Role of Specialist Palliative Care Services in Patients Severely Affected by MS

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Role of Specialist Palliative Care Services in
Patients Severely Affected by MS

• Dr Linda Wilson
• Consultant in Palliative Care
• Airedale

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National Service Framework forLTC Quality
Requirement 9

• People in the later stages of long-term
  neurological conditions are to receive a
  comprehensive range of palliative care services
  when they need them to control symptoms, offer
  pain relief, and meet their needs for personal,
  social, psychological and spiritual support, in
  line with the principles of palliative care.

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• Do patients with advanced MS have specialist
  palliative care needs?
• If so, what are they?
• Can specialist palliative care services meet
  those needs?
• If so, when should SPC become involved?

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Do people with MS have palliative care needs?

• People with advanced MS and other long term
  conditions have unmet health and social needs in
  the last year of their lives
• Addington-Hall et al Pall Med 12(6)1998
• 3 year research project funded by MS Society,
  Kings College Hospital and Dept. of Palliative
  Care Policy, Kings College
• 32 people severely affected by MS

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Kings Study

• Several broad themes identified
• Significant symptom burden- Spasm, Pain,
  Secretions, Bowel management, Dysphagia, Nausea
• Distress associated with Loss and change-need for
  psychosocial support
• Provision of services and care
• Lack of continuity and coordination of care
• Lack of information about services, aids and
  adaptations, welfare benefits
• Need to address end of life issues-advance care
  planning
• Underpinning theme of fighting for everything

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Symptom Burden in Advanced Disease
1. Solano, Gomes, Higginson 2006 2. Kings
College London MS Pall. Care Project
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• Do patients with advanced MS have specialist
  palliative care needs? Yes, but not well
  researched
• If so, what are they? Symptom control,
  psychosocial care, advance care planning and end
  of life issues
• Can specialist palliative care services meet
  those needs?
• If yes, when should SPC become involved?

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• Traditionally, relatively small numbers of people
  with chronic neurological conditions access
  specialist palliative care services
• Based on population figures, prevalence of MS in
  Bradford, Airedale and Craven is more than 600
  individuals (?900)
• How many of these are severely affected?
• Need is potentially large but unknown at present
• In 2006 SPC saw 10 individuals with MS (1.6 of
  600)

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10 individuals

• 12 inpatient admissions
• 7 received community team support
• 2 attended weekly Day Therapy

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Challenges in MS

• Protracted disease and course is variable and
  can be difficult to predict
• Long term involvement- Some will benefit from
  ongoing SPC follow up but others may only have 1
  off consultations/joint assessments or shorter
  periods of involvement
• ???Service overload
• Linking with other services-when do we get
  involved

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When should specialist palliative care get
involved?

• The surprise question
• Would you be surprised if this patient were to
  die in the next 6-12 months?
• -an intuitive question integrating co-morbidity,
  social and other factors.
• Combined with..

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Eligibility criteria

• 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 or family issues.
• Difficult decision making about future care.

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Evolving Model Of Palliative Care
Cure/Life-prolonging Intent
Palliative Care
Time
Cure/Life-prolonging Intent
Palliative Care- physical,emotional, social,
spiritual
Bereavement
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Advanced planning

• Competency/Communication-MCA
• Further antibiotics
• PEG feeding tube
• Place of care
• CPR/Ventilation
• Advance statements and advance decisions

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End of Life Care in MS

• 50 deaths related to complications of MS usually
  sepsis
• Others as general population-heart disease,
  tumours, etc. (high suicide rate)
• Symptoms at end of life common to most disease
  areas, the same principles as end of life care in
  other situations

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End of life care in MS

• NHS End of Life Initiative -government initiative
  to improve quality of end of life care
• Increasing focus on enabling people to die in
  their preferred place of care
• Promotes use of Gold Standards Framework,
  Liverpool care Pathway for the Dying to ensure
  best practice in all settings (home, care home,
  hospital, hospice)

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• Do patients with advanced MS have specialist
  palliative care needs? Yes, but not well
  researched
• If so, what are they? Symptom control,
  psychosocial care, advance care planning and end
  of life issues
• Can specialist palliative care services meet
  those needs? Yes but careful selection required,
  short term involvement and then withdrawal
• If yes, when should SPC become involved? Surprise
  question and eligibility criteria

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Case Study 1

• 36 year old lady, secondary progressive MS, lives
  with partner as main carer.
• 3 school age children fostered
• Bed bound and not eating or drinking
• High level of personal neglect and refusing help
  of paid carers
• Reluctant to engage with health professionals
  except a social worker who she had a good
  relationship with
• Adamant wanted to stay at home

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• Palliative care joint visit with social worker
• Disclosed fear that if admitted to hospital would
  not return home
• Short term hospice admission negotiated for
  symptom control and to assess competence
• Found to be competent and developed confidence
  that her wishes to be cared for at home would be
  respected
• Allowed paid carers to come in
• Continued to dislike hospital but accepted
  hospice admission to manage acute infective
  episodes
• Died during 3rd septic episode in hospice
• Bereavement care for partner and children

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Core Indicators Of Advanced Disease

• Recent, significant functional decline (loss of
  ADLs)
• Dependence in 3 ADLs or more
• Multiple co-morbidities
• Weight loss
• Serum albumin lt 25 g/l
• Reduced performance status / Karnofsky score
  (KPS) lt 50
• Severe progression of disease in recent months
• Recent increase in episodes of hospitalisation

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Deterioration
Exacerbations
End of life
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• Determining Capacity
• Decision specific
• Comprehend and retain information
• Believe in it
• Weigh up information, balance risks and arrive at
  a choice