Renal Supportive Care – “Setting the scene” Kelly Li, Nephrologist and Palliative Medicine...

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Renal Supportive Care – “Setting the scene”

Kelly Li,Nephrologist and Palliative Medicine

Trainee

Frank Brennan Palliative Care Consultant,

Department of Nephrology St George Hospital

Sydney

Renal Supportive Care Master Class,

Sydney, August 2015

• The nature of Nephrology

• The nature of Palliative Care

• What possible interface exists between the two disciplines ?

• The scope of Renal Supportive Care

• An overview of the Master Class

A tale of two specialties

The scope and responsibility of the discipline of Nephrology

What nephrologists do...

• When I first entered nephrology:

• BP <140/90

• ACEI reduces mortality

• As many transplants as possible

Whilst that hasn’t changed...

Growing number of elderly dialysis patients– Not best transplant candidates

ANZDATA registry 37th annual report

• Growing number of elderly dialysis patients– Not best transplant candidates– Lots of comorbidities

ANZDATA registry 37th annual report

The hardest question for nephrologists

Will my patient benefit from dialysis?

The hardest question for nephrologists

• Will my patient benefit from dialysis?

• https://s-media-cache-ak0.pinimg.com/236x/99/f8/37/99f837218df3b146a2bf05314936735d.jpghttps://s-media-cache-ak0.pinimg.com/236x/99/f8/37/99f837218df3b146a2bf05314936735d.jpg

Dialysis is life-saving for some

• http://www.china.org.cn/china/2013-01/21/content_27747038.htm

Newer and better machines

• http://health.clevelandclinic.org/wp-content/tn3/0/artifical-kidney-dialysis.jpg

• https://www.fresenius.com/images/Dialysis_machine.jpg

But is dialysis for everyone with ESKD?

But is dialysis for everyone with ESKD?

Limited or no benefit for some?

Murtagh F et al. Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5. NDT (2007) 22: 1955–1962

Kurella et al. Functional status of elderly adults before and after initiation of dialysis. NEJM 2009;361:1539–47

Does everyone who has ESKD commence dialysis ?

In Australia, for every one patient with ESKD receiving Renal Replacement Therapy (RRT)

there is another who does not receive RRT

Australian Institute of Health and Welfare Research, 2011

For those who don’t go on dialysis

• How do we look after these patients?

– Can we still help?

– What are the care needs?

– What supports are there?

“What will happen to me if I don’t start Dialysis ?”

CKD conservative management

CKD conservative management

NOT abandonment

CKD conservative management

NOT discharge to Palliative Care

If this is being raised as an option :

What does a Conservative pathway mean ?

What is its content ?

Can we make predictions about theircourse ?

Challenge is

to ensure that this pathway of management is not seen as “second best” or inadequate

but is thorough, systematic and evidenced-based

CKD conservative management

• Fluid/BP/electrolyte/anaemia

• Symptom management

• Psychosocial support

• Advance care planning

• Community palliative care

• Terminal phase

Withdrawal from dialysis

Survival on dialysis

ANZDATA registry 37th annual report

ANZDATA registry 37th annual report

ANZDATA registry 37th annual report

End of life discussions

• Communication skills

• Time

• Preparedness

• Willingness

The quality of dying

The circumstances in which patients with ESRD die varies considerably

If it is an expected death (eg. after the cessation of dialysis) the management of the dying phase is crucial

and the manner of that dying will be remembered forever by the family

Symptom control

Nephrology clinic Nephrologist says...

• Fluid restriction• Sodium restriction • Potassium

restriction• Phosphate

restriction• Caloric restriction• Sugar restriction

(diabetics)

Nephrology clinic Nephrologist says...

• Fluid restriction• Sodium restriction • Potassium

restriction• Phosphate

restriction• Caloric restriction• Sugar restriction

(diabetics)

Renal patient says...

https://s-media-cache-ak0.pinimg.com/236x/9a/58/e1/9a58e14e0e454d25670eb91254051381.jpg

“Patients with CKD, particularly those with ESRD are among the most symptomatic of any chronic disease group.”

Murtagh F, Weisbord S. Symptoms in renal disease. In Chambers EJ et al (eds) Supportive Care for the Renal

Patient 2010, 2nd ed, OUP.

The dialysis unitNephrology assessment

• Blood pressure• Fluid status• Haemoglobin• Potassium• Calcium/phosphate• Vascular access• Nutrition• Cardiovascular/

metabolic

The dialysis unit

Palliative care assessment

• RUG ADL

• Problem severity scare– Pain– Other symptoms– Psychological/spiritual– Family/carer

• Patient rated score– Difficulty sleeping– Appetite problems– Nausea– Bowel problems– Breathing problems– Fatigue– Pain – Uraemic pruritus– Restless legs

Saini et al. Comparative pilot study of symptoms and quality of life in cancer patients and patients with end stage renal disease. Palliative Medicine 2006; 20: 631-636

Saini et al. Comparative pilot study of symptoms and quality of life in cancer patients and patients with end stage renal disease. Palliative Medicine 2006; 20: 631-636

Do nephrology and palliative care

have anything in common?

Nephrologists can be a little eccentric

The world of palliative medicine is much more civilised...

What is Palliative Care ?

WHO definition (2002)WHO definition (2002)

Palliative Care is an approach which improves the quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Modern view of Palliative Medicine

A. That Palliative Care is involved in all patients with life-limiting illnesses – not just cancer patients.

Modern view of Palliative Medicine

B. Early involvement : “There is wide recognition that the principles of palliative care should be applied as early as possible in the course of any chronic, ultimately fatal illness.”

C. The concept of concurrent care : that active care and palliative care can and should occur concurrently.

D. That the “death –bed consultation” is a set of missed opportunities.

Benefits of early involvement–

- reinforcement of idea of comfort.

- that symptom control is impeccable

throughout.

- establishing a rapport/trust

- demystifying analgesia (opioids)

- introducing idea of Community Palliative Care

- helps avoid sense of abandonment

Barriers to effective Palliative Care

Belief that Palliative Care is simply terminal care… “not now, he’s not ready for it”

“It will send the wrong message to her”

“It will just take away her hope.”

Why is Palliative care/ a palliative approach relevant to patients with ESKD ?

1. Epidemiology

2. Mortality

ESRD patients

Overall patients with ESKD

with or without RRT have a

reduced life expectancy

compared to age-matched controls.

DIALYSIS

For patients on dialysis 13 % die each

year (ANZDATA Report 2014)

For those aged 75 years and older that figure is 25 %

3. Symptomatology

4. Quality of life

QOL - St George dialysis (SF-36 Scores)

0102030405060708090

100

PF RP BP GH VT SF RE MH

Mea

n sc

ore

(max

100

)

2001

2003

2004

2006

2008

Aust Norms

Overall QoL is very resistant to significant change.

5. The quality of dying

Competencies

Realistically, given issues of manpower,

it may not be possible for a Palliative Care health professional to be present in every

Renal Unit

What are the core competencies in a “palliative approach” to patients with ESKD for Nephrologists ?

4 Pillars of a Palliative approach

• Communication

• Symptom management

• Psychosocial support

• Care of the dying patient

Renal Supportive Care – a brief history

USA

In 1998 -

The Baystate Renal-Palliative Care Intitiative

Clinical Practice Guidelines on Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis

Renal Physicians Association of the USA and

the American Society of Nephrology. 2000.

www.renalmd.org

In 2002 –

RPA/ASN Position Paper on Quality Care at the End of Life

In 2004 –

Renal-Palliative Care Curriculum for Nephrology Trainees

Moss AH, Holley JJ. Core Curriculum in Nephrology : Palliative Care. Am J Kid D 2004;43:172-185.

In 2010 –

Clinical Practice Guidelines on Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis

Renal Physicians Association of the USA 2010.

United Kingdom

Annual Symposia on Renal-Palliative Care co-organised by both disciplines

National Service Framework for Renal Services Part 2 (UK) - 2005

Concentrated on the care of Dialysis patients nearing the end of life

Royal College of Physicians (UK)

The Changing Face of Renal Medicine in the United Kingdom

2007

National Framework for the Implementation of End of Life Care in Advanced Kidney Disease

2009

Australia and New Zealand

Throughout Australia and New Zealand there are a small but growing number of Renal Supportive Care services being formed or considered.

Crail S, Brown M et al.

ANZSN Australasian Renal Supportive Care Position Paper and Guidelines

Nephrology 2013;18: 401-454

Formation of a state-wide service in NSW

Internationally

KDIGO Controversies Conference on Supportive Care in CKD.

Mexico City 2013

Davison SN et al.

Executive summary of the KDIGO Controversies Conference on Supportive Care in CKD : developing a roadmap to improving quality care.

Kidney International, Advance online publication, April 29 2015.

Textbooks

Chambers EJ, Germain M, Brown E (eds)

Supportive Care for the Renal Patient

2nd edition, 2010

Oxford University Press

Brown E, Chambers EJ, Eggeling C.

End of Life Care in Nephrology

-from Advanced Disease to Bereavement

2007

Oxford Specialist Handbooks

First Australian and New Zealand

Renal Supportive Care Master Class

Sydney, August 2015

The issues in decision making for patients with ESKD in the commencement of either dialysis or a conservative, non dialytic pathway.

Dr Celine Foote, Nephrologist

Symptom management in Chronic Kidney Disease – Part 1

Frank Brennan, Palliative Care Physician

Symptom management in Chronic Kidney Disease – Part 2

Anxiety and Depression

Dr Kirsty Morris, Consultant Psychiatrist

Advance Care Planning in Nephrology

Dr Elizabeth Stallworthy, Nephrologist

Renal Supportive Care – Indigenous issues.

Dr Cherian Siv, Nephrologist

Canvassing difficult clinical situations

Small group discussions co-facilitated by a Nephrologist and Palliative Care Physician.

The care of the dying patient who has ESKD

Dr Kat Urban, Palliative Care Physician

Conclusion

The histories of the two disciplines are intersecting

Conclusion

A mutual acknowledgement of need-

The role of Palliative Care in ESRD

The last decade has seen considerable levels of advocacy, attitudinal shift, research, publications and collaboration

Throughout the course of the illness there are times when difficult conversations may need to occur

Palliative Care/ a palliative approach can play an important role throughout the course of ESRD

4 Pillars of a Palliative approach

• Communication

• Symptom management

• Psychosocial support

• Care of the dying patient

Applies to patients who are being managed with either with RRT or conservatively