Decision Making and Symptom Control in End Stage Kidney Disease

Decision Making and Symptom Control in End Stage Kidney Disease KCAT Primary Care Workshop This workshop was conceived and developed by the Kidney Check Australia Taskforce with particular thanks to A/Prof Robyn Langham and the St George Hospital (Sydney) Renal Palliative Care Section 1 V0914

KCAT supporters The KCAT program is proudly supported by unrestricted educational grants from: KCAT program partners KCAT major sponsor 2

Learning outcomes At the end of this presentation participants will be able to: Describe supportive care as a treatment option for end stage kidney disease (ES Recognise and manage common symptoms and complications in ESKD Outline the components of terminal phase care for the patient with ESKD Integrate the resources available for decision-making support in patients with ESKD in the practice setting 3

What is CKD? Chronic kidney disease is defined as: Glomerular Filtration Rate (GFR) < 60 ml/min/1.73m 2 for 3 months with or without evidence of kidney damage. OR Evidence of kidney damage (with or without decreased GFR) for 3 months: albuminuria haematuria after exclusion of urological causes pathological abnormalities anatomical abnormalities. Chronic Kidney Disease (CKD) Management in General Practice, 2 nd edition. Kidney Health Australia: Melbourne, 2012 4

CKD is a major public health problem 1 in 10 Australian adults has CKD Less than 10% of people with CKD are aware they have the condition You can lose up to 90% of your kidney function before experiencing any symptoms Major independent risk factor for cardiovascular disease Common, harmful & treatable 5 Australian Health Survey, 2013 Chronic Kidney Disease (CKD) Management in General Practice, 2 nd edition. Kidney Health Australia: Melbourne, 2012

Kidney disease in Australia Australians aged 18 years 21,000 Dialysis or transplant Less than 10% of these people are aware they have CKD 54,000 591,000 Stage 4-5 CKD Stage 3 CKD 1,146,000 Stage 1-2 CKD 5+ MILLION AT RISK Hypertension / Diabetes 6 Australian Health Survey 2013; ABS population estimates June 2013; ANZDATA 2012 Report CKD staging is according to the CKD-EPI equation

CKD survival 5 year survival of patients aged 60 years with common cancers compared with CKD 100 95 90 85 80 75 75 % of 5 Year Survival 70 60 50 40 62 60 54 46 44 30 20 10 0 Testicular Breast Bladder Kidney Transplant Rectal Cervical Colon Stage 5 CKD on dialysis Diagnosis Ovarian 7 Nat. Rev Nephrol 2011; 7:578-589

Age and kidneys Relationship between age and kidney function 140 Relationship of egfr to age egfr (ml/min/1.73m 2 ) 120 100 80 60 40 20 2.50% Median 97.50% 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85-90 90+ 8 Age (years) Australasian Creatinine Consensus group. MJA 2007; 187(8): 459-463

Relationship between age and treatment for ESKD Number of dialysed and undialysed cases, by age group at kidney failure onset, 2003-2007. No dialysis or transplant Dialysis or transplant 9 Sparke et al, Am J Kidney Dis, 2012

Who cares for ESKD patients? For elderly individuals with ESKD who cares for them? General practitioner Geriatrician Nephrologist In practice only a small percentage will be referred to a nephrologist 10

Case Study - Jim Background 74 years old Retired farmer Lives at home in a small rural town with his wife of 26 years 11

Case study - Jim Medical History Type 2 diabetes Hypertension Hypercholesterolaemia Ischaemic heart disease L Nephrectomy Medications egfr Albumin creatinine ratio Pulmonary fibrosis Insulin-dependent 5 years Neuropathy, retinopathy, previous osteomyelitis & foot ulcers 15 years 15 years 10 years In 2006 for renal cancer Diltiazem, perindopril, aspirin, simvastatin, atenolol 18 ml/min/1.73 m 2 (20 ml/min/1.73m 2 4 months ago) 28 mg/mmol Needs oxygen at night 12

Case study - Jim Jim has Stage 4 CKD with macroalbuminuria GFR Stage GFR (ml/min/1.73m 2 ) Normal (urine ACR mg/mmol) Male: < 2.5 Female: < 3.5 1 90 Not CKD unless haematuria, structural 2 60-89 3a 45-59 3b 30-44 or pathological abnormalities present Albuminuria Stage Microalbuminuria (urine ACR mg/mmol) Male: 2.5-25 Female: 3.5-35 Macroalbuminuria (urine ACR mg/mmol) Male: > 25 Female: > 35 4 15-29 Jim s results fit here 5 <15 or on dialysis Chronic Kidney Disease (CKD) Management in General Practice, 2 nd edition. Kidney Health Australia: Melbourne, 2012 13

Case study - Question Q1. At this stage in Jim s CKD what are your main management goals? Options: a) Discuss treatment options for end stage kidney disease b) No need for ongoing management c) Refer to Nephrologist 14

Resources Clinical Practice Guidelines for Health Professionals Patients and their families or carers should receive sufficient information and education regarding the nature of ESKD, and the options for the treatment to allow them to make an informed decision about the management of their ESKD CARI guidelines 2010 Acceptance onto Dialysis The cardinal factor for acceptance onto dialysis or continuation of dialysis is whether dialysis is likely to be of benefit. A useful starting point for recommending dialysis is an expectation of survival with a quality of life acceptable to the patient. CARI guidelines 2010 Ethical Considerations 15 Available at www.cari.org.au

Resources Decision Aid for patients Available at www.homedialysis.org.au/healthprofessional/publications/ http://homedialysis.org.au/choosing /my-decision/ 16

Resources Clinical Practice Guidelines for Health Professionals Renal Physicians Association, American Society of Nephrology Guidelines 2010 Available at www.renalmd.org/end- Stage-Renal-Disease Importance of joint decision using a systematic approach to communicate about diagnosis, prognosis, treatment options, and goals or care for patients with ESKD Includes tools to assess for depression, cognitive impairment, and decision-making capacity 17

Case study - Answer a) It s important to discuss the future and ALL the options in full with patients and their family members 3-6 months BEFORE treatment is required and/or urgent. c) Referral to a Nephrologist is recommended when egfr < 30 ml/min/1.73m 2. Appropriate referral not only allows for appropriate management but provides time to discuss treatment options. 18

Effective decision making People need time to evaluate what is important to them, their family and their health. 19

Treatment options for ESKD Dialysis Haemodialysis involves connecting to a haemodialysis machine either at home or hospital, at least 3 times a week for around 5 hours at a time to cleanse the blood. Peritoneal Dialysis involves a tube being permanently inserted into the abdomen. Special fluids are then introduced regularly to draw waste from the body. 20

Treatment options for ESKD Transplantation Kidney transplants come from living or deceased donors. Living donors can be relatives as well as partners and close friends. Waits of 4-7 years for a deceased donor organ are not uncommon. A transplant from a living donor can be performed before dialysis is started (pre-emptive transplantation). Pre-emptive transplants make up 11% of all transplant operations in Australia. 21

Treatment options for ESKD Non-dialysis care Some people decide not to have dialysis or a kidney transplant, and instead choose a non-dialysis treatment, also known as supportive or conservative care. This choice lets kidney failure run its natural course and focuses on treating symptoms. Non-dialysis treatment aims to preserve kidney function for as long as possible through dietary management and medications, but cannot stop the decline in kidney function. 22 Further information on treatment options available at www.kidney.org.au or by calling Kidney Health Information Service on 1800 454 363

Dialysis Transplant Non-Dialysis Treatment Treatment done at home or in a dialysis centre using a machine or special dialysis fluid. An operation to insert a transplanted kidney. Continue to see a kidney specialist to manage symptoms, diet & medication. Suitability Most people with ESKD are suitable, unless they have serious illnesses affecting other body systems. Typically suited to younger patients without serious health issues besides kidney disease. Suitable for all patients - usually chosen if dialysis would result in poor quality of life or life expectancy. Life and work Home dialysis are more flexible than others. Resume normal activities 3 6 months after transplant Health will deteriorate, life expectancy will decrease Diet and fluids Some restrictions - depends on type of dialysis. No restrictions, but it is important to eat healthily. Medications may increase appetite. Some restrictions. Travel and holidays Can travel more easily with some types of dialysis. Others need planning, and travel may not always be possible. Travel possible - need to discuss safety and provision of ongoing treatment with doctor. Travel possible - need to discuss safety and provision of ongoing treatment with doctor Health Health and wellbeing is less than that of people with normal kidney function or a transplant, but better than before starting dialysis. Medications needed to help the body accept the new kidney. Transplant operations can have complications. Manage symptoms through diet and medication. Life expectancy will be decreased. 23

CKD pathway Primary Care CKD Management Nephrology Unit CKD Management Palliative Care Screen patients for CKD risk factors CKD diagnosis / progression Referral to Nephrologist CKD risk factor reduction, CKD management CKD 3/4 Diagnosis & treatment, treat comorbidities & slow progression CKD progression CKD 3/4 Estimate progression, treat complications, educate patient & family about all treatment options CKD 5 Dialysis, transplantation, or non-dialysis care Palliative care Manage complications of CKD 24

Decision making It is not a static process and is not limited to a single point in time Peritoneal dialysis Home dialysis Transplant Non dialysis Nocturnal dialysis Haemodialysis 25

Case study - Question Imagine that you have recently learned that you have stage 4 CKD and are likely to progress to ESKD within the next 3 months. Use the My Choice Decision Aid to consider the pros and cons for each of the management options (dialysis, transplant, nondialysis). Q2. What factors in your own situation might change your management choice? 26

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Treatment options what is important for patients? Lifestyle and QOL issues are very important for patients: - Time of day dialysis is available - Number of visits to hospital/centre for dialysis per week - Difficulty and cost of transport to dialysis - Travel and holiday options Patients approaching ESKD may be willing to trade considerable life expectancy to reduce the burden and restrictions imposed by dialysis 28 Morton RL et al. CMAJ 2012

Case study - Jim You discuss each treatment option with Jim and his wife. You feel that Jim has a good understanding of the options available. Q3. Discuss what you could do if Jim was struggling with the decision about treatment. 29

Case study - Question Jim makes an appointment to see you without his wife present. He makes it clear that he does not want to be hooked up to machines; he wants to be at home. He has told his wife and children, but they are not happy with this decision. Q4. Where do things stand legally when a patient refuses dialysis treatment, or chooses to stop dialysis treatment? 30

Legal issues concerns about withholding and withdrawal of dialysis Unless clearly incompetent, patients have an absolute legal and moral right to consent to, withdraw from or refuse any treatment (including dialysis) without having any obligation to explain their decision. Doctors have a responsibility to: ensure that the patient's decision is fully informed seek to engage the patient in a discussion of their options and reasons continue to support the patient in whatever choices the patient makes If a doctor has concerns about the patient' s competence, or about the legal implications for the doctor of the patient's decision, then they should: seek another opinion discuss with colleagues in the practice (& the patient's nephrologist if they have one), and/or obtain advice from their medical indemnity provider 31

Case study - Question Q5. How can you help Jim s family understand Jim s decision for non-dialysis care? 32

Survival Dialysis versus a non-dialysis pathway An Australasian study showed that elderly ESKD patients who commence dialysis have considerable mortality. 1-year survival of 77%, 2-year survival of 59% and 3year survival of 45% Survival of elderly ESKD patients on a non-dialysis pathway is difficult to estimate because of lack of data. Survival without dialysis may be between 9-22 months. 33 Foote C, Ninomiya T, Gallagher M et al. NDT 2012

Survival and dialysis Survival of patients aged 75 and 85 years initiating dialysis in Australasia (2002-2005) compared with survival of 75- and 80-yearolds from the general Australian population 34 Australia s Health 2008. Cat. no. AUS 99. Canberra: AIHW, 2008. [Cited 10 Feb 2011] www.aihw.gov.au/ Rosemary Masterson and Celine Foote. Perspectives The Issue Surrounding End-Stage Kidney Disease and Dialysis in the Elderly and Those with Co-morbidities. ANZSN Renal Supportive Care Guidelines 2013. Nephrology 18 (2013) 401 454

Survival information for patients 18 year observational study 844 patients 696 RRT 155 non-dialysis conservative care Survival less in nondialysis than in RRT (21.2 vs 67.1 months, p<0.001) But, there are other issues to consider... 35 Chandna SM. et al. NDT 2010

Survival is related to age 36 Chandna SM. et al. NDT 2010

Survival is related to co-morbidities 37 Chandna SM. et al. NDT 2010

Quality of life and survival Single-centre prospective study; 170 patients with progressive stage 4 or 5 CKD Minimum 30 months follow-up Dialysed patients survived 13 months longer (after controlling for comorbidity, Karnofsky Performance Scale score, age, SF-36, and propensity) Most of the increase is absorbed by dialysis days Quality of life measures did not improve after dialysis initiation Haemodialysis 1200 Life satisfaction decreased with dialysis Conservative care 1000 Days Quality of life remained stable with conservative care 1400 800 600 400 200 0 Survival Time 38 Survival Time minus dialysis days Da Silva-Gane et al, Clin J Am Soc Nephrol, 2012

Case study - Jim Jim and his family visit the local dialysis centre and meet with the renal team and community palliative care team. After a series of conferences Jim and his family agree the best pathway is for Jim to have supportive care at home, with involvement of the local GP and palliative care team What to expect now 39

Non-dialysis pathway Palliative Care Nephrology Unit CKD Management Primary Care CKD Management Screen patients for CKD risk factors CKD 3/4 Diagnosis & treatment, treat comorbidities & slow progression CKD diagnosis / progression CKD progression Referral to Nephrologist CKD risk factor reduction, CKD Management CKD 3/4 Estimate progression, treat complications, educate patient and family about all options: prepare for conservative care Palliative Care Manage complications of CKD 40 CKD 5 Treat complications, symptom burden, transition to PC

Trajectory of illness of advanced CKD Still trying to treat the underlying disease Functional decline months to years Episodes of acute (serious) reversible complications Level of Function High Low 41 Time Death Swidler, ASN curriculum

Case study - Jim Jim is seen a few months later and is complaining of the following issues Surges of neuropathic pain in his feet Ongoing breathlessness and nausea Severe itch Difficulty sleeping and more recently A sensation of being unable to keep his legs still Q6. Jim s family believe that Jim would not be experiencing these symptoms if he was on dialysis. a) True b) False 42

False... Symptoms in ESKD managed with and without dialysis Dialysis Non-dialysis Fatigue/tiredness 71% 75% Pruritus 55% 74% Constipation 53% Anorexia 49% 47% Pain 47% 53% Sleep disturbance 44% 42% Anxiety 38% Dyspnoea 35% Nausea 33% Restless legs 30% 48% Depression 27% 40% 43 61% Murtagh F et al, J Pall Med 2007; Adv Chr Kidney Dis 2007

Symptom assessment Several symptom inventory tools validated for ESKD Allow patients and clinicians to focus on symptoms causing most difficulty Simple example is the Palliative care Outcome Scale Symptoms (POS-S) Renal instrument - Validated for renal patients - Symptom scores nil overwhelming - www.pos-pal.org 44

Symptom management 45 Control of pain Control of symptoms related to anaemia Treatment of pruritus Treatment of nausea Treatment of fluid retention Psychosocial End of life care

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Case study - Jim You see Jim for his six-monthly review. His egfr has decreased to 10 ml/min/1.73m2 (previously 18 ml/min/1.73m2) Jim has Stage 5 CKD with macroalbuminuria Albuminuria Stage 47 GFR GFR Stage (ml/min/1.73m2) 1 90 2 60-89 3a 45-59 3b 30-44 4 15-29 5 <15 or on dialysis Normal (urine ACR mg/mmol) Male: < 2.5 Female: < 3.5 Microalbuminuria Macroalbuminuria (urine ACR (urine ACR mg/mmol) mg/mmol) Male: 2.5-25 Male: > 25 Female: 3.5-35 Female: > 35 Not CKD unless haematuria, structural or pathological abnormalities present Jim s results fit here Chronic Kidney Disease (CKD) Management in General Practice, 2nd edition. Kidney Health Australia: Melbourne, 2012

Case study - Jim The rate at which his kidney function has declined allows a rough prediction kidney function is likely not to survive longer than a year. 30 Predicted decline of GFR 20 15 10 5 0 48 1 2 3 4 5

Case study - Question Using the POS-S Renal tool you identify that Jim is having the most difficulty with pain control. Q7. What are the recommended steps for managing pain for patients undergoing non-dialysis treatment for ESKD? 49

Pain in ESKD Common in ESKD with and without dialysis Variety of etiologies - Musculoskeletal - Neuropathic (diabetic neuropathy) - Ischaemic (causes nociceptive, visceral, and neuropathic pains) Multidisciplinary approach consisting of nephrology, pain medicine, palliative care, general practice, nursing and other relevant disciplines is advised 50

Pain management 1. Important to try to determine a cause for the pain 2. Mild or moderate pain - paracetamol or tramadol Analgesics not as effective for neuropathic pain Avoid NSAIDS and COX-2 inhibitors - can adversely affect kidney function 3. Moderate to severe pain Kidney failure has implications for opioid choice - many are renally excreted Opioid choice and dose/interval individualised to each patient - Hydromorphone use is controversial as its metabolite can accumulate but evidence in humans in lacking - Fentanyl safest as its renally excreted metabolites are inactive - Morphine and oxycodone have active metabolites which accumulate and can be toxic 51

Alternatives for severe neuropathic pain Buprenorphine (Norspan) patches Fentanyl (Durogesic) patch Ketamine * Methadone* * Best used under the supervision of the Pain or Palliative Care teams More information on the use of drugs in patients with kidney impairment can be found in The Renal Drug Reference Guide 52

Anaemia Symptoms are common in ESKD Prevalence increases as kidney function worsens Can contribute to symptoms of fatigue, depression and sleep disturbances Management: - Other causes of anaemia should be considered and excluded PBS criteria EPO only reimbursed after Hb <100g/L Need to have Nephrologist endorsement to start Ensure not iron deficient All respond need to dose titrate Most self administer SC every 1, 2 or 4wks (depending on EPO formulation) - All will need extra iron (oral or i.v.) 53

Pruritus Common in ESKD with and without dialysis Various etiologies suggested: 54 inadequate dialysis secondary hyperparathyroidism dry skin divalent ion accumulation and precipitation in skin mast cell dysregulation abnormal cutaneous innervation aluminum toxicity elevated serum histamine elevated serum serotonin substance P altered immune function

Pruritus management Exclude potential other causes (e.g. allergies, scabies) Pharmacological management - Gabapentin 100mg after dialysis (not PBS approved) - If on supportive pathway (egfr<15) then start 100mg every 2nd night - Evening primrose oil (1 capsule bd) - Thalidomide (100mg nocte) - UV B Therapy Skin moisturisers advised - Capsaicin cream (although patients may not tolerate the initial burning sensation) 55

Restless legs syndrome Common in ESKD with and without dialysis May increase in severity as death approaches Affects quality of life through sleep disturbance Home therapies such as massage, warm baths, warm/cool compresses, relaxation techniques may be beneficial 56

Restless legs syndrome Pharmacological management - Iron replacement therapy - Gabapentin 100mg after dialysis* - If on supportive pathway (egfr<15) then start 100mg every 2nd night - Dopaminergic agents or dopamine agonists (e.g. levodopa, Ropinirole) - Benzodiazepines If the patient is troubled by both uraemic pruritus and restless legs syndrome commence Gabapentin as it has been shown to have efficacy in both symptoms. It is also efficacious for painful diabetic peripheral neuropathy. *Gabapentin is PBS indicated for refractory neuropathic pain 57

Dyspnoea Approaches 80% in final days Effectively controlled in < 50% in cases Multifactorial may include cardiac disease, respiratory disease, fluid overload, anaemia Pneumonia is a common final event Treatment requires urgency: - often rapid progression - severe distress - often only hours before dying 58

Management of dyspnoea Nonpharmacological Pharmacological Pharmacological detail Calm reassurance Oxygen Fan Sedatives Conscious (lorazepam 0.5mg SL bd) Unconscious (midazolam) Sitting upright Opioids Commence with small doses of hydromorphone 0.25-0.5mg qid and carefully titrate to response Open window Antisecretory agents Scopolamine, glycopyrrolate 59

Nausea Common and often multifactorial in origin Significantly affects quality of life and nutritional intake Metoclopramide hydrochloride as first line Haloperidol recommended (start with dose at lower end of effective range e.g. 0.5mg bd) Levomepromazine can be used if symptoms persist, but it is more sedating Cyclizine not recommended as may cause hypotension or arrhythmia in patients with cardiac comorbidities; use only under palliative specialist supervision 60

Case study - Jim For Jim the following treatment and dosing was considered on his non dialysis pathway Gabapentin for neuropathic pain, pruritus and restless leg syndrome (may also help with sleep?) Titrate up by 100mg increments according to tolerability and response - If egfr >50 commence 100mg tds - If egfr 30-49 commence 100mg nocte 100mg bd and titrate up - If egfr 15-29 commence 100mg nocte and titrate - If egfr < 15 commence 100mg every second night and titrate up 61

Case study - Jim For Jim s nausea Metoclopramide HCl 10mg half hour before meals - Also helps early satiety and gastroparesis related to diabetes Haloperidol was used - Elimination is via bile, faeces and urine; If egfr < 10 or dialysis begin with low end of dose range; In elderly use low doses to avoid extrapyramidal reactions; Increased risk of sedation in renal failure and 50% of normal dose is recommended - Minimal commencing dose - 0.5 mg. - Typical commencing doses for: * Nausea - 0.5 mg bd 62 * Delirium - 1mg bd Ondansetron not recommended due to it being expensive and constipating.

Case study - Jim For Jim s breathlessness and possibly sleep Lorazepam was used - Elimination is renal (88%) and faecal (7%) - If egfr <10ml/min/1.73m2 or dialysis begin with low end of dose range and titrate according to response - CNS adverse effects more pronounced in patients with renal impairment - Minimal commencing dose - 0.5 mg-1mg bd (sublingual or oral) - Alternatives small dose of hydromorphone 0.25-0.5mg qid Note: For terminal secretions Glycopyrrolate 0.4mg-0.8mg SL Q 1-2 hourly What other management issues may arise? 63

Fluid retention Pathway of correct hydration often narrow Easily get too dry Easily get too wet Essential to avoid pulmonary oedema Utilise Heart failure regimen Daily weight Fixed sensible fluid volume input Vary frusemide dosage to maintain stable weight Ideal weight is when there is mild ankle oedema at end of day Accept that the ideal weight may be one where GFR is somewhat compromised 64

Psychosocial issues Depression and/or anxiety is common throughout CKD and can affect up to 40% of conservatively managed patients May be difficult to formally assess as physical symptoms of ESKD are identical to diagnostic criteria When in doubt, seek a psychiatry review Several SSRIs are safe to use without dose adjustment (e.g. Citalopram, Fluoxetine, Sertraline) For panic attacks consider Benzodiazepines 65

Terminal phase care: how to ensure comfort Communication Anticipating symptoms, proactive response - Pain (generally only if a pre-existing problem) Nausea Restlessness, confusion Dyspnoea fluid balance, pneumonia Pruritus Myoclonus, twitching Communication Anticipating need for non-oral medication routes Communication 66

Delirium in terminal phase care Common: 80 90% in last few weeks Almost always multifactorial; illness, medications May rapidly worsen, with paranoia and agitation Very distressing for all involved Not likely to be reversible in last few days of life, such as after withdrawing from dialysis (this is d/t uraemic encephalopathy) Main intervention is effective sedation If conscious haloperidol 1mg bd sci and 1-2mg prn If unconscious - midazolam Subcutaneous route 2.5 mg - 5 mg q 4 hours ; about 1/3 as potent as IV route but IV is complicated and impractical in reality 67

Communication in terminal phase care: issues regarding sedation for delirium Delirium not reversible; ongoing physiologic decline Once effectively sedated, will not likely awaken again Medications not hastening process, but ensuring comfort Encourage ongoing communication by family, including private time alone with patient Be cautious in presenting non-choices as choices there are no other realistic options but aggressive sedation in trying to settle a restless, agitated, delirious person who is imminently dying 68

Case study - Question Q8. How have your thoughts on ESKD treatment decision-making changed as a result of this workshop? 69

Dying with Dignity What Patients Want? Meanings of dying with dignity from perspective of patients, families and Health Professionals (HPs) 70 Guo & Jacelon Palliative Medicine 2014

Recommendations It is both advisable and appropriate to initiate ACP with an ESRD patient 1. Initiation ideally by the Nephrologist with other team members e.g. social worker, dialysis nurse Where possible, ACP discussions should include the patient s family. The content of the discussion and any documentation should include: 2. 3. 4. 71 Information on the nature of ESRD, prognosis and quality of life. Selecting a substitute decision maker Exploring expectations, goals of care and values An indication as to what circumstances the patient would wish that dialysis and all other active treatment cease and a purely palliative approach commence. This process may continue over many conversations ACP discussions should be documented and universally available to relevant parties.

Advanced Care Planning Advance Care Planning should be initiated in i. all competent patients aged 65 years and above, and ii. all competent patients, irrespective of age, who fulfil one or more of the following criteria : The Nephrologist would not be surprised if the patient were to die in the next 12 months. Two or more significant co-morbidities Poor functional status Chronic malnutrition. Poor quality of life 72

Key points Treatment decision making process is ongoing Need to respect individual informed decisions Tools are available to help decision-making process Well managed non-dialysis pathway an attractive option particularly when co-morbidities present GPs play an important role in symptom management Communication critical to ensuring comfort in terminal phase 73

Resources CKD Management in General Practice 2012 Guidelines booklet Available at 74 www.kcat.org.au

Resources RACGP Advanced Care Planning Available at 75 http://www.racgp.org.au/yourpractice/business/tools/support/acp/

Resources Kidney Health Information Service Free call information service for people living with / affected by kidney disease 76

Resources CKD patient fact sheets Available along with more kidney health fact sheets at www.kidney.org.au > For Patients > Health Fact Sheets 77

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