specialist expertise in pain and symptom management Dr K Ryan, IAPC Glossary of Terms Palliative Care Programme, Clinical Strategy and Programmes Directorate http://www.hse.ie/eng/ about/Who/ clinical/natclinprog/pallcareprog.html design and layout by Medical Illustration Dept • NNUH