Consultation Issues In Consultation Issues In Palliative care and Advanced Palliative care and Advanced

Care PlanningCare PlanningPete NightingalePete Nightingale

Macmillan GPMacmillan GP

Why Bother?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

The Disease - Illness Model The Disease - Illness Model (1984)(1984)

Patient Presents Problem

Gathering Information

Parallel search of two frameworks

Illness framework Disease framework

Understanding patients experiences

Differential Diagnosis

Integration

Explanation & Planning

The Calgary -Cambridge The Calgary -Cambridge Approach to Communication Approach to Communication

Skills Teaching (1996)Skills Teaching (1996)

• Initiating the Session

• Gathering Information

• Building the Relationship

• Explanation and Planning

• Closing the Session

Gathering InformationGathering 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 patient’s agenda first

Understanding The Patients Understanding The Patients PerspectivePerspective

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))

Two ways to discover Patients Two ways to discover Patients perspectiveperspective

1. Picking up verbal and non verbal cues

2. Asking about:-

• Ideas

• Concerns

• Expectations

• Effects

• Feelings

Ways to pick up verbal and non-Ways to pick up verbal and non-verbal cuesverbal 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?’

IDEAS

‘ what you think may have started this pain?’

‘is there anything you think that may have made this problem worse?

ConcernsConcerns

• 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?

ExpectationsExpectations

You’ve 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?’

EffectsEffects

‘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?’

FeelingsFeelings

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?’

How to stop a downward spiralHow to stop a downward spiral

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

Disease Agenda:- 4 main symptom Disease Agenda:- 4 main symptom areas to rememberareas to remember

1. Pain

2. Nausea/vomiting

3. Breathing

4. Agitation/Confusion

But please don’t forget other areas for people not in the dying phase of their illness

Disease AgendaDisease Agenda

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

Use of a SummaryUse 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

Gathering InformationGathering InformationSummarySummary

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

Building The RelationshipBuilding The Relationshipwith palliative care patientswith palliative care patients

Developing RapportDeveloping Rapport

• Again only 3 main skills to consider

• ACCEPTANCE

• EMPATHY

• SUPPORT

Developing Rapport 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

EMPATHYEMPATHY

• 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’

Sympathy and EmpathySympathy and Empathy

• Empathy is seeing the problem from the patient’s position

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

Supportive approachesSupportive approaches

• Concern

• Understanding

• Willingness to help

• Partnership

• Acknowledge coping efforts and self care

• Sensitivity

Summary-Building the Summary-Building the relationshiprelationship

• 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

Breaking Bad NewsBreaking Bad News

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

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

1. Preparation

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

2. 2. WhatWhat doesdoes thethe patientpatient knowknow??

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?’)

3. 3. IsIs moremore informationinformation wantedwanted??

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?')

4. 4. GiveGive aa warningwarning shotshot

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

5. 5. AllowAllow denialdenial

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

6. 6. ExplainExplain (if(if requestedrequested) )

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

7. 7. Listen to concernsListen to concerns

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

8. 8. Encourage ventilation of feelingsEncourage 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.

9. 9. Summarise and planSummarise and plan

Summarise concerns, plan treatment together, foster hope.

10. 10. Offer availabilityOffer availability

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

Are we in effect delivering Spiritual Are we in effect delivering Spiritual Care?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.

Helping with Love/Positive Helping with Love/Positive RegardRegard

1. Being genuine 2. Respecting the patients individuality 3. Deep listening • Attentive silence, • To listen with the whole of our being. • We should avoid giving "answers" • Expressing empathy, warmth and

positive regard.

Helping with finding MeaningHelping with finding Meaning"He who has a why to live for can bear almost any "He who has a why to live for can bear almost any

how" (Nietzsche).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 .

1. Remembering

2. Reassessing

3. Reconciling

4. Reuniting

To die healedTo die healed

We need to be allowed to express

• I love you

• Forgive me

• I forgive you

• Thank you

• Goodbye

Overall SummaryOverall 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.

GSF-Going for GoldGSF-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

1.ACP- why is it important -1?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 )

ACP- Why is it important 2ACP- 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

Hope and ACPHope and ACPDavison Simpson BMJDavison 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

But…barriers • Left to HCP to initiate discussion• Busying over routine clinical issues

Open questioning 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.

Research evidence 1Research 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 2001;49:778-78. 2.Degenholtz HB et al Annals Of Internal Medicine 2004;141: 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 2005;53(2):290-294. 5. Hammes B, Rooney B. Archives of Internal Medicine 1998;158:383-390.6. Molloy DW et al et al. JAMA 2000; 283(102):1437-1444.

Research evidence 2Research 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

But…Cultural and Psychological But…Cultural and Psychological Challenges 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’

Timing: possible trigger pointsTiming: possible trigger points

• life changing event e.g. death of spouse • following a new diagnosis of life limiting

condition • assessment of a person’s need• in conjunction with prognostic indicators • multiple hospital admissions• admission to a care home

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

Advance care planning 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.

Advance Statement Advance Statement

• A requesting statement reflecting an individual’s 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

Advance DecisionAdvance 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

. Difficulties. Difficulties

• Prognostication

• Difficult discussions

• ‘Death Anxiety’ of staff

• Making time

• Sensitivities and sadness

• May require extra communication skills

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

Death teaches us about lifeDeath teaches us about life Dying teaches about living Dying teaches about living