What do we need in order to provide paediatric

palliative care at an intermediate/stepdown care

facility?

Alex Daniels

June 2018

Outline

• Background

• Motivation

• Methodology

• Results

• Evaluation

Background

Impact of life limiting and life threatening conditions on :

• Child - need holistic care

• Caregivers - need to access supportive care

• Health care professionals - require training, mentoring, support

Motivation for study

• NGO (Bigshoes) PPC consultative service - tertiary care

• Community liaison nurse

• DOH - HBC service

• Complex symptom management

• Care of the dying child and family

• Need for respite care

• Gap in service

Opportunities

• CHT - funding

• DOH Western Cape Government - ICPF

• SFCCH -10 bed palliative care unit

Methodology

• Mixed method longitudinal prospective study - 6months

• Multi faceted subject

• Three populations - patients, primary caregivers , health care professionals

• Tools

- Case report form (n=25)

- Primary caregivers questionnaire ( n=25)

- Professional’s demographic sheet (n=15)

- Focus group discussions ( 3)

Patient demographics

1

5

9

5

4

1

Neonates

Infants

Toddlers

Preschooler

Schoolgoing

Adolescent

Age on admission

Primary diagnosis

0

1

2

3

4

5

6

7

8

9

10

0 1 2 3 4 5 6 7 8

18

19

21

24

25

30

35

48

66

113

138

154

157

178

183

Patients

Days

Length of stay

Reason for admission

48%

28%

16%

8%

Transitional care

Terminal care

Respite

Symptom Mx

0

2

4

6

8

10

12

Symptoms

0 2 4 6 8 10 12 14 16 18

Paractemol

Sorbitol

Gabapentin

Baclofen

Oral Morphine

IV Morphine

Atropine eyedrops

IV Buscopan

IV Furosemide

IV Dormicum

Rectal Diazepam

Drugs used

Counselling and therapy

0

2

4

6

8

10

12

14

16

18

Medical Nursing Psychosocial Family Bereavement

0

2

4

6

8

10

12

14

16

18

Primary caregivers

Caring for their child at home

Ten respondents indicated that caring for their child at home was a difficult task

• P06:“It was very difficult, she didn’t sleep at all, always crying she did not want to sleep because of her head, only ‘Panado’ for pain but that did not work, it was difficult to look after her at home”.

• P07:“It was difficult, he needs special attention because of the way he is. There is nothing he can do or say, when you look at him you must decide what he needs or requires, not always easy”.

Health care professionals

On the death of a childP3: “For example when patient XX died, I hated seeing her suffering, when she passed on I was happy cos they in a

better place….also feel somewhat guilty because I feel so relieved that they were not suffering anymore….. different

reactions to different deaths …… I think for anyone working with a child it is a constant struggle…..feeling too much

or too little… you want to be in the middle”.

P15: “Emotionally draining to see children who you learn to love, deteriorate and pass away. They slowly

deteriorate and they don’t pass away I feel , some of the kids they fluctuate, look like they going to die, you say your

goodbyes and you cry, two days later she’s fine, then three weeks later she terminal, she’s fine again cycle

continues…”

P11: “Taxing in a way, I am young, feeling a little worn down emotionally…”

P2: “The debriefing helped us a lot….space to cry and say what you want to say, after that you feel relief in your heart

and can move on”.

Value of team

P4: “Seeing the diff that’s it made with a team approach that includes families and patient, commitment from them (staff) andenthusiasm, hunger and getting to grips with working with the big challenge of working with a PC approach and delivering very good PC….…which is often instinctive or intuitive in people but to see it overtly practised”.

P3: “Will not have coped if I had not been a part of an experienced team”.

P4: “Pro: Strong team in place, mutual respect in that unit, sense I get doesn’t matter who you are, what is your role is, you will be afforded respect for what you doing”.

P1:” Pro: especially recently there is a big team, all this big organism, with the aim to settle the child and to provide support and kind of a container for them …..I can’t be doing this in isolation”.

HCP reflections on service provision

• P6: “It’s kind of sad: I don’t know whether it is the DOH or management is not acknowledging PC…it’s kind of sad not a common practice, it is so rare to find one (PPC IPU) I am feeling sad we do not have much support for that…”

• P15: “Any place has ups and downs, politics get in the way, perhaps there is a lot of reluctance from management to come on board with PC….because whether it is financial burden that PC places on the SF budget or fact that management does not understand PC, seems like a lot of blocking.”

• P14: “People have remained positive there are good staff that have stayed there - it is a difficult place to work. People should be encouraged to practice their passion you can’t keep them in their place. We have accomplished so much despite what has been thrown in front of us, sad for what could have been…..”

Lessons learnt

• Gap in policy

• Importance of buy in from management

• Inadequate staffing ratios

• ALOS - 42days

• Time - nature of intervention

• Drug access

Acknowledgments

• Children and families of SFCCH

• Staff of SFCCH

• Supervisors : Dr Michelle Meiring and Ms Linda Ganca