PALLIATIVE MEDICINE Nigel Sykes St Christopher s Hospice London UK

Transcription

1 Guttmann Conference June 2013 PALLIATIVE MEDICINE Nigel Sykes St Christopher s Hospice London UK

2 Palliative Medicine What is Palliative Medicine and where did it come from? The extent and organisation of Palliative Care services today A couple of illustrative cases The interface of Palliative Care with services specialising neurological conditions Discussion

3 Some terms: Palliative Care Specialist Palliative Care Generic Palliative Care Palliative Medicine Hospice

4 The WHO Definition of Palliative Care Palliative Care: provides relief from pain and other distressing symptoms integrates the psychological and spiritual aspects of care helps patients live as actively as possible until death affirms life and regards death as a normal process neither hastens nor postpones death supports the family to enable them to cope during the patient s illness and their own bereavement

5 David Tasma Dame Cicely Saunders Founder of the hospice and palliative care movement

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7 UK Palliative Care Provision A specialist service provided mostly outside the NHS but free to its users British citizens give over 300m a year to fund Palliative Care 223 hospices, of which 165 (74%) are voluntary 3200 beds of which 2570 (80%) are voluntary 291 Home care teams 311 Hospital support teams 275 Day hospices (Hospice Information, 2012) To find your nearest palliative care service go to: Click the Find a hospice link

8 Specialist Palliative Care Service Characteristics (Specialist Palliative Care Minimum Data Set 2012) Mean length of stay in a specialist palliative care bed is about 13 days Discharge rate is 45% But only about 10% of specialist palliative care patients are in a specialist palliative care bed: 60% are in the community Median care duration is 3 months 30% are in general hospital beds

9 Case A 50 year old man with a long history of paraplegia from spinal cord injury Multiple admissions with pressure sores Haematuria led to a diagnosis of bladder cancer Cystectomy performed but metastases diagnosed within weeks Referred to palliative care where he lived but deteriorated rapidly before he was seen GP sought SCIC admission, but this was thought inappropriate Local hospice said they could not support his needs So, admitted acutely to local hospital where he died quite suddenly the following week

10 How quickly can palliative care see referrals? When should patients with nontreatable disease be referred? What settings are appropriate for rapid deterioration and not managing at home?

11 Case B 75 year old man with a long history of spinal cord injury Prolonged admission with a pressure ulcer Diagnosed with metastatic malignant melanoma No active treatment available. Patient frail and deteriorating Did not want to go a new hospital locally or to be at home Consequently, terminal care provided within SCIC

12 Not an appropriate use of a SCIC bed Not the SCI team s field of expertise How could this situation have been handled differently? What forms of shared care are available?

13 Non-cancer Palliative Care Non-cancer conditions have always had a part in palliative care St Christopher s first patient in July 1967 did not have cancer The 1992 SNMAC/SMAC report wanted more access for non-cancer conditions In 1996 just 3% of specialist palliative care inpatients did not have cancer In 2012 non-cancer diagnoses made up: 11% in-patients 14% community patients 22% hospital patients

14 National Service Framework for Long Term Conditions (2005) Claims access to palliative care for people with long term neurological conditions (LTNC) Highlights need for support to the end of life for people with LTNC from neurology, rehabilitation and palliative care services

15 How do neurology, rehabilitation and palliative care services relate to each other? A cross-sectional postal survey Parallel questionnaires sent to consultants in neurology, rehabilitation and palliative through their specialist societies Turner-Stokes L, Sykes N, Silber E, et al. From diagnosis to death: Exploring the interface between neurology, rehabilitation and palliative care in the management of people with long-term neurological conditions. Clinical Medicine, 2007; 7:

16 Response rates Palliative physicians 149/304 (49%) Rehabilitation physicians 53/116 (46%) Neurologists 82/474 (17%)

17 Involvement with LTNC Neurologists 100% Palliative physicians 90% Rehabilitation physicians 89% A selected group, but likely to be representative of those actually engaged in care of LTNC

18 End of life support Provided by: 100% palliative physicians 73% neurologists 53% occasionally, 20% often. 60% of rehabilitation physicians 47% occasionally, 13% often.

19 Care for sudden-onset conditions e.g. stroke, acute brain injury Neurology (n=81) 65% Rehabilitation (n=47) 89% Palliative medicine (n=134) 17%

20 Care for intermittent conditions e.g. relapsing-remitting MS, epilepsy Neurology 90% Rehabilitation 72% Palliative medicine 19%

21 Care for progressive conditions e.g. MND, MSA, PSP Neurology 93% Rehabilitation 79% Palliative medicine 63%

22 Core elements of your service 100% 80% 60% 40% 20% % neuro %PC %rehab 0% Ax/diagnosis Disease control Symptoms Therapy Aids/equipment Co-ordination Social/Psych Spiritual Death Bereavement

23 Overlaps Diagnosis Neurology and Rehabilitation both think they do it But some diagnoses emerge over time Symptom control Everyone thinks they do it But maybe not all symptoms are managed equally well by everyone

24 Was there agreement about the core elements of each other s services? More or less, but: Do rehabilitation physicians have a major role in assessment and diagnosis? Rehab say yes Neurologists say no Do neurologists have a major role in therapy and symptom control? Rehab say no Neurologists say yes Everybody agrees palliative medicine does symptom control, dying and bereavement

25 How easy is it to access specialist palliative care in hospitals? 88% palliative physicians thought this was easy but only 65% neurologists and 62% rehabilitation physicians agreed (p<0.0001)

26 How easy is it to access specialist palliative care in the community? 77% palliative physicians thought this was easy but only 31% neurologists and 45% rehabilitation physicians agreed (p<0.0001)

27 Lack of coordination between services Rehabilitation and Neurology complained of: Lack of access to specialist palliative care, which in any case had: Insufficient facilities An emphasis on cancer Specialist palliative care complained of: Lack of referrals from Rehabilitation and Neurology

28 Lack of coordination between services Palliative physicians reported lack of resources and/or training to take on LTNC Rehabilitation physicians saw palliative care as insufficiently skilled and lacking in therapists to cater for LTNC Both recognised that LTNC time-scale often fits badly with the working pattern generally required in palliative care

29 Neurology Diagnosis Investigation Disease modification Rapidly progressive Conditions Active disease management Preventing long-term complications Symptom control Advance Care Planning Rehabilitation Physical management Cognitive/communication deficits Profound brain injury Neuro-palliative Rehabilitation Palliative care End of life care Dealing with loss Spiritual support Turner-Stokes L, Sykes N, Silber E, Sutton L. Concise Guidance to Good Practice (Number 10): Long-term neurological conditions: management at the interface between neurology, rehabilitation and palliative care. London: Royal College of Physicians, 2008.

30 Managing shortness of breath Assess to identify cause of breathlessness prognosis Acute SOB with potential for reversal e.g. lung pathology - PE, pneumonia acute respiratory muscular paralysis Manage aggressively with ventilation if necessary Irreversible breathlessness in known diagnosis e.g. MS - pneumonia MND respiratory muscle failure Relief of respiratory distress Manage excess secretions Terminal phase palliation Combination: Opioid + Midazolam +Glycopyrrolate Benzodiazepine especially if anxious Or Low dose opioid Start Oromorph 2.5 mg 4-hourly and work up (Sustained release preparations less effective in this context) Breathing exercises Relaxation Consider assessment for non-invasive ventilation Anticholinergic if infection or cardiac failure ruled out Hyoscine patch or sublingual Glycopyrrolate s.c. or oral Amitriptyline elixir 5-10 mg tds Atropine - oral (use eye-drop solution) Turner-Stokes L, Sykes N, Silber E, Sutton L. Concise Guidance to Good Practice (Number 10): Long-term neurological conditions: management at the interface between neurology, rehabilitation and palliative care. London: Royal College of Physicians, 2008.

31 Life circles : the relationship of neurology, rehabilitation and palliative care for people with long term neurological conditions

32 Thank you for Listening