How do we deliver on palliative care aspirations at the end of life in the acute setting? Jean Clark, Karen Sheward, Joy Percy, Celine Collins, Simon Allan

1. Dr Jean Clark1, 2, Karen Sheward2, Dr Joy Percy2,
Celine Collins1, Dr Simon Allan1, 2
Arohanui Hospice1, MidCentral Health2,
1

2. Aspirations
 Palliative care - delivered equitably, in a timely
manner, regardless of diagnosis or place of care…
(NZ Palliative Care Strategy 2001)
 Partnerships between ‘Specialist’ and ‘primary’
palliative care to meet palliative care need.
 Primary palliative care …. is provided in hospitals by
general ward staff, as well as disease-specific teams (eg,
oncology, respiratory, renal and cardiac teams)
(Resource and Capability Framework for Integrated Adult Palliative Care
Services in New Zealand 2013, pg 16).
2

3. Acute care: Aspirations and challenges
 Place of diagnosis, episodic care related to treatment and
exacerbations of illness, acute events
 High palliative care need in acute care internationally 13-
36% (Robinson et al 2013).
 NZ study - 19.8% of adult inpatients met the criteria for a
palliative approach (Gott, Frey, Raphael, O’Callaghan,
Robinson, & Boyd, 2011).
 Acute care –is the place of highest mortality -34% (MOH)
 Paucity of information patient’s and family’s experiences of
palliative care in hospital (Robinson, Gott & Ingelton,
2014).
3

4. Acute care: Local context
Primary providers and hospital palliative care services
(HPCS) have an interdependent relationship
 In 2013/14 approx adult 19,000 admissions in the services the
HPCS usually receives referrals
 HPCS 637 referrals 2013/14 -3.3% of the above admissions
 Deaths within Palmerston North Hospital in relevant services -
320
 HPCS - Referrals who died in hospital 110 (33 malignant & 77
non-malignant diagnosis)
 Relatively small number–approx <2% of admissions die in
hospital and HPCS involved the care of approx 35% of deaths.
 People who die in hospital approx 17% of all HPCS referrals in
2013/14.
4

5. How are we doing? – we wanted
& needed to know
 LCP use from 2006 onward –following pilot
 Increasing referrals and workload for the HPCS.
 Informal feedback from staff members regarding
concerns over aspects of end of life care in 2013.
 Observations by HPCS team members that when
referrals were received the patients management could
have been be improved earlier.
 The UK independent review of the Liverpool care
pathway for the dying patient (LCP) (Neuberger 2013).
 Two strategies – a survey and an audit
5

6. 1. Survey
How helpful would it be to routinely have the hospital
palliative care team involved when patients are
identified as dying?
Professi
on
Not
helpful
1 2
Helpful
3 4
Extremely
helpful
5
Not
applicable
Not
sure
HO
11/14
1 3 6 1
Nurses
50/144
(2 NR)
3 5 40
? 1 1
6

7. Please identify below the specific areas where
you would value support ?
 Symptom control
 The use of medications at the end of life (including subcutaneous
medication via syringe drivers)
 Conversations with family and whānau concerning the end of
life/dying process
 Conversations with family and whānau concerning food and fluids at
the end of life
 Psychological support for the family and whānau
 Psychological support for the patient
 Support for staff when the situation is complex (in terms of
symptoms, personal or social circumstances)
 Exploring discharge from hospital for end of life care in another
location (e.g. home, rest home)
 Mentoring and education
 Being part of the discussion when the plan of care is reviewed
7

8. House officers -11
 All 10 specific areas of support where selected between 6-11
times. Six made comments (specific and general)
 Most selected
 Exploring discharge options from hospital (11)
 Psychological support for the family and whānau (10)
 Least selected
 Being part of the discussion when the plan of care is
reviewed (7)
 Mentoring and education (6)
 In response to Any other comments or suggestions?
 No 11. Struggling with when to escalate interventions vs withdrawing
active treatment. This is my main issue. Diff opinions between medical and
nursing staff and I am in the middle! Would like some more support and
guidance here if possible.
8

9. Nursing respondents -50
 All 10 specific areas of support where selected between
48 – 35 times, with one comment under Other.
 Most selected
 Conversations with family and whānau concerning the end
of life/dying process (48),
 Exploring discharge from hospital for end of life care in
another location (42)
 Being part of the discussion when the plan of care is
reviewed (42).
 Least selected
 Mentoring and education (35).
9

10. Nursing respondents made many comments - in
relation to the 10 specific questions
 Range 8-3 with and average of 6.
 Concerns about having inadequate time, appropriate
management (recognising dying, medication use,
hydration & nutrition), conversations, that end of life
care is more difficult for nurses and doctors when less
experienced.
 Positive comments related to the LCP included that
there was a lot of help in the document and that it
was helpful that aged care facilities also used the LCP.
10

11. 2. Audit: End of life care over six weeks
 54 people died in the inpatient clinical areas where the
Hospital Palliative care service (HPCS) usually advise
re patient care.
 Sixteen patients were referred.
 On referral, 9 people were on the LCP.
 Audit data was collected on the initial assessment and
on one subsequent assessment only.
 Patients (14), already known to the HPCS who died
were not included in the audit.
11

12. Mind the gap…
Teams were asked to refer all patients who were perceived to
be dying (Monday –Friday)…
Reason for referral Identified by
Referring team
Identified by HPCS
on initial assessment
Routine (no other reason
identified)
2 1 (-1)
Symptom Control 9 14 (+5)
Psychological support 3 9 (+6)
Community support on
discharge
3 4 (+1)
Hospice transfer 5 3 (-2)
Total 22 31
12

13. Initial Assessment: Symptoms
Symptom Identified By
Referring Team
Identified by HPCS on
initial assessment
Dyspnoea 7 with 2 resolved ( 5) 6 (+1)
Agitation and restlessness 3 with 2 resolved (1) 8 (+7)
Pain 5 with 3 resolved (2) 7 (+5)
Respiratory tract secretions 6 with 2 resolved (4) 5 (+1)
Nausea and vomiting 0 1 (+1)
Seizures 1 ongoing 1
Confusion 1 resolved 0
TOTAL 23 (10 symptoms managed by primary
team on first assessment by HPCT )
28
Mind the gap…
13

14. Mind the gap…
Initial Assessment: Psychological need
Psychological need Identified By
Referring Team
Identified by HPCS on initial
assessment
No specific need 14 6 (-8)
Patient 0 3 (+3)
Family 2 with 1 resolved 8 (+7)
Patient & Family 0 3 (+3)
TOTAL 2 14
14

15. Mind the gap…
Initial assessment: symptoms and changes suggested
Symptom Medication Changes Non pharmacological
suggestions
Regular PRN
Pain 4 6
Nausea and vomiting 4 4
Respiratory tract
secretions
4 5 3
Agitation and
restlessness
6 7 4
Dyspnoea 6 3 4
Other 1 1 2
Syringe Driver 7
TOTAL changes 32 26 10
15

16. Mind the gap…
Initial assessment: Information/ education needs
Need identified Family Patients Staff
Nil needs identified 3 14 4
Re End of life
9 2 5
process
Re Medication
management
10 2 10
Re Ethical
issues/concerns
6 1 5
Other 1
Total 25 6 20
16

17. On Review (recommended for all within24hrs)
 Suggested medication changes had been followed for 8
patients reviewed (8 patients had either died or transferred to
community care).
 Further medication changes were required regarding
the management of:
 Pain (1),
 Nausea and vomiting (1),
 respiratory tract secretions (2),
 Agitation and restlessness (1) and
 Dyspnoea(2)
 Recommended the use of a continuous subcutaneous
infusion of medications via a syringe driver for (3).
17

18. So - How are we doing?
 Those on/not on LCP on first assessment...
 HPCS identified higher levels of symptom burden and
psychosocial need and addressed information needs.
 Review…
 Staff clearly indicate a desire for more support especially
around recognising dying, conversations with patient,
family and whānau and alternative places of care
 Comments from staff indicate difficulties integrating into
their acute workload
 Recognising dying can be complicated… especially when
it’s a non malignant diagnosis.
 33% malignant 77% non malignant diagnosis 2013/14 –
similar in audit (5/11)
 Education (medical and nursing), resources/link nurses
18

19. Discussion
 Palliative care - delivered equitably, in a timely manner,
regardless of diagnosis or place of care…
(NZ Palliative Care Strategy 2001)
 Inter dependence between primary teams and HPCS
1. ‘The Gap’ - palliative care staff ’s assessment &
generalist colleagues…
2. Some times the gap is language and understanding
3. What is a reasonable expectation for generalist staff
to manage at the end of life care?
4. Risk of deskilling…
19

20. Discussion
 How is a HPCS resource best deployed?
 Where/when in the trajectory
 With whom
 Patients,
 Family, whānau
 Staff
 Prioritise EOL care
 The need for a plan of care to guide and support staff remains
 UK reports stress identifying dying, symptom management,
regular review, communication, joint decision-making, naming
the uncertainty…
 Reflects key element from our local enquiries
 Reflects key elements from Robinson et el (2013) lit review of
what is known of patients and families experiences of palliative
care in hospital
20

21. 21

22. Bibliography
 Broad, J.B, Gott, M., Kim, H., Boyd, M., Chen. H., Connolly, M.J. Where do people die? An international comparison of the percentage of deaths
occurring in hospital and residential aged care settings in 45 populations, using published and available statistics.
 International Journal of Public Health 58(2):327 Apr 2013.
 Clark, J. B., Sheward, K., Marshall, B., & Allan, S. G. (2012). Staff Perceptions of End-of-Life Care following Implementation of the Liverpool Care Pathway for the Dying
Patient in the Acute Care Setting: A New Zealand Perspective The Journal of Palliative Medicine, 15(4): 468-473.
 Gott, M., Frey, R., Raphael, D., O’Callaghan, A., Robinson. J., Boyd, M. (2013) Palliative care need and management in the acute setting in hospital setting: a census of
one New Zealand Hospital BMC palliative care http://www.biomedcentral.com/1472-684X/12/15
 Gott, M., Seymour, J., Ingelton, C., Gardiner, C., Bellamy, G. (2011). That’s part of everybodys job: The perspectives of health care staff in England and New Zealand on
the meaning and remit of palliative care. Palliative Medicine. 26 (3) 232-241.
 Ministry of Health (2001). The New Zealand Palliative Care Strategy. Wellington. Author.
 Ministry of Health (2009).Gap analysis of specialist palliative care in New Zealand. Wellington. Author.
 Neuberger, J. et al. (2013). Independent review of the Liverpool care pathway. More Care Less Pathway; A review of the Liverpool care Pathway. Sourced from:
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf
 Robinson, J., Gott, M., & Ingleton, C. (2014). Patient and family experiences of palliative care in hospital: What do we know? An integrative review. Palliative Medicine,
28(1), 18-33.
 Royal College of Physicians & Marie Curie Palliative Care Institute Liverpool. (2014). National Care of the Dying Audit for Hospitals, England. National Report. May.
Authors. https://www.rcplondon.ac.uk/resources/national-care-dying-audit-hospitals
 Sheward, K., Clark, J B., Marshall, B., Allan, S G., (2011) Staff perceptions of End of life care in acute care: A New Zealand perspective. The Journal of Palliative
Medicine. 14(5) p623-630.
 The Leadership Alliance for the Care of Dying People. (2014). One Chance to get it Right: Improving people experience of care in the last days and hours of life.
(http://www.england.nhs.uk/2013/08/30/resp-lcp/
22