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Innovations in Palliative Care: Renal Support Care for End-Stage Kidney Disease Patients

WSU

2 Innovations in Palliative Care: Renal Support Care for End-Stage Kidney Disease Patients Patients with end-stage kidney disease (ESKD) experience poor quality of life, significant symptom burden, and high mortality (Nair & Wilson, 2019). Hence, there is need for innovative interventions to help ESKD patients better manage their symptoms and live with the disease. In this regard, Renal Supportive Care (RSC) was developed to provide the needed solution. This innovative approach constitutes the focus of this paper. More specifically, the paper highlights the population that it benefits, the solutions it offers, barriers in implementing it, and its impact on palliative care. Renal Support Care RSC is an interdisciplinary approach to EKSD care that integrates supportive care and renal medicine. It also entails advanced care planning and end-of-life care (Government of New South Wales, 2018). It helps to avoid medicalisation of the extensional and psychological needs associated with renal replacement patients. The innovation addresses the attention given to patients’ families and caretakers. The support offered by patient caretakers and families is essential because the pressure that results from financial burdens during palliative and end-of-life care are significant (Palliative Care Australia, 2017). Besides, unaffected caretakers and family members of palliative care patients often experience a considerable emotional burden (Palliative Care Australia, 2017). The approach also takes into consideration communication skills, which are essential for proper decision making in palliative care. Target Palliative Population RSC aims to benefit patients with chronic kidney disease (CKD) and ESKD as well as their families/carers. The patients are divided into four groups. The first group comprises

3 conservative patients who do not want renal replacement treatments. This group may be unsuitable for dialysis because of reasons such as advanced dementia, or they might have discussed it with their nephrologists (Government of New South Wales, 2018). Hence, due to clinical conditions, such as an advanced comorbid illness, a decision is made that dialysis will not be undertaken. The second group encompasses patients who are planning to have dialysis or those already doing it, and for whom the symptoms are burdening, warranting specialised management. Such patients’ quality of life is significantly impacted by symptoms to the extent of causing distress and suffering, and therefore require an improved approach for managing the symptoms (Government of New South Wales, 2018). The third group are patients who want to withdraw from dialysis. A patient receiving dialysis could be struggling to maintain their quality of life due to progressive deterioration or a sudden onset of life-limiting diagnosis (Victoria State Government, 2016). These patients may want to discuss with their doctors concerning their wishes for future care. The verdict to withdraw from dialysis does not happen from the hospital alone, but after discussions with the family, the nephrologist, and the patient (Victoria State Government, 2016). The last category comprises patients with other life-limiting comorbidities that lead to functional and physical decline, such as end-stage respiratory disease and cancer. For instance, the patient might have a recurrence of past cancer or newly diagnosed cancer while undergoing dialysis. RSC can start attending to these patients once the cancer therapy comes to an end or are considered for palliative care. Solutions Offered by RSC The innovation offers various solutions concerning the treatment of CKD/ESKD. One of them is pain and symptom control. Patients receiving RSC get appropriate CKD/ ESKD

4 management and other interventions that help in managing the disease (Kidney Health Australia, 2017). In this regard, the medical team works closely with patients, families, and carers to ensure that pain and other symptoms are controlled appropriately. RSC also seeks to provide greater choice and autonomy concerning the decision on whether to start dialysis or withdraw from it. During decision making, patients are assured that RSC is not an end-of-life procedure and that they will live for months or years with minimal kidney function (Victoria State Government, 2016). RSC targets enhanced coordination of patients with CKD/ESKD and other life-limiting illnesses. Through the programme, patients undergo routine screening and their care requirements are regularly assessed and reviewed by the renal and palliative teams (Victoria State Government, 2016). Regular screening and assessment ensure patient issues are identified on an ongoing basis and appropriate interventions undertaken accordingly. The programme also aims to ensure the care needs of patients are provided in an agreed and planned manner that minimises unnecessary symptom burden and distress. Patients and families are informed about what to expect over the coming weeks and have their requirements addressed. Implementation Barriers Some barriers can hinder the implementation of RSC. One of them is ineffective communication. Communication is vital for both patients and caretakers/families in end-stage disease (Keeley, 2017). Hence, discrepancies should be avoided between what the family and patient understand concerning prognosis and what physicians are attempting to convey. An implementation challenge is that families may have unrealistic expectations of treatment or may not engage in it. Also, clinical discussions should not be done hurriedly because time limitations can cause ineffective communication in a healthcare setting. With this innovation, consultation

5 time is set to 30 minutes (Purtell et al., 2018). When clinic demand is high, this time becomes pressed, leading to ineffective visits. Another barrier is economic limitation. Patients who reside in rural regions are economically disadvantaged (Australian Institute of Health and Welfare, 2019). Patients prefer to be treated near their homes to cut costs involved in transport and relocation when seeking treatment at clinics based in metropolitan areas (Victoria State Government, 2016). Therefore, RSC implementation in rural areas requires a different model for patients to have a similar standard of care experienced in metropolitan regions. Lack of referrals to the service and limited understanding on the part of patients are also hindrances to RSC implementation. Physicians and general practitioners tend to refer patients based on previous personal exposure (Wright et al., 2018). Therefore, RSC services require onthe-ground outreach activities to gain local physicians’ trust and respect. In other words, contact between local physicians and palliative care service should be enhanced. In terms of patient understanding, most patients do not understand the supportive role of palliative care services within nephrology (Axelsson et al., 2019). Carers and patients often view palliative care as endof-life care and not a role that supports patients through diagnosis to treatment. Impact on Palliative Care RSC intervention can impact palliative care in various ways. It can lead to improved individual and total symptom burden in dialysis patients (Sirwarda et al., 2020). This supports RSC’s role as a management assistant in patients, whereby it helps ensure that symptoms such as pain are managed more effectively. Also, the intervention can boost psychological support. People with kidney disease normally experience psychological distress (Kokoszka et al., 2016). Anger, anxiety, and depression can manifest as reactions to diagnosis, disease management,

6 and/or treatment side effects (Kokoszka et al., 2016). Through the assessments and reviews involved in the RSC intervention, the health care team investigates physical causes and possible medication side effects that result in psychological distress and make referrals to a specialist (Kidney Health Australia, 2017). Moreover, RSC can facilitate palliative care planning and the execution of the responsibilities and roles vital for attaining a shared care relationship. For example, good communication between the patient and their family and the health professionals involved in their care allows a smooth transition from in-centre to home care by ensuring effective clinical and technical support (Renal Society of Australia, 2016). Conclusion RSC is an innovative approach to renal care that aims at supporting ESKD patients and their families/carers, especially when there is a symptom burden that needs expert management. The collaboration involves kidney health care and palliative care to meet the unique needs of patients and their families. Nonetheless, RSC implementation can encounter various barriers, including ineffective communication, economic limitations, lack of referrals to the service, and lack of understanding among patients. In spite of these barriers, however, the positive impact of the innovation on palliative care is well documented in scholarly literature.

7 References Australian Institute of Health and Welfare. (2019). Rural & remote health. AIHW. https://www.aihw.gov.au/reports/rural-health/rural-remote-health/contents/rural-health Axelsson, L., Benzein, E., Lindberg, J., & Persson, C. (2019). End-of-life and palliative care of patients on maintenance haemodialysis treatment: A focus group study. BioMed Central, 18(89). https://doi.org/10.1186/s12904-019-0481-y Government of New South Wales. (2018). NSW renal supportive care service model. https://www.aci.health.nsw.gov.au/__data/assets/pdf_file/0020/443072/Renal-SupportiveCare-Service-Model.pdf Keeley, M.P. (2017). Family communication at end of life. Behavioural Sciences, 7(3). https://doi.org/10.3390/bs7030045 Kidney Health Australia. (2017). An introduction to symptom management and supportive care. Kidney Health Australia. https://kidney.org.au/uploads/resources/an-introduction-tosymptom-management-and-supportive-care-handbook.pdf Kokoszka, A., Leszczynska, K., Radzio, R., Daniewska, D., Lukasiewicz, A., Orzechowski, W.M., Piskorz, A., & Gellert, R. (2016). Prevalence of depressive and anxiety disorders in dialysis patients with chronic kidney disease. Archives of Psychiatry and Psychotherapy, 18(1), 8-13. https://doi.org/10.12740/APP/61977 Nair, D., & Wilson, F.P. (2019). Patient-reported outcome measures for adults with kidney disease: Current measures, ongoing initiatives, and future opportunities for incorporation into patient-centred kidney care. The American Journal of Kidney Disease, 7(6), 791-802. https://doi.org/10.1053/j.ajkd.2019.05.025

8 Palliative Care Australia. (2017). The financial costs of families caring for family members receiving palliative care and end-of-life care. Palliative Care Australia. https://palliativecare.org.au/wpcontent/uploads/dlm_uploads/2017/07/PCA019_Economic-Research-Sheet_7a_Cost-ofCaring.pdf Purtell, L., Sowa, P.M., Berquier, L., Scuderi, C., Douglas, C., Taylor, B., Kramer, K., Hoy, W., Healy, H., & Bonner, A. (2018). The Kidney Supportive Care programme: Characteristics of patients referred to a new model of care. BMJ Supportive and Palliative Care. https://eprints.qut.edu.au/126720/7/126720.pdf Renal Society of Australia. (2016). Annual conference 2016. Renal Society of Australia. https://eprints.qut.edu.au/96388/1/RSAJ%20Abstracts%202016%20-%20Final.pdf Sirwarda, A.N., Hoffman, A.T., Brennan, F., Li, K., & Brown, M. (2020). Impact of renal supportive care on symptom burden in dialysis patients: A prospective observational cohort study. Journal of Pain and Symptom management, 60(4), 725-736. https://doi.org/10.1016/j.jpainsymman.2020.04.030. Vitoria State Government. (2016). Renal integrated care pathway: Guide for Victorian renal services. Victoria State Government. https://www2.health.vic.gov.au/Api/downloadmedia/%7B7E0A1D6A-4908-490C-B58F9BC76E953840%7D Wright, J., Glenister, K., Thwaites, R., & Terry, D. (2018). The importance of adequate referrals for chronic kidney disease management in a regional Australian area of nephrologist workforce shortage. Australian Journal of General Practice, 47(2), 58-62. https://doi.org/10.31128/AFP-08-17-4302...