Blog #8 – Kidney Supportive Care – my experience in Tasmania, Australia

After I left Pittsburgh, USA I travelled a long distance to the beautiful island state of Tasmania to start learning more about models of Kidney Supportive Care in Australia.

Wineglass Bay, Freycinet National Park, Tasmania

There were lots of these guys jumping around

In certain locations, Australia has been very progressive in the development and promotion of Kidney Supportive Care services. I came to Tasmania on the recommendation from Professor Mark Brown, one of the pioneers in KSC based in Sydney. He recommended that I meet Professor Rajesh Raj and colleagues as Rajesh is a nephrologist with an interest in KSC.

In this blog I’ll discuss the following:

• How renal services operate in Tasmania

• Kidney Supportive Care in Tasmania

• A proposed Tasmanian state-wide model for Kidney Supportive Care

Renal services in Tasmania - operation and funding:

Tasmania lies 150 miles to the south of the Australian mainland. The state encompasses the main island and thousands of surrounding small islands. The capital city is Hobart, which lies in the south of Tasmania and the other city is Launceston which is in the north. The state population is just over 573,000 and a significant proportion of people live in rural areas. As a consequence of the geography and poor road connections, travel to a hospital or clinic can often be difficult and time-consuming for those in rural areas.

With regard to how renal services are organised, the island is divided into the North (population of Launceston and north Tasmania) and the south (population of Hobart and south Tasmania). Up to 50% of patients with Kidney Failure (eGFR<15ml/min) are not seen by nephrologists in Tasmania. This is due to a combination of factors – a limited number of nephrologists, patients aren’t always referred, patients can’t or don’t wish to travel to a clinic or they don’t wish to receive specialist kidney care for cultural, pragmatic or other personal reasons. This means that 50% of patients with kidney failure are receiving conservative kidney management (CKM), but often without the specialist support of a renal team. Although the ratio of patients on CKM to dialysis may be as high as 2:1, the funding of staffing is not proportionate and there has not been considerable allocation of spending into kidney supportive care services including conservative kidney management.

Kidney Supportive care in Hobart and South Tasmania:

I stayed in the pretty city of Hobart where I had the pleasure of spending time with Dr Lee Skeat (consultant nephrologist), Dr Kate Greenhill (Consultant in Palliative Care with a background in General Practice), Sharonne Hennessy ( KSC nurse with a background in Palliative Care and in renal patient education) and Dr Sarah Pascoe (Palliative Medicine registrar with an interest in Kidney Supportive Care).

This team are all very enthusiastic about developing KSC services, but are currently faced with the challenge of not having enough dedicated resource to fully meet the needs of their patients. They have 20 dialysis chairs in Hobart for a population of approximately 250,000. Although 50% of people with kidney failure are not receiving dialysis, they only have one part-time KSC nurse, Sharonne, who works 3 days per week. Sharonne tries to see all CKM and dialysis patients with supportive care needs. Referrals come from primary care and from the wider renal team. All dialysis patients are asked to complete an IPOS-renal every 6 months to highlight those who need a KSC referral. Most of the patients complete the IPOS-renal, but some have complained they don’t like it and don’t always fill it in.

If symptoms are difficult, Sharonne discusses the situation with the patient’s nephrologist or refers to Dr Greenhill and other members of the palliative care team. However, there is no funding to allow dedicated time for palliative care to work alongside the renal team. Therefore advice is given, or the patient is seen according to time and priority of need amongst all the other cancer and non-cancer referrals to the palliative care team.

Medical time for KSC:

Dr Skeat and her other consultant colleagues have no dedicated time for KSC and try to incorporate the principles of KSC into their routine nephrology clinics and dialysis reviews, referring patients to Sharonne for support with Advance Care Planning, psychosocial support and symptom control. Lee has an interest in Kidney Supportive Care but in order to provide a dedicated clinic, some other part of her workload would need to be dropped and absorbed by her colleagues.

Sharonne Hennessy, Dr Kate Greenhill, Dr Sarah Pascoe.

Medical training in KSC:

The Royal Australasian College of Physicians (RACP) curriculum for Renal Trainees consists of a 3 year training programme. In the opening overview of the speciality curriculum, a statement is made about the importance of Kidney Supportive Care. It also has a section on the competencies which must be learned and assessed on Conservative Kidney Management. In theory, this means that all renal trainees in Australia and New Zealand should get exposure to at least a CKM service for training needs to be met. The trainees in Hobart attend the nurse-led CKM clinics so are therefore getting exposure to that component of Kidney Supportive Care. Furthermore, there is a Clinical Fellowship in Palliative Medicine, which is recognised formally by the RACP. This gives an avenue for more in-depth training to renal trainees who are interested in developing their palliative and end of life care knowledge and skills further.

Dr Sarah Pascoe is a Palliative Medicine trainee who is interested in kidney supportive care. The Palliative Medicine training programme in Australia is 3 years and within this, there is flexibility to do a research or audit project and spend time in a specific area so that knowledge and skills in that specific area can be enhanced. Sarah is hoping to spend a period of time immersed in kidney supportive care to allow her to further develop her interest. The flexibility to allow specialist interests to be developed is not always available in Palliative Medicine training in the UK.

Kidney Supportive Care in Launceston and North Tasmania

Professor Rajesh Raj and myself at Launceston General Hospital

Medical Lead - Professor Rajesh Raj (Associate Professor of Nephrology)

Professor Rajesh Raj is one of the first nephrologists in Australia to have developed a renal-led Kidney Supportive Care service. He moved from India to take up his consultant post in Launceston in 2009. His interest in KSC started in India where he experienced patients being denied dialysis due to lack of availability or lack of money (choice-restricted CKM). When he came to Launceston, although dialysis was available to those who wished it, he saw a need for better supportive care for both dialysis patients and patients who were being managed conservatively. He was included in a focus group of Australian physicians who met on the sidelines of the annual nephrology conference and were interested in improving KSC. This was chaired by Dr Frank Brennan (Palliative Medicine consultant from Sydney)

In 2011 Rajesh established the Renal Supportive Care (RSC) service at Launceston General Hospital and spent time on sabbaticals learning more about KSC services and research in this area from Professor Fliss Murtagh at Kings College London and from Professor Sara Davison, University of Alberta, Canada. He then went on to complete a PhD studying outcomes in the elderly with advanced kidney failure. The service is currently still called the Renal Supportive Care (RSC) service which is synonymous with Kidney Supportive Care.

Launceston General Hospital

Development of the RSC service in North Tasmania:

Initially the KSC team involved Rajesh, a KSC supportive care nurse called Bridget Brown and a social worker, Sara Challenor. Bridget had previously been a renal nurse and involved in patient education around kidney treatment decisions. As this dovetails well into KSC she was keen to move into this area of renal care. Dedicated time was also provided by Sara to the service. In a similar way to the NHS Tayside model, the service initially started as a clinic for patients who were receiving conservative kidney management (CKM) but quickly expanded to also provide supportive care to dialysis patients. Although the intention was to provide a supportive care consultation to all dialysis patients, there was neither time nor resource to provide this routinely. However, the IPOS-renal is offered to all dialysis patients prior to their dialysis clinic review. There is variation between consultants and dialysis centre regarding how often this is completed. About 50% of all dialysis patients complete the assessment. Dialysis patients who have supportive care needs may also be highlighted at an MDT by the dialysis nurses and consultants.

Rajesh provides general nephrology / Advanced Kidney care clinics which are separate from his KSC clinics. During the KSC clinics, the focus is on symptom control and advance care planning, as oppose to routine kidney care. Bridget has now moved onto Adelaide and so another KSC nurse has started in this role who has come with a background of palliative care experience. Bridget continues to work with Rajesh remotely as he is supervising her PhD on an aspect of KSC.

Rajesh provides CKM clinics with another KSC nurse, Ailsa Jones, who provides much of the work in the satellite areas in the North of Tasmania. Her main role was CKD education but due to her significant interest in KSC, now includes this in her job role. She provides a CKM clinic alongside Rajesh in the town of Devenport and provides KSC for the patients at the satellite dialysis unit in the town of Burnie. Ailsa has displayed posters in these clinical areas advertising Advance Care Planning and encouraging patients to engage in these conversations. 100% of the dialysis patients in Burnie currently have an ACP. Ailsa provides home visits for both aspects of her job (education and KSC) and uses telehealth when this is a joint consultation with Rajesh. This means that she can be with the patient whilst Rajesh is providing consultant input virtually. This works well given the large geography that is covered.

If patients are dying at home, the KSC nurses provide support along with the palliative care services, general practitioners, community nurses and community rapid response services.

Both KSC nurses for north Tasmania have CKD education and Kidney Supportive Care as part of their role.

Palliative Care input

Palliative Care does not have dedicated resource within the KSC model for Launceston. In a similar way to Hobart, they will see patients in the hospital and community who are referred, but patients may need to wait according to the priority of need alongside the other cancer and non-cancer patients referred to palliative care.

Penguin beach - north Tasmania

A Tasmanian State-wide Renal Supportive Care Model

Rajesh, his colleagues and others across Tasmania are currently developing a consensus paper on Kidney Supportive Care to take to the Tasmanian Department of Health. This is to highlight the need for a standard level of care to be delivered across Tasmania . This is a proposal built on current existing clinical services.

Rajesh allowed me to look at the draft proposal as a helpful document for developing ideas of how to improve consistent KSC models across Scotland and the UK. Key principles within the draft include:

Key Principles:

1. Name of the model

Renal Supportive Care or Kidney Supportive Care? Although the services in Tasmania are currently called ‘Renal Supportive Care’ there is discussion that this should be changed to Kidney Supportive care as this would be in keeping with many other Australian and international models, may be more clear to those who struggle with health literacy and is in keeping with the recently published ISN paper ‘Conservative kidney management and kidney supportive care: core components of integrated care for people with kidney failure’. As mentioned in recent blogs, this paper highlights the need for kidney supportive care at a global level and provides consensus definitions.

2. Aim of the model

Kidney Supportive Care is a multi-disciplinary, patient-centred model of care which integrates renal medicine and palliative care principles to allow a patient to receive routine management of kidney disease as well as support with treatment decision making, symptom management, educational, psychological and social support , advance care planning and end of life care. These issues are often not addressed by the ‘disease-centred’ model of routine kidney care. It is also difficult to address both routine kidney care and supportive care issues in a normal nephrology clinic which normally lasts approximately 20 minutes.

3. Target Population

The KSC service will aim to ensure that the following patients receive routine kidney care and have their supportive care concerns addressed:

1. Those requiring support with treatment decision making

2. Those receiving Conservative Kidney Management (CKM)

3. Those who have psychosocial or physical symptoms on kidney replacement therapy (KRT) including transplant patients

4. Those considering withdrawal from dialysis

5. Those patients who require support when they are dying

4. Leadership for KSC service

The leadership of the service should ideally come from the renal team. Staff should be drawn from the renal team, but have additional training in palliative care and KSC. Core members of the KSC team should include a KSC nurse, a KSC nephrologist with an interest in KSC or training in palliative care, a social worker, a dietician, a pharmacist and a psychologist.

Additional members of the team who may be required include a palliative care nurse or physician, a trainee registrar (renal / palliative care or GP), an occupational therapist, a physiotherapist and a podiatrist. Close relationships and integrated working with palliative care is important.

5. Types of consultations:

The KSC team should have the scope to see patients in hospital, in clinic, or in a community setting by face-to-face visits or telehealth. New patients should receive 1-hour consultation and return patients should receive a 30 minute consultation.

6. Multiprofessional meetings:

These should be held routinely with the core members of the KSC team, the wider renal team and the other members of the team who have regular input such as palliative care.

7. Patient Reported Outcome Measures (PROM) and Advance Care Planning:

All patients seen by the KSC service should have the IPOS-renal recorded at all consultations. It should also be offered at regular intervals to all dialysis / transplant and AKC patients to highlight need for review.

Quality of Life tool (EQ-5D-5L) and Functional Status should be measured at 6 monthly intervals on all renal patients. All ACP conversations should be documented electronically and essential ACP information and PROM scores should be uploaded onto the patient’s digital health record. ACP alerts (ie resuscitation status) should be included on the record.

8. Key Performance Indicators (KPIs) and measurement of effectiveness:

Suggestions for KPIs include:

1. patients who have chosen CKM should be seen by the KSC team at least one month prior to death

2. An agreed percentage of dialysis patients should be seen if they are withdrawing from dialysis, have difficult symptoms or have other supportive care issues.

3. An agreed percentage of patients seen by the KSC team should have an ACP documented on the electronic healthcare record.

Suggestions for measurement of effectiveness include:

1. improvement in the patient’s symptoms, quality of life and performance status using the tools described.

2. Positive patient and carer satisfaction scores.

My reflections about KSC services from my experience in Tasmania:

My reflections from observing different KSC services are developing common themes and I will summarise these at the end of my sabbatical period. My reflections at the end of my time in Tasmania include the following:

1. Leadership:

Leadership and resource for Kidney Supportive Care services needs to come from the renal team. However, for this to work effectively, there must be engagement from all renal consultants and nurses, particularly the clinical lead of the department and the nurse manager, as well as from members of the wider multiprofessional team.

There needs to be acknowledgment and acceptance from the renal department leads that dedicated time and resource is required to provide an acceptable standard of supportive care to kidney patients. This standard may not be reached if it is just added onto a routine renal clinic or dialysis consultation.

2. Multiprofessional working:

A multiprofessional team is required to provide an effective service which should include a KSC nurse, a KSC consultant, a social worker, a pharmacist, dietician and a palliative care physician as the core team. The team may also be more effective if it also includes professionals such as those who are skilled in spiritual care and / or psychology, occupational therapy, physiotherapy and Clinical Frailty.

3. Interface between Primary Care and Secondary Care:

As much of the supportive care is being delivered in the community, ideally key members of the primary care team should be included in the multiprofessional team. However, due to logistics and workload this may not be possible. It is therefore important that key information from electronic health records can be viewed by all professionals involved in the care of a patient and that there is scope for members of the KSC team to provide community visits and telehealth for those patients who are unable to attend a clinic. There should also be regular education on KSC for community healthcare professionals.

4. Political and Medical Director engagement:

For Kidney Supportive Care to be considered a priority in the care of patients with kidney disease, engagement with leaders within a health board or at a hospital executive level should occur. Politicians and policy makers within a country should also be included in discussions so that an acceptable standard of care should be agreed, resourced and then delivered for all patients with kidney supportive care needs in that country.

5. Training:

The curriculum for renal trainees should include kidney supportive care and it should be mandatory that renal trainees attend KSC clinics, in the same way as they must attend general nephrology, advanced kidney care and transplant clinics.

Clinical Fellowships in Kidney Supportive Care should be available for renal and palliative care trainees who wish to develop more expertise in this area.

Clinical Fellowships in Palliative Medicine should be available for senior trainees from cancer and non-cancer specialities as many of the patients cared for by these trainees have palliative and end of life care needs.

6. Outcome measures and IT support:

All patients seen by KSC services should have outcomes measured regularly to assess symptoms, quality of life and frailty or performance status. Advance Care Planning conversations should be documented. All the PROMs and ACP information should be uploaded electronically onto a healthcare record and IT support needs to be available to set systems up to do this, to upload the information and to analyse it regularly so that effectiveness can be assessed and service delivery planned.

Cradle Mountain with my husband who joined me for a couple of weeks - it was freezing!