Current Clinical, Ethical and Service Issues in Palliative and End of Life Care

1
Current Clinical, Ethical and Service Issues in
Palliative and End of Life Care

• Dr Alex Nicholson, FRCP
• Consultant in Palliative Medicine, JCUH
• Palliative Care Clinical Lead, NECN

2
Overview

• Context of service developments and initiatives
• Ethical issues
• Relevance of mental capacity act
• Advance care planning
• Clinical focus
• Revised palliative care guidelines
• Ten top tips

3
Service development initiatives

• NHS End of Life Care Programme 2004-2007
• Improving Outcomes Guidance (NICE 2004)
• Our NHS, our future review (Darzi 2007)
• High quality care for all next stage review
  final report (Darzi 2008)
• NHS End of Life Strategy (DoH 2008)

4
End of life care programme

• 2004-2007
• GSF
• LCP
• PPC

5
GSF

• GSF primary care programme
• GSF in care homes programme
• End of life care support programme

6
Improving supportive palliative care for adults
with cancer the manual (March 2004)

• Executive summary
• people affected involved in developing cancer
  services
• good communicationpeople affected involved in
  decision making
• information
• offered a range of physical, emotional,
  spiritual and social support
• services to help people living with the
  after-effects of cancer
• services to improve their quality of life
• support for people dying from cancer
• needs of family and other carers should be met
• trained workforce

7
Improving supportive palliative care for adults
with cancer the manual (March 2004)13 topic
areas/chapters

• Coordination of care
• User involvement
• Face-face communication
• Information provision
• General palliative care, including care of the
  dying
• Specialist palliative care

• Psychological support
• Social support
• Spiritual support
• Rehabilitation
• Complementary therapies
• Services for families/carers including
  bereavement support
• Research

8
South Tees Locality Supportive Palliative Care
Group

• Representation
• Primary secondary care
• Medical, nursing and AHP
• Voluntary and NHS
• Links to NECN palliative care groups
• Clinical
• Lead nurses
• AHP
• Psychology
• Steering group
• Workforce development

• Action plan linked to IOG
• 2 monthly review
• Current priorities
• Robust 24hr advice service
• Equitable AHP provision
• Access to complementary therapies
• Spiritual support
• Minimum education requirements

9
End of Life Care Strategy

• The most important objective is to ensure
  that peoples individual needs, their priorities
  and their preferences for end of life care are
  identified, documented, reviewed, respected and
  acted upon wherever possible. Now that message
  has to go out everywhere within the NHS and
  thats the starting point for everything else.
• Alan Johnson, Health Secretary on Today, 16th
  July 2008

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Challenges

• Clinicians difficulties in initiating
  discussions about death and dying
• Inadequate assessment and care planning
• Poor coordination of care
• Suboptimal services in hospitals, care homes and
  community
• Inadequate involvement and support of carers
• Lack of dignity and respect

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North East

• Place of death
• 60 in hospital
• 20 at home
• 15 in care home (residential or nursing)
• 5 in other places including hospices, prisons
• Cancer networks ranked 2nd and 3rd for
  palliative care need out of 34 national cancer
  networks (pre 07/08 mergers)
• 95 uptake of end of life care processes in
  primary care
• Less than 10 use of advance care planning

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North East SHAEnd of life Clinical Working Group

• Defining end of life
• would you be surprised if this patient died in
  the next 6-12 months?
• Care for final phase of life and into bereavement
• A broad remit
• Pain other symptoms
• Psychological
• Social
• Spiritual
• Practical

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Four areas of aspiration

• Identification of people approaching end of life
• Identification improved management of last days
  of life
• Better death logistics procedures
• Care after death

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1. Identify people approaching end of life

• Proactive approach
• Asking the surprise question
• Names on palliative care registers
• Access to specialist holistic assessment
• Identification of key worker
• Sensitive discussion of care preferences
• Multi-disciplinary team meetings to monitor
  plan care
• Commissioning

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2. Improve management of last days of life

• Regular review and re-assessment
• Attention to spiritual and psychological needs
• Reviewing advance care plans/advance decisions
• Determining preferred priorities for care
• Rationalising medical nursing interventions

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3. Better death logistics procedures

• Clear and consistent policies for verification of
  expected death
• Support for lay and professional carers
• Clear and consistent communication and knowledge
  of contact details

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4. Care after death

• Accurate and culturally appropriate practice of
  care after death
• Practical advice
• Sensitivity and dignity in procedural issues
  collecting paperwork possessions
• Sharing information with relevant professionals
• Information on grieving and available help
• Bereavement risk assessment and follow-up

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Making it happen

• SHA group of lead commissioners meet with Prof
  Edwin Pugh
• Prof P chairs an SHA clinical reference group
  which informs the commissioners group
• Clinical reference group linked to a wider
  virtual group of specialists from every field, to
  influence and be influenced
• Localities configure groups to put developments
  in place

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and also

• GMC end of life treatment and care good practice
  in decision-making
• Current consultation until 13th July 2009
• www.gmc-uk.org/end_of_life_care
• Teams without walls
• Enabling partnership between generalists and
  specialists
• Kings Fund, RCGP RCGP

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Ethical issues

• Mental capacity act 2005
• Advance care planning

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Mental Capacity Act 2005

• Royal assent 7th April 2005
• Partially in force April 2007
• Fully in force 1st October 2007

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Advance decisions

• A competent adults anticipatory refusal of
  consent remains binding and effective
  notwithstanding that (s)he has subsequently
  become incompetent
• High Court tested

23
Advance decisions

• Previous forms of advance statement or living
  will are important as indices of past wishes
  of a person
• Their value lies mostly now in determining best
  interests
• advance decision under terms of MCA 2005 is a
  special type of advance statement

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Key characteristics 1 (section 24, MCA 2005)

• Can only be made by person 18 yrs or over
• Must have capacity at time made
• To qualify must specify treatment to be refused
  albeit in lay terms
• May specify circumstances

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Key characteristics 2

• Can be changed or withdrawn by person provided
  have capacity
• Withdrawal/partial withdrawal does not need to be
  in writing can be done by any means
• Alteration need not be written unless refers to
  advance decision to refuse life sustaining
  treatment for which formalities apply

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Advance Decisions

• Legally binding if meet the requirements of the
  MCA 2005
• Validity
• Applicability
• even if life is at risk

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Validity

• Provided not withdrawn or overridden by
  subsequent LPA
• Invalid if person acts in a way inconsistent with
  advanced decision remaining the fixed decision

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Applicability

• NOT if
• person has capacity at time decision is required
• circumstances or treatments not specified
• reasonable grounds to believe current
  circumstances not anticipated and, if had been,
  would have affected decision

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Life sustaining treatment

• AD does not apply to life sustaining treatment
  unless qualified/verified by a statement that the
  decision applies even if life is at risk
• life also means life of an unborn child
• This decision statement must be
• Written (not nec by person can be in med records
  either written or electronic)
• Signed (by person or another on their instruction
  and in their presence)
• Signature witnessed

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the practical implications have been little
considered

• Drafting an advance decision
• time-consuming
• complex
• concerns about ambiguity, interpretation and
  application
• Concise guidance to good practice
• No.12 Advance care planning (Feb 2009)
• www.adrtnhs.co.uk

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Clinical focusTen top tips
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1. Cicely Saunders total pain
Physical
PAIN
Spiritual
Social
Psychological
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2. Complex painsopioid poorly or partially
responsive
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3. Relative opioid potencies
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4. Constipation

• Pre-empt, prevent, prescribe
• 1st line stimulant senna
• 1st line softener sodium docusate
• 1st line combination co-danthrusate or
  co-danthramer

36
5. Logic to nausea/vomiting

• Numerous anti-emetics in BNF
• How to choose?
• This..

37
From Robert Twycross, 1997, p190 Symptom
Management in advanced cancer
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or this?
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6. Corticosteroids

• If starting, write and review a plan to reduce
  and stop
• Consider indication and dose
• Steroid card if treatment gt 3 weeks
• Gradual reduction (2mg every 5 days) if course
  exceeds 5 days

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7. Spinal cord compression

• Act promptly on clinical suspicion.
• Plain X-rays are normal in 10-20 cases.
• Do not wait for LATE SYMPTOMS/SIGNS.
• Pain, especially with a root or girdle
  distribution, exacerbated by coughing or
  straining and not relieved by rest, frequently
  precedes neurological signs.
• Any cancer patient with severe back pain in a
  root distribution should be considered at risk of
  spinal cord compression.

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7. Spinal cord compression

• Give dexamethasone 16mg ASAP (by any route) (PPI
  )
• Give analgesia to permit transfer
• Discuss with patients known cancer specialist
• Admit, after discussion, via MAU
• Document neurology in accompanying letter

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8. Pre-emptive prescribing

• Patients going on end of life pathway should all
  be prescribed as required medication
• Analgesic appropriate opioid dose
• Antiemetic - levomepromazine
• Anti-secretory hyoscine butylbromide
• Anxiolytic - midazolam

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9. Which types of hyoscine?

• Both available as injectable formulations
• Hyoscine hydrobromide (Kwells, Scopoderm patches,
  measured in microgrammes or small numbers of mgs)
• Crosses blood/brain barrier
• Causes sedation, possible paradoxical agitation
• Hyoscine butylbromide (Buscopan, measured in mgs)
• No cerebral effects

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10. Use the guidelines

• Specialist advice for generalist use
• NECN-wide approval
• Free
• All GPs and community nursing staff will have a
  copy