Dying to Talk GP Refresher Course Stephanie Barker Spring 2010 Consultant Nurse.

Dying to Talk

GP Refresher Course Stephanie Barker

Spring 2010 Consultant Nurse

GP Refresher Course Spring 2010

Factors considered important at end of life by patients, families and care providers

Consistently rated as important:

Pain and symptom management.

Preparation for death

Achieving a sense of completion

Decisions about treatment preferences

Being treated as a “whole” person

Steinhauser et al JAMA 2000


Talking to families about difficult subjects

Some individuals/families do not want to talk

Respecting difference and not forcing the issue

Creating opportunities for conversation

Responding to the cues patients and families give us – they are not always direct


What do patient/family members want/need to talk to us about?

Information context:

Course of the illness?

Treatment options?

Outcome?

Practicalities e.g. finance, grants, etc ?


What do patient/family members want/need to talk to us about?

Emotional context:

Fears?

Uncertainty?

Changes in relationships?

Adapting to new roles and responsibilities?

Talking with other people – especially children?

Being normal?


Challenging conversations

Some examples:

Discontinuing disease specific treatments. Dealing with conflict eg differing family opinion Introducing Specialist Palliative Care Services Discussing life expectancy or prognosis Discussing future symptom management Advance care planning. Discussions about CPR Discussions about the process of death and

dying


Patient Pathway

supportive andpalliative care

deterioration death/bereavement

Assess need

Identify needs

Plan

Implement

Review

PPC GSF LCP

Preferred Priorities for Care (PPC)Gold Standards Framework (GSF)Liverpool Care Pathway (LCP)


“Cancer” Trajectory, Diagnosis to Death

TimeOnset of incurable cancer-- Often a few years, but decline usually < 2 months

Fun

ctio

n

Death

High

Low

Cancer

Possible referral to

SPCS


Organ System Failure” TrajectoryF

unct

ion

Death

High

Low

(mostly heart and lung failure)

Begin to use hospital often, self-care becomes difficult

~ 2-5 years, but death usually seems “sudden”

Time


“Dementia/Frailty” Trajectory

Time Quite variable -up to 6-8 years

Death

High

Low

Onset could be deficits in ADL, speech, ambulation

Function


Consequences of poor communication

Psychological distress and morbidity

Poor adherence to treatment

Reduced quality of life

Dissatisfaction with care

Complaints and litigation

Potential burnout in healthcare professionals


Barriers to effective communication

Fears

Beliefs/attitudes

Skills

Working environment

Consider HCPs and patients


Barriers (1)

Fears

Unleashing strong emotions

Upsetting patients/relatives

Patient refusing treatment

Difficult questions

Damaging the patient

Beliefs

Emotional problems are inevitable

Not my role

Talking raises expectations

Patient will fall apart

Will take too long


Barriers (2)

Lack of skills

Assessing knowledge and perceptions

Integrating medical and psychosocial modes of enquiry

Handling difficult reactions

Working environment

No support or supervision

No referral pathway

Staff conflict

Lack of time


Blocking Behaviours

Physical questions

Inappropriate information

Closed questions

Multiple questions

Leading questions

Passing the buck

Defending

Jollying along

Chit chat


Challenging conversations

Some examples:

Discontinuing disease specific treatments. Dealing with conflict eg differing family opinion Introducing Specialist Palliative Care Services Discussing life expectancy or prognosis Discussing future symptom management Advance care planning. Discussions about CPR Discussions about the process of death and

dying


Immediate consequences of avoidance

Patient becomes preoccupied with undisclosed concerns

Failure to take in information

Selectively recalling negative phrases

Remains distressed


In Practice

It can be difficult to talk about loss, transition and death because:

The practitioner may not create an opportunity to have such a conversation or may close it down if it arises

It is hard to put thoughts that have a high emotional context into words

The stark language of illness and dying


Some general principles for managing challenging conversations

Use of generic communication skills using an empathic, warm, patient centred style (builds trust).

Explore patient understanding

Explore ICE

Use of open questions with an emotional content

Clarifying patient or carer concerns

Allow enough time

Maintain hope


What is Hope?

Stanley (1978)

• A belief that a personal tomorrow exists

Fitzgerald (1971)

• A positive expectation that goes beyond visible facts

Owen (1989)

• A motivating force, an inner readiness to reach goals


Health professionals’ positive influences on hope

Response

Taking time to talk

Giving information

Being friendly, polite

Caring behaviours

Being helpful

Just ‘being there’

Being respectful

Being honest

%

46

41

38

34

34

25

22

19

Koopermeiners et al(1997)


Health professionals’ negative influences on hope

Doctors

Gave discouraging medical facts

Disrespectful presentation of information

Cold

Felt sorry for the patient

Conflicting information between Doctors

Trivialised the situation

Candid (without being positive)

Poor communication

Nurses

Mean

Disrespectful


False Hope

We are sometimes tempted to “inject hope”, often with the encouragement of the

patient, because their pain makes us so uncomfortable. What we need to realise is that false hope only relieves the patients pain for a moment and will create worse

pain later on when the hopes are not fulfilled.

Buckman


Hope enhancing strategies

Reassure the patient that a support system or team will be there for them throughout their illness. Emphasise what can be done Reassure the patient that there are treatments available for controlling symptoms Don’t make unrealistic promises eg that a patient will be totally pain free Identify where patient has control eg ACP Respect the patient’s coping strategies eg denial. Recognise the spectrum of hope that may be being simultaneously expressed. Respect the patient’s wishes to explore alternative or experimental treatment provided they have adequate information to make an informed choice


Key points

Patients don’t always raise difficult topics spontaneously and this means the HCP needs to be proactive

What does the patient understand?

What does the patient want/expect?

Many of the end of life conversations that HCP’s havewith patients or family members are difficult and require skill, warmth and sensitivity in equal

measure

Maintaining hope in a realistic way


Further reading

Handbook of Communication in Oncology and Palliative Care (2010) Ed. David Kissane, Barry Bultz, Phyllis Butow & Ilora Finlay. Oxford University Press

Clinical practice guidelines for communicating prognosis and end of life issues with adults in the advanced stage of life-limiting illness and their caregivers.(2007) Josephine Clayton, Karen Hancock, Phyllis Butow, Martin Tattersall &David Currow

www.mja.cm.au/public/issues/186_12__180607/cla11246_fm.html

http://www.mja.cm.au/public/issues/186_12__180607/cla11246_fm.html

Dying to Talk GP Refresher Course Stephanie Barker Spring 2010 Consultant Nurse.

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