Decision making and symptom control in kidney failure

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Not to be reproduced or copied without permission from Kidney Health Australia

Decision making and symptom control

in kidney failure

Primary Care Education WorkshopThis module was conceived and developed by PEAK*

Presented by: Dr Stephen May

V0621

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Housekeeping

[email protected]

Housekeeping

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Acknowledgements:

Thanks to the ‘Primary Care Education Advisory

Committee for Kidney Health Australia’ (PEAK) who

has developed and reviewed this education.

Thanks to our volunteer presenters!

Thanks to our webinar sponsors

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Learning outcomes

1. Describe comprehensive conservative care as a treatment option for Kidney Failure

2. Recognise and manage common symptoms and complications in Kidney Failure

3. Discuss end-of-life in the setting of Kidney Failure

Learning aim

Provide the tools for management of all stages of Chronic Kidney disease (CKD) in a primary care setting.

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What is CKD?

Chronic Kidney Disease (CKD) Management in Primary Care, 4th edition. Kidney Health Australia: Melbourne, 2020 p7

CKD is defined as…

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How prevalent is CKD in

Australian adults?

a) 1 in 5

b) 1 in 10

c) 1 in 20

d) 1 in 100

Question:

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How prevalent is CKD in

Australian adults?

a) 1 in 5

b) 1 in 10

c) 1 in 20

d) 1 in 100

Answer:

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CKD is a major public health problem

1.Australia Bureau of Statistics. Australian Health Survey: Biomedical Results for Chronic Diseases,2011‐12. ABS, Canberra; 2013

2. Chronic Kidney Disease (CKD) Management in Primary Care, 4th edition. Kidney Health Australia: Melbourne, 2020

1 in 10 Australian adults has

CKD1

Less than 10% of people with

CKD are aware they have the

condition2 2

Major independent risk factor for cardiovascular

disease2

common, harmful & treatable

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Nat. Rev Nephrol 2011; 7:578-589

95

85

75 75

6260

54

4644

0

10

20

30

40

50

60

70

80

90

100

Testicular Breast Bladder KidneyTransplant

Rectal Cervical Colon Stage 5 CKDon dialysis

Ovarian

% o

f 5 Y

ear

Su

rviv

al

Diagnosis

CKD survival5-year survival of patients aged 60 years with common cancers compared with CKD

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20-24

Age (years)

20

40

60

80

100

120

140

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+

eG

FR

(mL

/min

/1.7

3m

2)

2.50%

Median

97.50%

Australasian Creatinine Consensus group. MJA 2007; 187(8): 459-463

Relationship: age & kidney functionGFR declines by 5-8mL/min/1.73m2 each decade

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Age and kidney failure

Number of KRT and non-KRT cases, by age group at kidney failure

onset, 2003-2007

Sparke et al, Am J Kidney Dis, 2012

no dialysis or transplant

dialysis or transplant

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Who cares for kidney failure patients?

• For elderly individuals with kidney failure –

who cares for them?

– General practitioner

– Geriatrician

– Nephrologist

• In practice only a small percentage will be

referred to a nephrologist

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Case study - Jim

Background

• 74 years old

• Retired farmer

• Lives at home in a small rural

town with his wife of 26 years

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Case study - Jim

Medical history

Type 2 diabetes Insulin-dependent 5 years

Neuropathy, retinopathy, previous

osteomyelitis & foot ulcers

Hypertension 15 years

Hypercholesterolaemia 15 years

Ischaemic heart disease 10 years

L Nephrectomy In 2006 for kidney cancer

eGFR 18 mL/min/1.73 m2

(20 mL/min/1.73m2 4 months ago)

Albumin/ creatinine ratio 28 mg/mmol

Pulmonary fibrosis Needs oxygen at night

Medications Diltiazem, perindopril, aspirin, simvastatin,

atenolol

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Staging CKDCombine eGFR stage, albuminuria stage and underlying diagnosis to specify CKD stage

e.g. stage 3b CKD with microalbuminuria secondary to diabetic kidney disease

Chronic Kidney Disease (CKD) Management in Primary Care, 4th edition. Kidney Health Australia: Melbourne, 2020

Jim is hereJim is here

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Not to be reproduced or copied without permission from Kidney Health AustraliaChronic Kidney Disease (CKD) Management in Primary Care, 4th edition. Kidney Health Australia: Melbourne, 2020 p31-33

Managing CKD in primary care

Follow the corresponding

colour-coded action plan

found in the handbook

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At this stage in Jim’s CKD, what are your main management goals?

Options:

a) Continue to monitor Jim

b) Refer to Nephrologist

c) Discuss treatment options for kidney failure

d) Discuss an Advance Care Directive with Jim

Question:

Case study

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c) 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

d) Advance Care Directive

b) Referral to a Nephrologist is recommended when eGFR

<30 mL/min/1.73m2. Appropriate referral not only allows for

appropriate management but provides time to discuss treatment

options.

Answer

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Not to be reproduced or copied without permission from Kidney Health AustraliaChronic Kidney Disease (CKD) Management in Primary Care, 4th edition. Kidney Health Australia: Melbourne, 2020 p61

Nephrology referral

guidelines…

The decision to refer

should always be

individualised,

particularly in younger

patients.

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Preserve Kidney Function

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Preserve Kidney Function

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Treatment options - Dialysis

Haemodialysis is connecting to a

haemodialysis machine at home

or hospital, ~3x /week lasting 5

hours each.

Peritoneal Dialysis is a

tube permanently inserted into the

abdomen. Fluids are then introduced

regularly to draw waste from the body.

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• 4-7 years ave. wait time for a

deceased donor organ

• Living donor transplants- before

dialysis is started- is called pre-

emptive transplantation

– make up 11% of all transplant

operations in Australia.

Treatment options - Transplantation

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Treatment options - Comprehensive

Conservative Care

• Dialysis or kidney transplantation is not suited to

everyone

• Comprehensive Conservative Care (CCC) aims to

preserve kidney function through dietary management

and medications

• CCC cannot stop the decline in kidney function

Further information on treatment options available at www.kidney.org.au

or by calling Kidney Helpline on 1800 454 363

http://www.kidney.org.au/

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Treatment options for kidney failure

Comprehensive Conservative Care

• A treatment for kidney failure that does not involve dialysis or transplant.

• Aimed at minimising symptoms and complications with medication and maximising quality of life

• Progression to end of life will occur

• Lifestyle and Quality Of Life are important considerations in choosing the right treatment

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CKD 3/4

Diagnosis & treatment, treat

comorbidities & slow progression

Renal Unit CKD Management

CKD 3/4

Estimate progression, treat complications,

educate patient & family about all treatment

options

CKD 5

Treatment = Dialysis, transplantation or

CCC, control symptoms, address

complications, QOL

Manage complications of CKD

Palliative

care (end of

life)

Palliative Care

CKD risk factor reduction, CKD management

Screen patients for CKD risk factors

Primary Care CKD Management

CKD

diagnosis /

progression

Referral to NephrologistCKD progression

CKD pathway

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It is not a static

process and is

not limited to a

single point in

time

Decision making

Peritoneal dialysis

Transplant

Nocturnal dialysis

Haemodialysis

CCC

Home dialysis

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Case study

Imagine that you have recently learned that you

have stage 4 CKD and are likely to progress to

Kidney Failure within the next 3 months.

What factors in your own situation

might change your management

choice?

Submit your suggestions in the

public chat box.

Question:

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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 Kidney Failure may be willing to trade

considerable life expectancy to reduce the burden and restrictions

imposed by dialysis

Morton RL et al. CMAJ 2012

Relocation

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Case study - Jim

What could you do if Jim was

struggling with the decision about

treatment?

Submit your suggestions in the

public chat box.

Question:

You discuss each treatment option with Jim and his wife.

You feel that Jim has a good understanding of the options

available.

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Renal Replacement

Pathway

Conservative Care Pathway

Undecided PathwayAll Options

legitimate

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Legal issues

Where do things stand legally when a patient refuses dialysis

treatment or chooses to stop dialysis treatment.

• 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.

Declines

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Legal issues Unless incompetent, patients have an absolute legal &

moral right to consent to, withdraw or refuse treatment

without any obligation to explain.

• Doctors have a responsibility to:– fully inform

– discuss options and reasons

– support

• If a doctor has concerns about competence, or legal

implications, then they should:– seek another opinion

– discuss with colleagues & the patient's nephrologist), and/or

– obtain advice from their medical indemnity provider

Decline

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Case study

How would you help Jim’s family

understand Jim’s decision for

non-dialysis care?

Question: Submit your suggestions in the

public chat box.

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CARI recommendation for

dialysis

is an expectation of

survival with a quality of

life acceptable to the

patient

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SurvivalDialysis versus a non-dialysis pathway

An Australasian study showed that elderly patients with kidney failure who commence dialysis have high mortality.

• 1-year survival of 77%, 2-year survival of 59% and 3-year survival of 45%

• Survival of elderly patients with Kidney Failure on a non-dialysis pathway is difficult to estimate because of lack of data

• Survival without dialysis may be between 9 - 22 months

• More comorbidities = worse outcomes

Foote C, Ninomiya T, Gallagher M et al. NDT 2012

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Survival is related to co-morbidities

Chandna SM. et al. NDT 2010

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Factors in Survival

• Age

• Comorbidities

• Frailty

• Social Determinants

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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 comprehensive conservative care at

home, with involvement of the local GP and palliative

care team

• What to expect now…

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Jim is seen a month later and is complaining of the

following issues

• Surges of neuropathic pain in his feet

• Severe itch

• A sensation of being unable to keep his legs still

• Ongoing breathlessness and nausea

• Difficulty sleeping

Jim’s family believe that Jim would not be

experiencing these symptoms if he was on dialysis.

Is this true or false?

Question:

Case study - Jim

a) True

b) False

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b) False....Symptoms in Kidney Failure managed with and without dialysis

Murtagh F et al, J Pall Med 2007; Adv Chr Kidney Dis 2007

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% 61%

Nausea 33%

Restless legs 30% 48%

Depression 27% 40%

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Symptom assessment

• Several symptom inventory tools validated for Kidney Failure

• 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

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Case study – Jim’s Symptoms

You see Jim for his 6-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.

• Using the POS-S Renal tool you identify that Jim is having

the most difficulty with pain control.

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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


Case study- Jim

Jim is here

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Case study

What are the recommended steps for

managing pain for patients undergoing

comprehensive conservative care for

kidney failure?

a) Determine cause & severity

b) Develop pain management plan

c) Refer to pain clinic

d) I honestly have no idea

Question

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Pain in kidney failure

• Common in kidney failure with & 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

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Pain management

It is important to determine a cause for the pain

Mild – moderate pain Moderate – severe pain

• Paracetamol or tramadol

• Analgesics not as effective for

neuropathic pain

• Avoid NSAIDS and COX-2

inhibitors: can adversely affect

kidney function

• Many opioids are renally excreted

• Opioid choice and dose/interval

individualised to each patient

o Fentanyl safest as its renally excreted

metabolites are inactive

o Morphine and oxycodone have active

metabolites which accumulate and can be

toxic

o Hydromorphone use is controversial as its

metabolite can accumulate → but evidence

in humans in lacking

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Common symptoms in kidney failure

• Acidosis

• Anaemia

• Cognitive decline

• Depression

• Haematuria

• Hyperkalaemia

• Malnutrition

• Muscle & bone disorder

• Muscle cramps

• Oedema

• Pruritus

• Restless legs

• Sleep apnoea

• Uraemia


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Anaemia in CKD

• Symptoms usually develop when eGFR

<60mL/min/1.73m2

• Prevalence increases as eGFR

declines

• Can contribute to symptoms of fatigue,

depression and sleep disturbances

• >70% of people with kidney failure

have anaemia1

1. Int. J. Mol. Sci. 2020, 21, 725; The Influence of Inflammation on Anemia in CKD Patients. Ann Gluba-Brzozka


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Cognitive decline

• CKD affects global cognition, attention,

memory & executive functions

• CKD is a risk factor or accelerated aging

• Cognitive impairment is common, & severity

increases with CKD stage

Things to consider in assessment:


o Screen for cognition in CKD – Mini-Mental

State Examination (MMSE)

o Safety

o Medication adherence / Medication review

o Falls

o Risk of delirium

o Self-care issues and engagement with care

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Psychosocial issues

• Depression and/or anxiety is common throughout CKD

& can affect:

1/5 people with CKD

&

1/3 people on dialysis

• Depression & CKD effect mortality, hospitalisation,

medication & treatment adherence, nutrition & quality

of life

• Screen regularly, maintain clinical awareness of

depression – DAS-21 or Kessler K10

Chronic Kidney Disease (CKD) Management in Primary Care, 4th edition. Kidney Health Australia: Melbourne, 2020 pp71-72

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Symptoms of depression Symptoms of Kidney FailureDepressed mood

Psychomotor agitation or retardation

Loss of interest or pleasure

Difficulty concentrating

Decreased appetite or weight change

Sleep disturbance/fatigue

Aches and pains

Feelings of worthlessness or guilt

Preoccupation with death

Suicidal ideation

Encephalopathy

Anorexia / oedema

Sleep apnoea, anaemia, volume

Neuropathy / arthropathy

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*algorithm for

management of

depression in CKD &

Kidney failure

*Proposed Heyadati KI, 2012

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Pruritus

• Itchy skin is a common and debilitating side

effect of CKD – affects up to 70% of people with

stage 4-5 CKD.

• Multifactorial causes:

– calcium & phosphate imbalance,

– inadequate dialysis,

– overactive parathyroid glad,

– magnesium and Vit A levels,

– nerve changes in the skin


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Restless legs syndrome

• Common in kidney failure with & without dialysis

with eGFR <15mL/min/1.73m2

• 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


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.

*Gabapentin is PBS indicated for refractory neuropathic pain

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Case study Jim

For Jim’s neuropathic pain, pruritus and restless leg syndrome…

• Gabapentin for (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

For Jim, the following treatment and dosing was considered in his

comprehensive conservative care plan…

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Case study - Jim

For Jim’s nausea…

• Metoclopramide HCl – 10mg half hour before meals

• Also helps early satiety and gastroparesis related to diabetes

• Haloperidol

- 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 * Delirium - 1mg bd

• Ondansetron not recommended due to it being expensive & constipating

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Nausea

• Common and often multifactorial in origin

• Significantly affects quality of life & 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

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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

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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

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Management of dyspnoea

Non-

pharmacological

Pharmacological Pharmacological detail

• Calm

reassurance

• Fan

• Sitting upright

• Open window

• Oxygen

• Sedatives

• Opioids

• Antisecretory

agents

• Conscious (lorazepam 0.5mg

SL bd)

• Unconscious (midazolam)

• Commence with small doses

of hydromorphone 0.25-

0.5mg qid & carefully titrate to

response

• Scopolamine, glycopyrrolate

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Case study - Jim

The rate at which Jim’s kidney function has declined allows a

rough prediction kidney function is likely not to survive longer

than a year.

15

20

10

5

30

0 1 3 542

Predicted decline of GFReGFR

Months

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Jim’s chosen treatment pathway

requires end of life planning.

For Jim’s follow up

appointments, what are your

next considerations?

a) Advance care planning

b) End of life planning

c) Kidney function preservation

d) Symptom management

e) Quality of life

Question:

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Advance care planning

Advance care planning should be already in place for…

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

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Recommendations

1. Discussions should include the patient’s family

2. Content of discussion and documentation should include:

• Nature of Kidney Failure, 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 & all other active

treatment cease & a purely palliative approach commence. This process may continue over many

conversations

3. Should be documented and universally available to relevant parties

It is both advisable and appropriate to initiate ACP with a Kidney Failure patient

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Dying with dignity: What patients want

Meanings of dying with dignity from perspective of patients, families & health professionals

Guo & Jacelon Palliative Medicine 2014

Themes Patients Health Professionals Families

A human right ✓ ✓

Autonomy and independence ✓ ✓ ✓

Relieved symptom distress ✓ ✓ ✓

Respect ✓ ✓ ✓

Being human and being self ✓ ✓ ✓

Meaningful relationships ✓ ✓ ✓

Dignified treatment and care ✓ ✓ ✓

Existential and spiritual satisfaction ✓ ✓

Privacy ✓ ✓

Safe and calm environment ✓

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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

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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

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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 sedation in trying

to settle a restless, agitated, delirious person who is

imminently dying

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Key points

• Treatment decision making process is ongoing

• Need to respect individual “informed” decisions

• Tools are available to help decision-making process

• Well managed comprehensive conservative care is an attractive

option particularly when co-morbidities present

• GPs play an important role in symptom management

• Communication critical to ensuring comfort in terminal phase

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Patient resources

Kidney HelplineFree call information service

Contact 1800 454 363

[email protected]

Kidney Health Australia Resource Hub

Kidney.org.auFactsheets, books & videos

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Kidney failure patient resources

An introduction to series of books includes:Kidney Disease Treatment Options

Peritoneal Dialysis

Haemodialysis

Home Dialysis

Kidney Transplantation

Live Kidney Donation

Living with Kidney

FailurePatient information

booklets, fact sheets,

App, Kidney Helpline,

and more

www.kidney.org.au/resources

My Kidneys, My ChoiceContains a check list of issues to consider

kidney.org.au/your-kidneys/treatment/my-kidneys-my-choice

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How can I get the 4th edition handbook?

Download a free digital copy at

www.kidney.org.au/health-

professionals

Buy a hardcopy ($15) from

www.kidney.org.au/shop

CKD-GO! App

can be downloaded for FREE on the

iPhone & Android app stores

http://www.kidney.org.au/health-professionals

http://www.kidney.org.au/shop

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Want to learn more about CKD?

1. Go to kidney.org.au/health-professionals/webinars

for interactive webinars & recordings

2. Complete our free online

learning available at

www.thinkgp.com.au/KHA

Documents

Decision making and symptom control in kidney failure