Renal palliative and supportive care in South Africa – a consensus statement

In South Africa, there is a high burden of end-stage kidney disease (ESKD). This is due to the burgeoning epidemics of communicable diseases like HIV/AIDS and non-communicable diseases, particularly hypertension and diabetes mellitus. One of the most difficult situations encountered by healthcare professionals dealing with patients with ESKD in South Africa is the management of a conservative or palliative care pathway for the many patients who have no other option. Patients with advanced chronic kidney disease (CKD) have a high burden of physical and psychosocial symptoms, poor outcomes and high costs of care. Many patients are managed in primary healthcare settings and either do not have access to palliative care or are not referred appropriately. Renal supportive and palliative care involves a multidisciplinary approach to managing patients with ESKD, to ensure that symptoms are managed optimally and to provide support during advanced disease. It aims to improve quality of life for patients and their families and must be provided alongside curative medical care. This support should include those unable to gain access to life-saving dialysis and it should also provide care for patients where dialysis is not the best option. The aim of this consensus statement is to assist healthcare providers to improve the management of symptoms and biopsychosocial factors of patients with ESKD in a South African context. The document was compiled through consensus building among healthcare professionals across South Africa. The professionals represented included nephrologists, palliative care physicians, social workers, nurses, paediatricians and hospital managers. We wish to acknowledge the contribution of Dr Frank Brennan, a leading expert in renal palliative and supportive care, who assisted greatly in the compilation of this document.


Service provision and collaborative care
95 -The current challenges to providing an integrated renal supportive care/palliative care service -Critical elements of creating a renal supportive clinic - Table 3 The incidence of end-stage kidney disease (ESKD) is increasing worldwide. In South Africa, the high degree of ESKD is due to burgeoning epidemics of communicable (such as HIV/AIDS) and non-communicable diseases, particularly hypertension and diabetes mellitus. However, the access to life-saving dialysis and transplantation is severely limited in the public health sector. Palliative and renal supportive care (RSC) aims to relieve the suffering of patients and families. Although we are unable to dialyse all patients, we can advocate that all patients receive equitable and comprehensive renal supportive and palliative care (RSC/ PC). This care must be provided alongside treatment that may be curative and must not only be initiated at the very end of a patient's life [1]. In some cases, it may need to occur at the time of diagnosis, for example in the case of children with multi-organ involvement.
The aim of this document is to improve the care of all patients with ESKD whether receiving renal replacement therapy (RRT) or not, by integrating nephrology care, palliative care and family practice. It aims to align with the fundamental principles of Universal Health Coverage (UHC) [2] and has the secondary goal of creating awareness regarding an alternative conservative management pathway, where appropriate. It has been written by a multiprofessional team in the hope that it will encourage multidisciplinary care and is intended for use by healthcare professionals in primary care, internal medicine and nephrology in South Africa.
This document was compiled through consensus building among healthcare professionals across South Africa. On 11 June 2019, 60 participants conducted a workshop in Cape Town to define and make recommendations on the main concerns and needs of ESKD patients. The professionals represented included nephrologists, palliative care physicians, social workers, nurses, paediatricians and hospital managers from across the country. The workshop also hosted Dr Frank Brennan, a leading expert in renal palliative and supportive care. He is renowned internationally, for his work on human rights in health care.

INItIAtION OF RENAL REPLAcEMENt tHERAPY
"Provision of dialysis should benefit the patient, and not just prolong life" [3].
In South Africa, there are substantial limitations to accessing chronic dialysis [4]. Treatment options are limited in the public sector. Many patients, therefore, are on a conservative pathway, not through choice or medical recommendation, but through circumstance. However, regard-less of dialysis availability, healthcare professionals should address the patient's personal goals and aims for the future.

Understanding and communicating prognosis
The ability to prognosticate and communicate prognosis is essential [5]. This may be a long process and require frequent repeating. There are a few studies that combine prognostic factors in clinically useful prediction tools [6,7].

Patient-centred decision making
In ideal circumstances, patient-centred decision making should be implemented by a multidisciplinary team [8,9]. It should be a family orientated and culturally appropriate process where the team and patient agree on a specific course of action based on a common understanding of the patient's treatment goals. It should consider the benefits and harms of the treatment and the likely outcomes. All the possible options should be discussed openly. This should include all dialysis modalities, withholding or withdrawing dialysis and an "opt-out" option for the patient in the future after a trial of dialysis. Access to private medical insurance should also be discussed.
The timing of the decision-making process is important. The Supportive and Palliative Care Indicators Tool (SPICT) [10,11] advises that these discussions should be held at or when: • Stage 4 or 5 chronic kidney disease (CKD) (estimated glomerular filtration rate (eGFR) < 30 mL/min/m 2 ) with deteriorating health -There is also strong evidence for using the Kidney Failure Risk Equation (KFRE) to better determine progression to ESKD (kidneyfailurerisk.com) [12] • Kidney failure complicates other life-limiting conditions or treatment • Ceasing or changing dialysis modality.
Periodic review of the proposed decision should be included in the plan. The timing of these reviews should be agreed on at the initial interview. The review should include whether dialysis is still benefiting the patient's personal aims or goals and should be revised after any new critical event (e.g. after a stroke).
The Renal Physicians Association of America suggests that it is reasonable to consider forgoing (not starting or ceasing) dialysis for the following groups of patients [13]: • There is a condition precluding the technical process of dialysis (e.g. an uncooperative patient with advanced dementia) or the patient is medically unstable (e.g. suffers from profound hypotension).
• A terminal non-renal illness (we acknowledge that some may perceive benefit and choose to undergo dialysis).
• Refusal/discontinuation of dialysis in a patient with decision-making capacity, who is fully informed and making a voluntary choice.
• Patients who no longer possess decision-making capacity and who have previously indicated refusal of dialysis in an advanced care directive, or those whose legal agents/surrogates refuse dialysis or request that it be discontinued.
• In the case of children, it may also be appropriate to withhold renal replacement if the family situation is unable to support the child (see paediatric section for more details).
• Patients over the age of 75 years, who have two or more of the following poor prognostic criteria: -Depend on others for care due to increasing physical and/or emotional and/or mental health problems -Significant weight loss (> 10%).
• The patient asks for palliative care, or chooses to reduce, stop or have no treatment.

SYMPtOM MANAGEMENt IN ESKD
Patients with advanced CKD experience multiple symptoms that contribute to their disease burden [16]. These guidelines are compiled to assist healthcare providers in managing patients with symptoms associated with advanced CKD.

Validated scoring tools
The routine screening of physical and emotional symptoms is recommended at each consultation using a validated tool. Recommended tools include: 1) Integrated Palliative Care Renal Outcome Scale-Renal (IPOS-Renal) [17][18][19] (see Addendum 3).
The causes of a patient's symptoms other than the kidney disease should always be considered. Table 1 [36,37,39]. All breaking bad news conversations, especially around withholding or withdrawing dialysis, should be managed by a senior doctor on the team.
One of the most difficult challenges is the discussion with a patient in the public sector who cannot be offered dialysis. It is essential that everybody gives the same message when communicating with patients and families in order not to create false hope or distrust. All difficult conversations should be clearly documented in the patient notes. Such conversations should always be followed by reflection and, if necessary, debriefing. The moral distress of doctors involved in withdrawing or withholding dialysis requires collegial support from managers and other healthcare providers.
There are many barriers to having essential conversations with patients and families. Patient and/or family may misunderstand the diagnosis and prognosis, there may be cultural differences, clinician attitudes and beliefs around palliative care, lack of training and shortage of time available for difficult conversations. These conversations should aim to manage conflict, to acknowledge and address all emotions, to improve prognostic awareness and align care with expectations of patients and families.
The following are recommended essential conversations that should take place between healthcare professionals, patients and families: renal palliative and supportive care in south africa

Advance Healthcare Planning
Advance Healthcare Planning includes discussions with individuals about their preferences and wishes. They are best held when patients are relatively well, able to communicate effectively and have the mental capacity to make independent decisions. They should address values, goals and outcomes that are important to patients and families. The conversation should be ongoing and not a single event with the possibility of review if circumstances change. The plan will assist the healthcare team to make treatment recommendations that are aligned with specified values. This becomes increasingly important when the patient is no longer able to make or verbalise decisions independently. Research shows that patients expect

PRESERVING RENAL FUNctION AND MANAGING cOMPLIcAtIONS OF RENAL FAILURE
Screening for CKD must be conducted in high risk individuals at each interaction with the healthcare system. High risk individuals in South Africa include those with: • Diabetes • Hypertension • Urological disorders • Family history of renal disease • Drug addicts ("tik", cocaine) • HIV-positive individuals.
The guidelines that follow are specifically aimed at CKD stages 4 and 5 ( Figure 1). Table 2 describes management strategies to preserve residual renal function and manage complications of CKD.

END-OF-LIFE cARE IN END-StAGE KIDNEY DISEASE
Ethical and compassionate care is the main goal when managing a patient at the end of life. This period can be defined as a "period of irreversible functional decline prior to death" [49]. Care plans need to be adjusted to allow patients to have a "good death", where distressing symp-  renal palliative and supportive care in south africa Figure 1. Classification of chronic kidney disease by gFr and degree of albuminuria. Patients at low or moderate risk for disease progression (green/yellow) should be followed up at least yearly, those at high risk (orange) twice-yearly, and those at very high risk (red) should be seen three or more times per year, as required. reproduced with permission from KdigO [40,41] • All members of the care team should communicate effectively with one another so that the advanced care plan, should there be one, is respected and instituted.
• All members of the care team should be adept at communicating compassionately with the patient and the family in order to break bad news and initiate discussions around withdrawing or withholding artificial nutrition, inappropriate hydration and medically inappropriate investigations or interventions.
• The patient's decision regarding place of death should be respected as far as possible.
• Medication management: -Rationalise medications: stop those not contributing to improvement in quality of life.
-Prescribe medication to treat symptoms and anticipated problems.
-Use an effective route, especially if the patient cannot swallow, e.g. subcutaneous, intravenous or intramuscular.
• Nursing care should be focused on dignity and avoiding unnecessary nursing interventions.
• Family care: -Families need to be compassionately informed about the prognosis and should be provided with information around the expected symptoms and management. Healthcare providers should be led by the families around the type and amount of information provided.
-Children need to be appropriately addressed with suitable referrals being made where necessary.
-Prepare the patient's family and carers regarding bereavement, building resilience and practical aspects of handling the deceased's body and dealing with undertakers -all of which should be respectful of the patient's cultural and religious preferences.
• Spiritual care should be offered and provided to all patients and families.
• Support for healthcare professionals involved in caring for the deceased should be provided and include debriefing and building resilience.
• Auditing and reflection of this process would allow improvement in the managing of the dying patient with ESKD.

SERVIcE PROVISION AND cOLLAbORAtIVE cARE the ideal model for palliative care in cKD [16]
Healthcare utilisation in advanced CKD is high [50]. There are limited data on the cost-effectiveness of renal supportive care frameworks [51]; however, there is more solid evidence for other illness, such as cancer [50]. Supportive care may reduce hospitalisations, intensive care admissions and emergency room visits and result in fewer deaths in acute care facilities [50]. Cost benefit also needs to be analysed in terms of personal cost. The burden experienced by families include physical, emotional, social, and economic dimensions. An integrated service from the start of dialysis until death and into bereavement to support families has been reported as an option to improve clinical care [52].
renal palliative and supportive care in south africa

critical elements of creating a renal supportive clinic
There are numerous aspects that need to be considered when creating an RSC/PC clinic. First, there needs to be strong collaboration between multiple disciplines, including the nephrologist, primary caregiver (GP), palliative care physician, social worker and nursing staff. Second, there needs to be awareness of all available palliative care options and support structures in both the private, public and NGO sectors. Third, resources need to be appropriately allocated at primary, secondary and tertiary care levels. This will require discussions with government, hospital management and medical insurance companies.
In a resource-limited setting, upskilling staff at all healthcare levels through education and exposure is essential. A multidisciplinary RSC/PC clinic would serve as a platform to expand training, create awareness and upskill across the care continuum. Establishment of this clinic could be done at a tertiary centre, with primary healthcare physicians rotating through this service and nephrologists supporting community health centres with outreach. Once a care plan is formulated, it should be continued at primary level care and community-based services (home-based carers) should be involved.
Improved communication is essential between all healthcare levels. This can be achieved with a simple booklet for patients (a roadmap), which would detail the advanced care plan (ACP) and current treatments. Electronic health platforms are also becoming increasingly common. Technology needs to be used by health professionals to link peripheral teams to the expertise of the multidisciplinary team. A call-in/Skype system could be used during the multidisciplinary clinic to support primary carers with advice on clinical management and symptoms. Web-based information is a cost-effective tool to assist families in providing care. It could offer information to connect family and relatives to resources and support structures in both the private, public and NGO sectors. A study showed that families caring for a dying patient required the following information: knowledge of the condition, information on medication, patient hygiene and nutritional care, contacts for emergency support and support options for the carer [53].
In a cost-constrained environment, the use of the whole team needs to be optimised, which in the South African setting includes home-based care, community nurses and may involve trained volunteers as a possible innovative solution. The literature also states that the presence and availability of nurses was found to be crucial for volunteers, both for support and to achieve integration through collaboration [54]. Upskilling community-based nurse practitioners to train, monitor and supervise lay counsellors and volunteers (or home-based carers) remains a viable option to care within our communities. Table 3 describes possible solutions for creating a renal supportive care clinic.

Decision making around renal replacement therapy
The overriding ethical principle in paediatrics is the "best interests of the child" standard, where the burden and benefit of an intervention such as RRT are considered [55].
The preferred mode of dialysis in children is peritoneal dialysis as it facilitates normal school, family and play activities [56]. However, each family needs to be assessed in their context to decide which pathway of care would be in their best interest. This assessment is influenced by community infrastructure, family stability, financial resources, existing healthcare systems, compliance record, and quality of life. Methods of communicating information to children at different neurodevelopmental stages and with varying capacity need to be considered.

Management options for children with ESKD [57]
• Pre-emptive kidney transplantation is the ideal treatment for suitable patients and in most cases implies live related kidney transplantation

choice of treatment modality
The choice of treatment modality should be decided upon by considering the following factors [57]: • Contraindications to a specific form of dialysis • Caregiver/parent and patient preference (where applicable) • Quality of life factors of patient and family including siblings • Treating practitioner's advice (including nursing and allied health).

Suitability for renal replacement therapy
In lower-and middle-income countries, psychosocial and economic factors may play a larger role in the selection criteria, especially where families are responsible for the financial payment of treatments [58,59]. If a child is not a suitable RRT candidate, one needs to question the value of continuing dialysis, as it has the potential to prolong dying rather than to improving quality of life [55]. The burden of dialysis can outweigh the benefits of providing treatment and violates the medical maxim of maleficence (do no harm). It is appropriate to withdraw or not to initiate dialysis in children if the dialysis is harmful, is of no benefit or prolongs the dying process [60]. Harm may include psychosocial factors such as institutionalisation, family fragmentation, financial destitution or isolation from culture and community.
RSC/PC should then be considered during a shared decision-making process. However, it is essential that the nuclear family and, if possible, the extended family be involved in the decision-making process. Neonates and infants with ESKD and comorbid conditions have a poorer prognosis and are a challenge from an access and surgical aspect. RSC/PC may often be the care pathway for many patients in this group. Psychosocial support, including anticipatory bereavement, peri-natal advance care planning and memory work, should be integrated into their management plan from the time of diagnosis [61]. Shared decision making is encouraged in conjunction with a multidisciplinary team and, potentially, an appointed neutral parent or family member as in the SONG-Kids initiative (www.songinitiative.org) [55].

Renal transplantation
The goal to provide a renal transplant is in line with the United Nations Convention on the Rights of the Child, that states that children have the right to live and enjoy the highest attainable standard of health, and governments should ensure that children survive and develop healthily [62]. Care of a renal graft requires strictly defined boundaries and dependence on life-long compliance to medication, medical surveillance and significant life-style adaptations [63]. Each transplant centre should have its own pathway of care to ensure a successful transplant. Centre-specific guidelines should advocate that patients and their families be fully informed about diagnosis, prognosis and treatment options.
the role of paediatric palliative care in paediatric renal supportive care Paediatric palliative care (PPC) provides an active approach to reduce disease burden and improve quality of life for both the child and family, through formulation of management plans by a multidisciplinary team. These plans address distressing symptoms in different domains of well-being: physical, spiritual, social, cultural and psychological. Offering early PPC as an integral part of paediatric renal supportive care (RSC) should be done routinely [64,65].
Active palliative care interventions include symptom management, medical and prognostic counselling, facilitation of family meetings and discussion of ethics, advance care planning as well as difficult discussions about end-of-life care. Resuscitation status, terminal care and bereavement support should also be addressed. Families that are receiving RSC often request pain management, clarification of treatment goals and relief from emotional and social distress as well as management of the patient's siblings [66].
RSC requires clinicians, allied health and psychosocial team members with generalist palliative care training to achieve comprehensive care [64]. PPC specialists are rare in lower-and lower-middle-income countries (LLMIC), so it is imperative that the generalist paediatrician (or general practitioner) adopt a palliative care approach so that it is incorporated into the multidisciplinary team [67]. The demand for generalist health professional knowledge and skills in PPC is growing in response to heightened recognition of the benefits of a palliative approach across the neonatal, paediatric and adolescent lifespan. Unfortunately, there is still no government paediatric palliative care policy implementation in South Africa. Paediatric palliative care in South Africa is currently provided by the NGO sector.
Ongoing advocacy from the nephrology community to develop PPC education projects would elevate the quality of RSC. Themes emerging from PPC education projects include [68]:

Specific paediatric requirements for symptom management (table 4)
• In the setting of paediatrics, many drugs may only be available on Section 21 application. In cases where important drugs are not available, advocacy may be required to gain access to these agents.
• Devices for ease of drug administration need to be considered including nasogastric tubes or percutaneous endoscopic gastrostomies (PEGs) inserted for chronic use.
• May need intravenous access for specific symptoms such as tetany.

RSc PRIMARY PALLIAtIVE cARE SKILLS FOR NEPHROLOGY tEAMS: A REcOMMENDED MODEL
• Basic management of pain and symptoms

cONcLUSIONS Proposed research agenda (adults and paediatrics)
• Determine the actual number of patients who require palliative and supportive care due to ESKD. This should be accompanied by a needs assessment of the ESKD patient and their families so as to develop a strategic and comprehensive approach to address the unique needs of our country within our available resources.
• Study the relevance of internationally recognized communication tools in our South African context.
• Develop prognostic measures for our setting given our unique cultural and ethnic diversity. Further research, especially in resource-limited environments with a high burden of disease, should be encouraged.
• Determine outcomes of effective supportive care in different categories of ESKD patients, whether on dialysis or not.
• Compile a multi-centre symptom inventory (e.g. IPOS-Renal) of dialysis patients in both the public and private sectors.
• Aim to understanding the special needs of paediatrics within these frameworks.

Recommendations
• Upskill healthcare workers in essential communication skills.
• Establish the role of medical insurance societies in palliative and supportive care in ESKD.
• Highlight the hidden costs of dialysis that are not often included by some medical insurers.
• Explore better arrangements for the provision of hidden costs, such as packaged care models.
• Acknowledge that multidisciplinary cover should be included in the dialysis costs (for the services of a dietician, psychologist, social worker, access, etc.).
• Basic medical insurance cover: -When to join?
-What is provided?
• Motivate for all the required medication at primary healthcare level.
• Extend the Essential Drugs List.
• In view of the limited access to RRT, we advocate that renal supportive care should be supported by government.
• Fund renal supportive care nurses and their training. Requires occasional assistance, but is able to care for most of his personal needs.

50
Requires considerable assistance and frequent medical care.
Unable to care for self; requires equivalent of institutional or hospital care; disease may be progressing rapidly.

40
Disabled; requires special care and assistance.

30
Severely disabled, hospital admission is indicated although death not imminent.

20
Very sick; hospital admission necessary; active supportive treatment necessary.