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S 07 Parallel session

S 07  End of life Care
Saal 1, 27th September 2015, 11:00 – 12:30

Programme of the Session:

GS: Helen Noble (UK)
Palliative Care in Chronic kidney disease: capturing impact on patient and carers

O 09
Renal supportive care in Victoria, Australia: Capacity building a whole state!

Deirdre Fetherstonhaugh (Australia)
O 10
Attitudes of renal staff towards death shape the service delivery
Danielle Heffernan (Australia)

O 11
Introduction of a patient reported symptom assessment scale into a large ESKD program
Kerry Linton (Australia)

O 12
The palliative care option for patients with end stage renal disease
Zoya Grimberg (Israel)

GUEST SPEAKER
Palliative Care in Chornic kidney disease: capturing impact on patient and carers

H. Noble1
1School of Nursing and Midwifery, Queens University Belfast, UK

Internationally there is a move to improve quality of death and access to palliative care in order to provide a dignified death, (American Medical Association  2012; National End of Life Care Programme, 2012) and to ensure those with non-malignant disease including end-stage renal disease, have equitable access to appropriate and supportive care services towards the end-of-life (Small et al 2005). There are few service models designed to support patients with renal disease who require palliative care and little known about optimal management. Experience of palliative care is largely unknown although these patients have significant unmet needs (Noble et al 2010) and UK policy recommends identification of those requiring palliative care early in the disease trajectory. Patients and carers may also avoid conversations about the end of life (Noble et al 2014).

The PAlliative Care in chronic Kidney disease (PACKS) study is exploring quality of life, symptoms, cognition, frailty, performance decision making, costs and impact on carers in people with advanced chronic kidney disease managed without dialysis and is funded by the National Institute of Health Research in the UK. In this multicentre (10 sites), longitudinal study, patients are being recruited once they have made the decision not to embark on dialysis. Carers are asked to opt-in with consent from patients. The study is designed to capture patient and carer profiles understand trajectories of care-receiving and care-giving and with the aim of optimising palliative care for this population and improving clinical outcomes for patients and the experiences of care givers.

References

American Medical Association. AMA policy on end of life care (2012) http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/ Q10about-ethics-group/ethics-resource-center/end-of-life-care/ama-policy-end-of-life-care.page?

National End of Life Care Programme. Transforming end of life care in acute hospitals: The route to success ‘how to’ guide (2012) http:// 704
Q12webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/ search-resources/resources-search/publications/imported-publications/ transforming-end-of-life-care-in-acute-hospitals.aspx

Noble H, Porter S & Price J (2014) The challenge to health professionals when carers resist truth-telling at the end of life: a qualitative secondary analysis. Journal of Clinical Nursing. 24(7-8), 927-936

Noble H, Meyer J, Kelly D, Johnson B, Bridges J (2010) Examining renal patients death trajectories without dialysis End of Life Care 4 (2): 26-34

Small N, Barnes S, Gott M, Payne S, Parker C, Seamark D, et al. Dying, death and bereavement: a qualitative study of the views of carers of people with heart failure in the UK. BMC Palliative Care. 2009;8(1):6.

BIOGRAPHY OF THE GUEST SPEAKER

O 09
Renal supportive care in Victoria, Australia: Capacity building a whole state!

D. Fetherstonhaugh1,2, M. Boughey1
1Centre for Palliative Care, St Vincent's Health, Melbourne, Australia; 2Australian Centre for Evidence Based Aged Care (ACEBAC), La Trobe University, Melbourne, Australia

Background: For some people with ESKD with multiple co-morbidities and high symptom burden dialysis may not necessarily be in their best interests as it may actually negatively affect their quality of life and be of itself, extremely burdensome. These people may benefit from a more supportive/palliative approach to their care and treatment. The Victorian Government Health Department (Australia) through their Renal Health Clinical Network has funded the development of a renal supportive care pathway to improve consistency of supportive care service provision across the state and address service gaps.
Objectives: To capacity build renal services in Victoria (population @ 5.8 million), so that they can implement the Victorian renal supportive care pathway.
Methods: A capacity building framework identifying those elements of a renal health service that are necessary for implementation of a supportive care pathway was developed, focusing on: collaboration between palliative care and renal services, screening of patient symptoms; educating health professionals about renal supportive care; and patient education and information.
Results: Each renal health service was provided with some seed funding from the Victorian Government to implement elements of the capacity building framework. Services have identified barriers and enablers which have been shared across services and used to inform and further progress capacity building.
Conclusion/Application to practice: In order to implement a renal supportive care pathway within renal services they need to have the capacity to do so. This paper will report Victoria’s approach to this capacity building to ultimately provide best practice renal supportive care.

Disclosure: No conflict of interest declared

O 10
Attitudes of renal staff towards death shape the service delivery

D. Heffernan1, H. Healy1, K. Havas2, A. Bonner2,1
1Kidney Health Service, Royal Brisbane & Women's Hospital, Brisbane, Australia; 2School of Nursing, Queensland University of Technology, Brisbane, Australia

Background: Attitudes of health professionals towards death are known to influence whether conversations with patients about end of life care are initiated. Understanding attitudes towards death in a workforce caring for people approaching organ death is important, more so given the increasing numbers opting either for conservative care or choosing to withdraw from life sustaining kidney replacement therapy.
Objectives: To understand the attitudes towards death of RHPs guide change in service delivery for renal supportive care (RSC).
Methods: A cross-sectional survey of RHP at a multi-site renal service using the Death Attitude Profile Revised questionnaire, a widely used standardised measure of attitudes towards death. Demographic characteristics were also collected.
Results: Of the 65 respondents, (60% response rate) the majority were over 40 years of age (66.2%), female (79.5%), held a Christian belief (73.4%), and were nurses (84.4%). Overall RHPs demonstrated greater acceptance of death rather than avoidance or fear of death. There were no differences of attitudes between ages, gender, years of renal experience, or profession of RHP. Older participants were significantly more likely to have greater escape acceptance than younger participants (mean 3.91 vs 3.12, p = .03).
Conclusion/Application to practice: RHP whose attitude to death is positive is more likely to have a positive attitude towards initiating end of life care, in line with patients’ wishes. The evolution of a RSC model and the development of tools to assist RHP in delivering an integrated Renal Supportive Care Program (iReSpCT) are driven by this evidence.

Disclosure: No conflict of interest declared

O 11
Introduction of a patient reported symptom assessment scale into a large ESKD program

K. Linton1
1Nephrology, Monash Health, Melbourne, Australia

Background: Renal supportive care, the provision of care to people with end stage kidney disease (ESKD) who do not opt for renal replacement therapy(RRT) is developing in Australia as one of the three pathways of renal service delivery.
Patients with ESKD have a high mortality, significant symptom burden and poor quality of life, whether they opt for RRT or not. The symptom burden of these patients is not well documented although recent studies have shown that patients are seeking holistic care and improved quality of life rather than extended length of life. The Palliative care Outcome Score (POS) was developed in 1999 by Professor Irene Higginson, with a later variation, POS-S Renal introduced to evaluate the symptom burden in renal disease. The use of POS-S Renal, a patient reported outcome measure, is consistent with the principles of patient-centred care.
Objectives: POS-S Renal has been introduced in a large ESKD clinic to investigate the symptom burden of the patient population, highlight care prioities and inform resource allocation.
Methods: The POS-S Renal has now been completed on approximately 1000 occasions by patients  with CKD4/5. The results are reviewed during individual consultation and items of concern addressed. Results are tabulated and analysed to inform the care needs of the population.
Results:Patient reported symptoms confirm that ESKD patients continue to have a significant symptom burden, with pain, movement disorders and poor mobility previously under-reported.
Conclusion/Application to practice: The POS-S Renal is encouraging patients to voice issues which concern them. The findings highlight the need for multidisciplinary teams in ESKD care.

Disclosure: No conflict of interest declared

O 12
The palliative care option for patients with end stage renal disease
Z. Grimberg1, Y. Golland1, J. Barry1
1Hemodialysis, Madical Weastern Galilii Center, Nahariy, Israel

Background: Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated
with life-threatening illness. Palliatie care manages the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain, physical, psychosocial and spiritual problems.
Objectives: To raise the awareness of the palliative care option and to establish a multidisciplinary team.
Methods: The multidisciplinary team consisted of a doctor, two nurses and a social worker. Each member of the team worked in his particular field and received guidance as needed from the hospital's palliative oncology clinic.
The criteria for identifying the patient were: old age, comorbidities using the Charlson Comorbidity Index, negative response for the Surprise Question, multi symptoms, impaired quality of life, recommendations by medical staff and agreement of the patient and his family.
Results: 10 patients were identified during a 5 month period. One was treated by palliative care only and 9 received a combination of dialysis and palliative care. The average number of hospitalizations was 20.5 days per patient. To date, 50% are still alive. Those who died all died in the hospital.
Conclusion/Application to practice: Palliative care is an option for the elderly, frail and ill CKD5 patient. However, awareness of this option is low among our staff, patients and their families. It is therefore important to educate staff and to explain the option of palliative care to patients in the early stages of the pre-dialysis clinic.

Disclosure: No conflict of interest declared