1. Practicalities of Palliative Care
Dr Sarah Holmes
Consultant in Palliative Medicine

2. Identifying Patients

3. Three triggers for Supportive/ Palliative Care
1. The surprise question:
‘Would you be surprised if this patient were to die
in the next 6-12 months?’
2. Choice:
The patient with advanced disease makes a choice for comfort care only eg refusing renal transplant
3. Clinical indicators:
Specific to each of the three main end of life groups - cancer, organ failure, elderly frail/dementia

5. Boyd K, Murray SA. Recognising and managing key transitions in end of life care.
BMJ 2010; 341:

7. Transition 1: Would my patient benefit from supportive and palliative care?
Transition 2: Is my patient reaching the last days of life?

8. Supportive and Palliative Care Indicators tool
Ask
Does this patient have an advanced long term condition, a new diagnosis of a progressive life limiting illness, or both?
Would you be surprised if this patient died in the next 6-12 months?

9. Supportive and Palliative Care Indicators Tool
(2) Look for one or more general clinical
indicators
Performance status poor or deteriorating
Progressive weight loss (>10%) over past 6 months
2 or more unplanned admissions in last 6 months
Patient is in a nursing /care home, or needs more care at home

10. Supportive and Palliative Care Indicators Tool
(3) Now look for two or more disease
related clinical indicators

11. Heart disease NYHA Class IV, severe valve disease or extensive CAD
Breathless/chest pain at rest or on minimal exertion
Persistent symptoms despite optimum tolerated therapy
Renal impairment (eGFR,30ml/min)
Systolic BP<100 or pulse>100
Cardiac cachexia
2 or more acute episodes needing iv treatment in past 6 months

12. Renal disease Stage 5 CKD (eGFR<15ml/min)
Conservative renal management due to multi-morbidity
Deteriorating on RRT
Not starting dialysis following failure of a renal transplant
New life limiting condition or renal failure as a complication of another condition or treatment

13. Respiratory disease
Severe airways obstruction (FEV<30%) or restrictive deficit (VC<60%, transfer factor<40%)
LTOT
Breathless at rest or on minimal exertion between exacerbations
Persistent severe symptoms despite optimal therapy
Symptomatic heart failure
BMI<21
More emergency admissions for infective exacerbations and/or respiratory failure

14. Liver disease Advanced cirrhosis with one or more complications
Serum albumin < 25 and prothrombin time raised or INR prolonged
Hepatocellular carcinoma

15. Cancer
Performance status deteriorating due to metastatic cancer and/or comorbidities
Persistent symptoms despite optimal palliative oncology treatment
Too frail for oncology treatment

16. Neurological disease
Progressive deterioration in physical and/or cognitive function despite optimal therapy
Symptoms that are complex an difficult to control
Speech problems; increasing difficulty communicating; progressive dysphagia
Recurrent aspiration pneumonia; breathless or respiratory failure

17. Dementia Unable to dress, walk or eat without assistance
Unable to communicate meaningfully
Increasing eating problems; receiving pureed/soft diet or supplements or tube feeding
Recurrent febrile episodes or infections; aspiration pneumonia
Urinary or faecal incontinence

19. Clinical indicators for terminal care
Q1. Could this patient be in the last days
of life?
Confined to bed/chair or unable to self care
Difficulty taking oral fluids or not tolerating artificial feeding/hydration
No longer able to take oral medication
Increasingly drowsy

20. Clinical indicators for terminal care
Q2. Was this patient’s condition expected to deteriorate in this way?
Q3. Is further life-prolonging treatment inappropriate?
Q4. Have potentially reversible causes of deterioration been excluded?

21. Coordinating Care

22. Gold Standards Framework
Framework to improve coordination and delivery of palliative care in the community
Recommended:
NICE Guidance 2004
End of Life Care Strategy 2008

23. Goals of GSF Patients are enabled to have a ‘good death’
1) Symptoms controlled
2) Preferred place of care
3) Fewer crises
4) Carers feel supported, involved, satisfied
5) Staff confidence, teamwork and communication improve
Discuss subjectivity of “good death”

24. The 7 “c”s

25. Gold Standards Framework
C1 Communication:
Register – not just a list – “surprise question”, PHCT
discussion, traffic light system, Advanced Care Planning
C2 Co-ordination:
Identified GSF coordinator eg DN, named GP, patients
know they are “Gold”, PHCT discussion
C3 Control of symptoms:
Education, assessment tools, anticipating problems, links
with Specialists
Community based framework to improve quality in palliative care. Included in NHS EoL strategy as recommended practice.
Difficulties in est. prognosis – and more so in non-malignant illness. “Surprise” question.
If this leads to large registers can adopt traffic light system to prioritise patients eg stable, changing and regular contact
Buddy system to enable part-time GPs to participate

26. C7 Care in the dying phase:
C4 Continuity:
OOH Handover Form, resuscitation status
C5 Continued learning:
Opportunities PHCT, Critical Events Review, preferred vs actual place of death
C6 Carer support:
National Carer’s Strategy, Risk assessment for bereavement support, Advanced Care Planning
C7 Care in the dying phase:
LCP, Gold Boxes, Priority Patient status

27. Advance Care Planning

30. Joint District DNAR policy

31. Current Problems with CPR
Both professionals and the public understanding of CPR and its success rate remains misunderstood
Some patients are having CPR attempted inappropriately and as a result death can be undignified and traumatic
Dying patients are being transferred back to hospital when their preferred place of death is home
Patients wishes and preferences are not always clarified and respected (advance decisions to refuse treatment)
Good communication and consistent documentation is poor
All care settings including ambulance service have their own documentation to record DNACPR

32. Yorkshire & Humber SHA
Yorkshire and Humber SHA are working together with a team of clinicians and providers to agree a regionally co-ordinated approach to improve patient experience, dignity and quality of care in patients for whom CPR is inappropriate or to uphold an advance decision
To be rolled out across Yorkshire & Humber in a phased approach over next 6-12 months. B & A launch September 20th 2010

33. Policy objectives
Avoid inappropriate CPR attempts and allow natural death
Encourage and facilitate good communication with patients and relevant others
Clarify that patients and relevant others will not be asked to decide about CPR when clinicians are as sure as they can be that CPR would not be successful and therefore is not a treatment option
Ensure that a DNACPR decision is communicated to all relevant healthcare professionals so that the transfer of patients between services does not compromise dignity, quality of care or patient choice

34. Documentation
ONE single form to record DNACPR decisions which can be transferred across all care settings (home, hospital, hospice, care home including ambulance)
If being transferred from hospital to another care setting:
original form will follow patient
copy of the form MUST be taken and filed in medical notes (for audit purposes)
Patients may be admitted to hospital with a completed form
Decision will be recorded by GP on the new End of Life Register within SystmOne (electronic patient record) as well completed form remaining with patient

36. How to have the conversation..??

39. Referral criteria
The patient has active, progressive and usually advanced disease for which the prognosis is limited (although it can be several years) and the focus of care is quality of life

40. Referral criteria
AND
The patient has one or more of the following needs which are unmet:
Uncontrolled or complicated symptoms
Specialised nursing/therapy requirements
Complex psychological/emotional issues
Complex social/family issues
Difficult decision making about future care

41. Role of the Macmillan Nurse
See criteria for referral to Specialist Palliative Care services – needs which cannot be met by existing care providers
Symptom control
Psychosocial concerns
Spiritual concerns
Patient assessed either at home or as an outpatient if preferred (2 working days urgent, 5 non-urgent).
Interventions may include:
Advice on symptom management, may prescribe
Psychosocial support/ counselling
Referral to other services (lymphoedema, benefits advice, psychology, Fast Track, Hospice at Home, Marie Curie hospice or day therapy)
Contact may be brief or ongoing depending on complexity

42. Hospice services Outpatients Day therapy COPD group
Heart failure group
Art group
Inpatients
Complementary therapy
Bereavement

43. Useful Resources www.goldstandardsframework.nhs.uk
Treatment and care towards the end of life: good practice in decision-making, GMC 2010