1

How do we deliver on palliative care aspirations at the end of life in the acute setting?

Dr Jean Clark1, 2, Karen Sheward2, Dr Joy Percy2, Celine Collins1, Dr Simon Allan1, 2

Arohanui Hospice1, MidCentral Health2,

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).

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).

4

Acute care: Local contextPrimary providers and hospital palliative care services

(HPCS) have an interdependent relationshipIn 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.

5

How are we doing? – we wanted & needed to know

LCP use from 2006 onward –following pilotIncreasing 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

1. SurveyHow helpful would it be to routinely have the

hospital palliative care team involved when patients are identified as dying?

Profession

Not helpful1 2

Helpful

34

Extremely helpful5

Not applicable

Not sure

HO 11/14

1 3 6 1Nurses 50/144 (2 NR)

3 5 40

? 1 1

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

8

House officers -11All 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.

9

Nursing respondents -50All 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).

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.

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.

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 HPCSon 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

Initial Assessment: Symptoms Symptom Identified By

Referring TeamIdentified 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…

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

Mind the gap…

Initial assessment: symptoms and changes suggested

Symptom Medication Changes Non pharmacological suggestions

Regular PRNPain 4 6Nausea and vomiting 4 4Respiratory tract secretions

4 5 3

Agitation and restlessness

6 7 4

Dyspnoea 6 3 4Other 1 1 2Syringe Driver 7TOTAL changes 32 26 10

            Mind the gap…

Initial assessment: Information/ education needs

Need identified Family Patients Staff

Nil needs identified 3 14 4

Re End of life process

9 2 5

Re Medication management

10 2 10

Re Ethical issues/concerns

6 1 5

Other 1

Total 25 6 20

Mind the gap…

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).

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

19

DiscussionPalliative 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 HPCS1. ‘The Gap’ - palliative care staff’s assessment &

generalist colleagues…2. Some times the gap is language and understanding3. What is a reasonable expectation for generalist

staff to manage at the end of life care? 4. Risk of deskilling…

20

               

                   

Discussion

How is a HPCS resource best deployed?Where/when in the trajectoryWith whom

Patients, Family, whānau Staff

Prioritise EOL care The need for a plan of care to guide and support staff remainsUK 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

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/