stream - Whats the issue we are addressing ? What have we already - - PowerPoint PPT Presentation

ODN supportive care work stream -

What’s the issue we are addressing ? What have we already done ? What would we like to do What’s your role in all of this ?

Patient 3 88 yr old at time of treatment decision

• Pulmonary TB 1950s - 30-

May-2014

• Asthma - 30-May-2014
• Hypertension - 30-May-

2014

• Hypercholesterolaemia - 30-

May-2014

• Pre-eclampsia with first

child - 19-Jun-2014

• GFR = 7

Patient 3 88 yr old at time of treatment decision

• Pulmonary TB 1950s - 30-May-

2014

• Asthma - 30-May-2014
• Hypertension - 30-May-2014
• Hypercholesterolaemia - 30-

May-2014

• Pre-eclampsia with first child -

19-Jun-2014

• GFR = 7 (no available

trajectory as presented late)

Patient 3 alive at 93

• GFR 6-7
• Pottering successfully
• No major intervening life

events

Patient 4 - aged 85 at time of treatment decision

• Probable diabetic nephropathy -

18-Aug-2006

• Hypertension 1980's - 18-Aug-

2006

• Obesity - 18-Aug-2006
• DM care GP, Eyes KCH - 17-Oct-

2007

• AF - 21-Aug-2017
• Stroke - R quadrantinopia - 21-

Aug-2017

• Left femoral popliteal bypass

graft, plastied 2/2011 - on Aspirin and Warfarin until 2017 - 14-Sep- 2017

Patient 4 - aged 85 at time of treatment decision

• Probable diabetic nephropathy -

18-Aug-2006

• Hypertension 1980's - 18-Aug-

2006

• Obesity - 18-Aug-2006
• DM care GP, Eyes KCH - 17-Oct-

2007

• AF - 21-Aug-2017
• Stroke - R quadrantinopia - 21-

Aug-2017

• Left femoral popliteal bypass

graft, plastied 2/2011 - on Aspirin and Warfarin until 2017 - 14-Sep- 2017

Events

• Sept 2017 seen in LCC and decided to go for HD
• Nov 2017 – developed symptoms
• 7th Dec 2017 AVF formed – weak thrill and bruit
• Jan 2018 seen in LCC. AVF not matured – decision for HD

revisited & referred to supp care clinic

• April 2018 – decision made for SC
• Continued to be seen at home with symptom management.
• Frequent phone calls in between visits as necessary
• Dec 2018 – seen at home. Deteriorating and generally less

well and increasingly frail – referred to St C’s.

• Jan 2019 – joint home visit with St C’s
• March 2019 – admitted to KCH under gastro team with D&V.

Treated with Abs.

• Decision re RRT revisited and very clear did not want RRT
• Further deterioration and end of life care and PPC discussed
• PPC hospice as not ideal home environment (not suitable/no

room for equipment) and husband not in best of health and felt wouldn’t cope

• Transferred to St C’s hospice on 2nd April where died

peacefully on 16th April with husband and niece present

• May 2019 - Follow up with husband. He felt sup care was the

right decision and was happy that she had a peaceful death in the place of her choice

Patient 2 - aged 87 at time of treatment decision

• OA - 12-Jun-2008
• Rt THR and Rt TKR (complicated by #patella) -

28-Oct-2009

• Speaks Turkish only - 28-Oct-2009
• SMD and cataracts - 28-Oct-2009
• Hysterectomy and cholecystectomy - 28-Oct-

2009

• Hypertension, dyslipidaemia - 21-Apr-2011
• Osteoporosis - 04-Jul-2013
• n CPAP for OSA - 04-Sep-2014
• Wheelchair bound - 02-Aug-2017
• 2017 Lt ICA stenosis - 12-Feb-2018
• CKD stage V - HTN +/- RAS - 09-May-201
• Multiple clinic attender

Patient 2 - aged 87 at time of treatment decision

• OA - 12-Jun-2008
• Rt THR and Rt TKR (complicated by #patella) -

28-Oct-2009

• Speaks Turkish only - 28-Oct-2009
• SMD and cataracts - 28-Oct-2009
• Hysterectomy and cholecystectomy - 28-Oct-

2009

• Hypertension, dyslipidaemia - 21-Apr-2011
• Osteoporosis - 04-Jul-2013
• n CPAP for OSA - 04-Sep-2014
• Wheelchair bound - 02-Aug-2017
• 2017 Lt ICA stenosis - 12-Feb-2018
• CKD stage V - HTN +/- RAS - 09-May-201
• Multiple clinic attender
• 8 opds in AKCC over 14 months
• For second opd she had clear discussions

about dialysis not thought to help extend life (limited discussions in nephrology)

• Patient had significant cognitive challenges
• Family very keen for her to have HD or PD
• Met our SC sister
• Missed multiple further opds because too ill

to travel (severe uraemic symptoms)

• Declined attempts by both hospital and GP

staff to involve community palliative care and set up an end of life plan

• Presented to local A and E in extremis
• Family declined a plan for her to be kept

comfortable and requested intubation

• Patient died in A and E intubated and

distressed

Patient 5 - aged 66 at time of treatment decision

• Type 2 diabetes 2005 with poor control 27-Jun-2013
• Obesity - 27-Jun-2013
• Obsessive compulsive disorder - Lithium 1985 - Stepping

Stones Community Mental Health Team - 27-Jun-2013

• Hypertension 2013 - 27-Jun-2013
• Psych assessment (Stepping Stones) - reducing doses of

Lithium - 06-Sep-2013

• Ex smoker stopped 1985 - 15-Apr-2014
• Likely IHD - Angio planned post AVF (J. Byrne) - 30-Oct-2015
• Aug 2015 Central retinal artery occlusion (Left eye).

Moorfields - 14-Jan-2016

• Oct 2015 Rubeotic glaucoma post L central retinal artery
• cclusion - PRPV - 14-Jan-2016
• L vitreous haemorrhage - 14-Jan-2016
• Left MCA infarct with residual weakness and dysphasia - 07-

Oct-2016

• Started HD Sep 2016 - 07-Oct-2016
• April 19- on level 6 soft and bite sized diet (IDDSI 6) and level

1 slightly thick fluids (1 scoop nutilis clear to 200ml) - 11-Mar- 2019

Patient 5 - aged 66 at time of treatment decision

• Type 2 diabetes 2005 with poor control 27-Jun-

2013

• Obesity - 27-Jun-2013
• Obsessive compulsive disorder - Lithium 1985 -

Stepping Stones Community Mental Health Team - 27-Jun-2013

• Hypertension 2013 - 27-Jun-2013
• Psych assessment (Stepping Stones) - reducing

doses of Lithium - 06-Sep-2013

• Ex smoker stopped 1985 - 15-Apr-2014
• Likely IHD - Angio planned post AVF (J. Byrne) -

30-Oct-2015

• Aug 2015 Central retinal artery occlusion (Left

eye). Moorfields - 14-Jan-2016

• Oct 2015 Rubeotic glaucoma post L central

retinal artery occlusion - PRPV - 14-Jan-2016

• L vitreous haemorrhage - 14-Jan-2016
• Left MCA infarct with residual weakness and

dysphasia - 07-Oct-2016

• Started HD Sep 2016 - 07-Oct-2016
• April 19- on level 6 soft and bite sized diet (IDDSI

6) and level 1 slightly thick fluids (1 scoop nutilis clear to 200ml) - 11-Mar-2019

Patient 4 - aged 66 at time of treatment decision

• March 2019 – Consultant & sup care CNS saw on

HD for increasing symptoms including extreme pain from DM foot. Changed analgesia.

• April 2019 - admitted following an unresponsive

episode on HD – deteriorating on HD

• Met with husband spoke about whether now

was the right time to stop dialysis.

• He spoke openly about feeling that he lost her in

May 2016 after she had the stroke and feels that her condition has further deteriorated significantly in April this year

• Refuses to go for dialysis /oral intake minimal.
• Has not got the mental capacity to make a

decision about her health care.

• Team agreement with NOK that dialysis no

longer having a positive effect and that we support a decision to stop dialysis

• Urgent referral made to St C's for care home

support.

• PPC – care home with St C’s support
• Died peacefully 16/05/19 at care home

What is supportive care ?

• Right care

– Dialysis where helpful – Supportive care/CGA/ end of life care

• Right patient

– What do they want – From what might they benefit

• Right time
• Early signposting
• Changing goals through renal journey
• When applied to our more elderly and more frail patients

Key facts

• Late stage kidney disease considerably shortens life expectancy compared to aged

matched controls (worse than many cancers)

• Older dialysis patients do much less well than younger ones
• For those starting dialysis from a nursing home (or equivalent) only 13% are alive

and at the same functional level one year later (others have died or declined)

• The benefits of dialysis in terms of life expectancy and QOL are less clear for -

patients over 65 with significant co-morbidity and patients over 80

• Dialysis patients can still have significant symptom burden
• Some older patients do really well on dialysis , gain years of life and improve their

symptom burden - UNCERTAINTY

Total South London advanced kidney care patients by age

• 451 patients between the

age of 65 and 80

• 364 patients who are over

the age of 80

• On average those with

advanced CKD are physiologically 10 years

• lder than their

chronological age

< 65 yrs 931; 53% 65-79 yrs 451; 26% > 80 yrs 364; 21%

Total South London pre-dialysis patients by age

Older Dialysis patients in South London

953 are 65 – 79yrs ; 467 are > 80yrs

1,304 ; 50% 861 ; 33% 432 ; 17%

Total South London HD patients by age

HD patients under 65 HD patients 65><80 HD patients over 80

153 ; 55% 92 ; 33% 35 ; 12%

Total South London PD patients by age

PD patients under 65 PD patients 65><80 PD patients over 80

OUR VISION

• Provide information and support

by skilled and competent health care professionals in order for patients to make the right decision for them and their family.

• To facilitate holistic positive care

to those patients with late stage kidney disease who choose not to start renal replacement therapy

• To facilitate holistic care for

dialysis patients for whom

• ptimising quality of life has

become the predominant goal, including care for those who wish to withdraw from renal replacement therapy THE HOW

• Understand patients currently

requiring Supportive Care within low clearance and dialysis population ( baseline measurement)

• Increase numbers of

conversations with patient group and understand effectiveness of SDM

• Develop competencies for

professionals to enable conversations ( baseline survey

• Understand models of care and

workforce within current provision and develop a Supportive Care specification

• Agree KPI’s with units to develop

data collection dashboard

• Understand patient experience of

pathway A vision for supportive care for renal patients in South London

Supportive care

• Gen. Nephrology /AKCC
• Treatment choice

– Identified patients – Educated staff able address prognosis – Consistent messages – Educational materials – Periodic revisiting of pathway choice

• Treatment pathway

– Preserve renal function – Symptom control – CGA – ACP – Networks of care (including community)

• Renal replacement

therapy

• Patient identification

– MDMs – SQ – Frailty scores – PROMS – Periodic revisiting

• Treatment pathway

– Holistic v biochemical/physiological – ACP – Symptom control – CGA – Withdrawal options – Community links

www.csi.kcl.ac.uk

Changing focus of care

STOP

• Using biochemical markers

as only marker of care

• Unnecessary medication

START

• Move towards controlling

symptom burden and SDM

• Signposting to falls clinic,

memory clinic, Parkinsons clinic.

Achievements

• Creation of a central MDT supportive care working group with QI

representation from all 4 Trusts

• Baseline survey of challenge and resource
• Draft staff survey to assess current knowledge, skills and confidence
• Early patient survey
• Development of supportive care education booklet
• Bespoke renal Advance Care Plan document
• Scoping exercise to assess ACP need
• UKKW poster
• Ongoing work with PPI work group review

Measurement void

How many RRT patients need a supportive care approach

91/320 = 28% 90/593 = 15% 117/737 = 15.8% SGH KCH GSTT St Helier’s 195/633 = 31%

Resource deficit

• ffer

St George’s St Helier KCH GSTT AKCC/LCC Symptom scores +

• +

+/- Preferred place

• f care

+/-

• +

+ Advance care planning

• +/-

+/- RRT Symptom scores

• +/-

+/- Preferred place

• f care
• +

+/- +/- Advance care planning

• +
• /+
• /+

Withdrawal pathway

• +

WTE SC staff 0.6 1.0 1.6 clinics+ hospices

• +

+ C of E team

• +

What next

• Create a culture in AKCC of systematic and consistent SDM

that includes a real supportive care option

• Offer ACP to all patients in RRT where we would not be

surprised if they died in the next 12 months

• Create networks of care ( care of elderly, palliative, frailty,

hospices & community teams)

• Create culture shift through QI leads and working groups
• Develop a toolkit including comms training for multi

professional team – courageous conversations

• National approach through UKRR

Challenges and risks

• Clear understanding and definition of a

supportive care pathway

• Differences in starting point between different

Trusts and difference in staffing levels

• Emotional effort of delivering difficult

information – courageous conversations

• Cultural buy in that this is part of renal care
• Absence of data and IT in this pathway

Supportive Care work-stream QI Leads

QI Associate Project Co-chairs Rachel Gair Katie Vinen Seema Shrivastava Epsom St Helier Clinical Lead David Evans Epsom St Helier MDT Lead TBC – new recruit (October) Guys & St Thomas Clinical Lead Heather Brown Guys & St Thomas MDT Lead Sarah Watson, Winifred Yeboah Kings Clinical Lead Katie Vinen Kings MDT Lead Kate Shepherd St Georges Clinical Lead Seema Shrivastava St Georges MDT Lead Angela Read / Fiona Sinclair

• Thank you to
• Anne Marie Habib
• Jackie McNicholas
• Donna Morgan
• Dominique Wakefield
• Sharon McDonald
• Lorna Donegan
• Steve Simper
• Stephen Cass
• Our contributing patients

WHO?

• Commissioners who champion this care in the specifications

and funding structures

• CD and heads of nursing who support this work in strategy

plans and team meetings and active support to their teams

• Business managers who negotiate with our private dialysis

providers

• Nursing and medical leads for AKCC and HD who take it

through QI and education within their teams

• Nurses, junior doctors and consultants who change the

culture and do the work

• Patients who take time to help us design the service

What kind of care pathway would you want for yourself and for the people you love ?

Any Questions?

Patient 1 : Treatment decision aged 91

• CA prostate 1998 - raised

PSA

• CA Stomach and

gastrectomy 1994 - 14-Sep- 2011

• PE 1993 - 14-Sep-2011
• Bilateral hearing aids - 31-

Jul-2013

• GFR 8

HD till aged 96

• Nov 2016 TAVI for AS; AF, 30 Dec Pericardial

effusion - window - 01-Mar-2017

• Bilateral cataract extractions
• 2017 Memory clinic - mild cognitive impairment;

CT head fine - 13-Jun-2017

• 2017 Hypothyroid - 13-Jun-2017
• Non traumatic #base of cervical peg - advised to

wear collar - 07-Mar-2018

• 2018 Functional/myoclonus - 24-Jul-2018
• 2018 Decline in mobility - neuroSx opinion - not

for op - 24-Jul-2018

• Nov 2018 Minimally displaced surgical neck # R

humerus - 26-Nov-2018

• Late 2018 his uremic symptoms increasingly

diminished his QOL and SC and Palliative care trams were involved Died peacefully at home January 19 supported by palliative care.

Patient 1 : Treatment decision aged 91

• CA prostate 1998 Mr Muir

reviews privately - PSA 9.3 May '11 - 14-Sep-2011

• CA Stomach and gastrectomy

1994 - 14-Sep-2011

• PE 1993 - 14-Sep-2011
• Bilateral hearing aids - 31-Jul-

2013

• GFR 8