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Kidney Supportive Care: Evaluation of Treatment Decision-Making and Advance Care Plans

Prof Ann Bonner RN, PhD School of Nursing, Queensland University of Technology, Brisbane, Australia

Visiting Research Fellow, Kidney Health Service, Metro North Hospital and Health Service, Brisbane, Australia

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Background

• The wellbeing of people with advanced chronic kidney disease is greatly impaired.

• People have limited knowledge of KRT – yet are participating in complex decisions about different treatment pathways.

• A kidney supportive care (KSC) program could assist with complex decision-making.

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Kidney (or Renal) Supportive Care

For all CKD/ESKD patients (focus on frailty regardless of its cause and CKD stage)

• Includes people: CKD stage 4 CKD stage 5 CKD stage 5D (on dialysis and/or failing transplant)

• Person-centred care Shared decision making in a safe (‘ethos’) environment Coaching and support patient/family in self-discovery; dealing with unfinished business

in life Advance Care Planning Social and family support, etc… Emphasis on symptom-burden reduction and health-related quality of life Planned withdrawal from dialysis

Davison et al KDIGO Supportive Care, Kidney Int; 2015

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Kidney Health Service

Palliative & Supportive Care Service

Kidney Supportive Care Program

Symptom management

Support for dialysis decision-making

Psychosocial support

Planning for end-of-life

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Metro North Hospital and Health Service – Brisbane, Australia

Kidney Health Service 9 sites

2 x hospitals 2 x satellite dialysis units Home training (PD & HD) 4 x Community outpatient clinics

Royal Brisbane & Women’s Hospital largest hospital in Australia Performed 1st dialysis in Australia

(1955) >3,000 CKD stages 3-5 2 Nurse Practitioners Nurse-led CKD model of care

Size = 4,157 km2

Brisbane to north of Kilcoy

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KSCp model of care

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Health Services Evaluation Research

Aim

• To examine the type of decisions made by patients who attended a structured KSC program

Methods

• Implementation Science methodology (CFIR)

• Prospective longitudinal observation

Outcomes: • Clinical

• PROMs

• PREMs

Health

economics

Staff

perspectives

Patient/family

perspectives

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12% of referred patients ≤50

0

2 0

4 0

6 0

8 0

1 0 0

0

M e d ia n a g e o f K S C p a t ie n tsA

ge

(y

ea

rs

) 73

F e m a le M a le

0

5 0

1 0 0

G e n d e r

% o

f p

ati

en

ts

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0 2 0 4 0 6 0

T r a n s p la n t

P D

H o m e H D

N o t o n d ia lys is

H D

M a n a g e m e n t p a th w a y

% o f p a t ie n ts

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64 people changed

their treatment pathway

From pre-KRT to non-KRT

Withdrawing from KRT

From PD to in-

centre HD Commencing KRT

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C h a n g e d p a th w a y D id n o t c h a n g e

0

6 5

7 0

7 5

8 0

A g e d iffe re n c e o f th o s e w h o c h a n g e d

o r d id n 't c h a n g e p a th w a yA

ge

(y

ea

rs

)

* * *

C h a n g e d p a th w a y D id n o t c h a n g e

0

4

6

8

1 0

C o -m o rb id it ie s o f th o s e w h o c h a n g e d

o r d id n 't c h a n g e p a th w a y

Ch

arls

on

co

-mo

rb

idit

y s

co

re

* * * *

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62%

“Time before last when I went the question was: where do you

want to die? And that was one question that I had never thought

about because—what, there’s a choice?

~KSC patient

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Poppel et al. Brown et al. Chao et

al.

Rak et al. Purtell et al.

Year 2003 2013 2015 2016 2018

Country USA Australia Taiwan USA Australia

Outpatient clinic - X - - X

Home visits - - X X -

Multidisciplinary team X X X X X

Nurse X X X X X

Nephrologist/trainee X X Unclear X X

Palliative medicine specialist X* X X X X

Dietician - X X - -

Social worker X X X X X

Pharmacist - - X - X

Psychologist - - X - -

Bioethicist - - - X -

Patients receiving dialysis X - X** X X

Patients receiving conservative care - X X X X

*only for education of other clinicians

** only upon dialysis withdrawal decision

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“If my patients trust me, then they trust me and I

can send them to a dozen other teams or a dozen

other people and they’ll still trust me. I don’t own

these patients like they’re money in a bank, I

provide care for them. If I’m a nephrologist, I can’t

provide all facets of all of their care myself. So

why pretend I can?”

~Stakeholder

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Conclusion/Implications for Practice

• Patients and carers were better prepared to actively participate in treatment decision-making and to engage in conversations about advance care plans.

• The multidisciplinary KSC team have skill sets to deliver a structured yet individualised program with treatment decisions communicated to other treating teams.

• Patient and carers experiences and satisfaction with the program are routinely evaluated to ensure it is meeting their needs.

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Acknowledgements

Dr Louise Purtell Research participants

Dr Helen Healy

Dr Katrina Kramer

Carla Scuderi

Tamika McNae

Ilse Berquier

Dr Carol Douglas

Michelle Rice

Dr Nash Weir

Jenny Kirby

Laura Austin

Dr Marcin Sowa

Prof Wendy Hoy

louise.purtell@qut.edu.au