Consultation Issues In Palliative care and Advanced Care Planning

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Consultation Issues In Palliative care and
Advanced Care Planning

• Pete Nightingale
• Macmillan GP

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Why Bother?

• I firmly believe that the skills we already
  use on a daily basis work very effectively in
  palliative care
• These skills have been refined and well taught
  in primary care and are in many ways more
  advanced than in any other speciality because we
  work in a time constrained environment

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The Disease - Illness Model (1984)
Patient Presents Problem
Gathering Information
Parallel search of two frameworks
Illness framework
Disease framework
Understanding patients experiences
Differential Diagnosis
Integration
Explanation Planning
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The Calgary -Cambridge Approach to Communication
Skills Teaching (1996)

• Initiating the Session
• Gathering Information
• Building the Relationship
• Explanation and Planning
• Closing the Session

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Gathering Information

• Information is needed from 2 perspectives-
• 1)The patients perspective-sometimes called the
  illness agenda
• 2)The healthcare workers perspective-sometimes
  called the disease agenda
• It is often most effective to deal with the
  patients agenda first

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Understanding The Patients Perspective

• Why bother?
• There is evidence for Morbidity reduction
  (Headache study group etc)
• There is an increase in patient satisfaction and
  compliance (Stewart(1984))etc.
• 20 of diagnoses are aided by eliciting patients
  ideas of causation (Peppiatt(1992))

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Two ways to discover Patients perspective

• Picking up verbal and non verbal cues
• Asking about-
• Ideas
• Concerns
• Expectations
• Effects
• Feelings

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Ways to pick up verbal and non-verbal cues

• Repetition of cues
• upset?
• something could be done?
• Picking up and checking out verbal cues
• you said you were worried it may be something
  serious-what did you have in mind?
• Picking up and checking out non-verbal cues
• Am I right in thinking you are quite upset about
  the explanation you have had in the past?

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• IDEAS
• what you think may have started this pain?
• is there anything you think that may have made
  this problem worse?

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Concerns

• Is there anything in particular about this
  disease that is worrying you?
• Some people with cancer find that they get
  worries about certain things-has that happened to
  you?

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Expectations

• Youve clearly given this some thought, what were
  the most important things you were hoping I may
  be able to do to help you with these problems?
• How do you see things developing from
• here?

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Effects

• How are these symptoms effecting your life at
  present?
• What do you find most helpful to support you
  when you have all this to deal with?

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Feelings

• Of particular importance in serious illness and
  palliative care-
• I sense you are upset/angry/tense, would you
  like to talk about it?
• Some people with cancer get depressed, or
  anxious-has that happened to you?
• Do you find there is anything you can still look
  forward to?

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How to stop a downward spiral

• I think I understand a little more of what you
  have been feeling. Lets look at the practical
  things we can do to help?

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Disease Agenda- 4 main symptom areas to remember

• Pain
• Nausea/vomiting
• Breathing
• Agitation/Confusion
• But please dont forget other areas for
  people not in the dying phase of their illness

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Disease Agenda

• Pain
• Nausea / vomiting
• Appetite
• Breathing/cough
• Bowels
• Bladder
• Mouth
• Swallowing
• Mobility
• Oedema
• Sensation in Legs
• Pressure areas
• Sleep
• Confusion

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Use of a Summary

• One of the most important information gathering
  skills
• It is the key method of ensuring accuracy
  because-
• 1)It demonstrates you are interested
  and have listened
• 2) It invites the patient to confirm or
  correct your interpretation
• 3)We can pause and formulate our thinking in
  both disease and illness frameworks

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Gathering InformationSummary

1. Check out I.C.E. with Effects and Feelings
2. Have a palliative care sieve of disease
   specific questions to ensure nothing important is
   missed
3. Summarise with the patient

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Building The Relationshipwith palliative care
patients
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Developing Rapport

• Again only 3 main skills to consider
• ACCEPTANCE
• EMPATHY
• SUPPORT

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Developing Rapport

• Acceptance
• Acknowledge legitimacy of patients view
• Non-judgementally accept view
• Value contribution
• Yes, but. can negate acceptance-try using
  silence
• Acceptance is NOT agreement

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EMPATHY

• Empathy can be learned
• It overcomes the patients isolation in their
  illness
• It is therapeutic in its own right
• Communicated by linking the I and the you
• I can see how difficult this pain is for you

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Sympathy and Empathy

• Empathy is seeing the problem from the patients
  position
• Sympathy is a feeling of pity or concern from
  outside the patients position

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Supportive approaches

• Concern
• Understanding
• Willingness to help
• Partnership
• Acknowledge coping efforts and self care
• Sensitivity

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Summary-Building the relationship

• Non verbal communication
• Demonstrates appropriate non verbal behaviour
• Use of notes
• Picks up Cues
• Developing Rapport
• Acceptance
• Empathy and support
• Sensitivity
• Involving the Patient
• Sharing thoughts
• Provide rationale
• Examination

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Breaking Bad News

• Basically involves finding out what the
  patient knows already and what else they want to
  know

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10 Step model (Based on the work of Peter Kay)

• Preparation
• Know all the facts before the meeting, find
  out who the patient wants present and ensure
  privacy

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2. What does the patient know?

• Ask for a narrative of events by the patient
  (eg What has happened since we last met? or
  what did they tell you after the endoscopy?)

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3. Is more information wanted?

• Test the waters, but be aware that it can be
  very frightening to ask for more information
  (e.g. 'Would you like me to explain a bit more?')

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4. Give a warning shot

• e.g. 'I'm afraid it looks rather serious',
  then allow a pause for the patient to respond.

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5. Allow denial

• Denial is a defence, and a way of coping. Allow
  the patient to control the amount of information.

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6. Explain (if requested)

• Narrow the information gap, step by step.
  Detail will not be remembered, but the way you
  explain will be.

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7. Listen to concerns

• Ask, 'What are your main concerns about this that
  we need to deal with?' and then allow space for
  expressions of feelings.

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8. Encourage ventilation of feelings

• I am very sorry about this news, this must be
  very hard for you, how are you feeling?
• This is the KEY phase in terms of patient
  satisfaction with the interview, because it
  conveys empathy.

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9. Summarise and plan

• Summarise concerns, plan treatment together,
  foster hope.

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10. Offer availability

• Most patients need further explanation (the
  details will not have been remembered)

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Are we in effect delivering Spiritual Care?

• Service given to others has been described as
  "love in action".
• As such all health care workers could be
  regarded as providing spiritual care.

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Helping with Love/Positive Regard

• Being genuine
• Respecting the patients individuality
• Deep listening
• Attentive silence,
• To listen with the whole of our being.
• We should avoid giving "answers"
• Expressing empathy, warmth and positive regard.

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Helping with finding Meaning"He who has a why to
live for can bear almost any how" (Nietzsche).

• A useful working framework is The "4 R's",
  described in "A Handbook for Mortals"by Dr Joanne
  Lynn and Dr. Joan Harrold .
• Remembering
• Reassessing
• Reconciling
• Reuniting

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To die healed

• We need to be allowed to express
• I love you
• Forgive me
• I forgive you
• Thank you
• Goodbye

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Overall Summary

• You already use all the skills needed in
  palliative care
• I hope we have refined some of these skills that
  can be particularly helpful in this setting.
• Remember ICEEF, palliative sieve and
  collaborative approach to problem solving with
  the patient.

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GSF-Going for Gold

• 2012 is an important milestone in the UK as we
  become host nation for the next Olympics Games,
  that symbol of life-affirming health. 2012 also
  marks a demographic milestone as the number of
  deaths in the UK is predicted to soar by over 17
  for then next 20 years, until deaths outnumber
  births in about 2032

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1.ACP- why is it important -1?

• Not yet getting it right with care towards the
  end of life.
• Pre-planning of care a means to improve this
• Close relation to implementation of Mental
  Capacity Act
• Research evidence that it is of benefit to
  patients, (with some caveats )

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ACP- Why is it important 2

• Used extensively across the world
• Encourages pre-planning of care
• Enables better provision of service, related to
  pt needs
• Empowers and enables pt and family
• Some find increases realistic hope and
  resilience
• Encourages deeper conversations at an important
  time

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Hope and ACPDavison Simpson BMJ

• ACP can enhance hope not diminish it
• Hope helps determine future goals and provide
  insight
• Information leads to less fear and more control
• Helps maintain relationships, preserve normality,
  reduce feeling of being a burden, encouraging
  sense of being in control,
• Empowering and enabling
• Current practice is ethically and psychologically
  inadequate
• Butbarriers
• Left to HCP to initiate discussion
• Busying over routine clinical issues

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Open questioning

• Could you tell me what the most important things
  are to you at the moment?
• Can you tell me about your current illness and
  how you are feeling?
• Who is the most significant person in your life?
• What fears or worries, if any do you have about
  the future?
• In thinking about the future, have you thought
  about where you would prefer to be cared for as
  your illness gets worse?
• What would give you the most comfort when your
  life draws to a close?
• Horne, G., Seymour J.E. and Shepherd, K. (2006)
  International Journal of Palliative
  Nursing.12(4) 172-178.

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Research evidence 1

• Associated with death in place of choice and with
  use of palliative care1-3
• May increase a sense of control 4
• May increase congruence between preferences and
  treatment 5,6
• Narrow interventions focusing on AD completion
  not as successful as complex, multiple
  interventions.

1.Ratner E, et al J of the American Geriatrics
Society 200149778-78. 2.Degenholtz HB et al
Annals Of Internal Medicine 2004141 113-117.
3. Caplan GA et al. Age and Ageing 2006 35
581-585. 4.Morrison RS et al J of the American
Geriatrics Society 200553(2)290-294. 5. Hammes
B, Rooney B. Archives of Internal Medicine
1998158383-390. 6. Molloy DW et al et al. JAMA
2000 283(102)1437-1444.
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Research evidence 2

• ACP may improve patients quality of life by
  contributing to
• Mutual understanding
• Enhancing openess
• Enabling discussion of concerns
• Enhancing hope
• Relieving fears about the burden of decision
  making
• Strengthening family ties

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ButCultural and Psychological Challenges

• Sensitive to cultural interpretations
• Changing views over time
• Clash of viewpoints
• The impact of a bad news interview
• A desire to live for the moment or take one
  day at a time

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Timing possible trigger points

• life changing event e.g. death of spouse
• following a new diagnosis of life limiting
  condition
• assessment of a persons need
• in conjunction with prognostic indicators
• multiple hospital admissions
• admission to a care home

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3.What is ACP in the UK ?Confusion about
language
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Advance care planning

• ACP is a process of discussion between an
  individual and their care provider, and this may
  or may not also include family and friends.

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Advance Statement

• A requesting statement reflecting an individuals
  preferences and aspirations.
• This can help health professions identify how the
  person would like to be treated
• Not legally binding
• Past and present and future wishes

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Advance Decision

• An advance decision must relate to a specific
  treatment and specific circumstances
• It will only come into effect when the individual
  has lost capacity to give or refuse consent.
• Used to be called Advance Directive/ Living will

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. Difficulties

• Prognostication
• Difficult discussions
• Death Anxiety of staff
• Making time
• Sensitivities and sadness
• May require extra communication skills

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1. ACP is a key part of the solution to improving
   end of life care
2. ACP in is well used and has been found to be of
   value abroad
3. Need to align activities and care with patients
   wishes.
4. ACP is now part of the NHS End of Life Care
   Strategy. Good experience of using it eg GSF,
   PPC. Needs to be offered routinely
5. The process of ACP is important- various tools.
6. Sensitive area- counterintuitive but also
   constructive

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Death teaches us about life Dying teaches about
living