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

GP Refresher Course Page 1 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

GP Refresher Course Page 2 Spring 2010 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

GP Refresher Course Page 3 Spring 2010 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 ?

GP Refresher Course Page 4 Spring 2010 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?

GP Refresher Course Page 5 Spring 2010 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

GP Refresher Course Page 6 Spring 2010 Patient Pathway supportive and palliative care deteriorationdeath/bereavement Assess need Identify needs Plan Implement Review PPC GSF LCP Preferred Priorities for Care (PPC) Gold Standards Framework (GSF) Liverpool Care Pathway (LCP)

GP Refresher Course Page 7 Spring 2010 “Cancer” Trajectory, Diagnosis to Death Time Onset of incurable cancer -- Often a few years, but decline usually < 2 months Function Death High Low Cancer Possible referral to SPCS

GP Refresher Course Page 8 Spring 2010 Organ System Failure” Trajectory Function 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

GP Refresher Course Page 9 Spring 2010 “ Dementia/Frailty” Trajectory Time Quite variable - up to 6-8 years Death High Low Onset could be deficits in ADL, speech, ambulation Function

GP Refresher Course Page 10 Spring 2010 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

GP Refresher Course Page 11 Spring 2010

GP Refresher Course Page 12 Spring 2010 Barriers to effective communication  Fears  Beliefs/attitudes  Skills  Working environment Consider HCPs and patients

GP Refresher Course Page 13 Spring 2010 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

GP Refresher Course Page 14 Spring 2010 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

GP Refresher Course Page 15 Spring 2010 Blocking Behaviours  Physical questions  Inappropriate information  Closed questions  Multiple questions  Leading questions  Passing the buck  Defending  Jollying along  Chit chat

GP Refresher Course Page 16 Spring 2010 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

GP Refresher Course Page 17 Spring 2010 Immediate consequences of avoidance  Patient becomes preoccupied with undisclosed concerns  Failure to take in information  Selectively recalling negative phrases  Remains distressed

GP Refresher Course Page 18 Spring 2010 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

GP Refresher Course Page 19 Spring 2010 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

GP Refresher Course Page 20 Spring 2010 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

GP Refresher Course Page 21 Spring 2010 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 % Koopermeiners et al(1997)

GP Refresher Course Page 22 Spring 2010 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

GP Refresher Course Page 23 Spring 2010 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

GP Refresher Course Page 24 Spring 2010 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

GP Refresher Course Page 25 Spring 2010 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 have with patients or family members are difficult and require skill, warmth and sensitivity in equal measure  Maintaining hope in a realistic way

GP Refresher Course Page 26 Spring 2010 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