1. Supporting Families Ciara Savage, Palliative Care Social Work Palliative Care Study Day 17 th September 2009

2. Lecture Outline Context Context Practical Focus Practical Focus Challenges – Coping with anger, denial, family dynamics, etc. Challenges – Coping with anger, denial, family dynamics, etc. Solutions – What we can do Solutions – What we can do Questions Questions

3. A FRIENDS STORY, 1990

4. Challenges Family Dynamics Family Dynamics Coping with Anger Coping with Anger Coping with Denial and Collusion Coping with Denial and Collusion Attending to Emotion Attending to Emotion

5. Typical Timeline Breaking Bad News End of Life Care Time of Death Time of Death Immediate Aftermath

6. Coping with Family Dynamics We need to be aware of broader social /cultural issues that have an impact on family systems. We need to be aware of broader social /cultural issues that have an impact on family systems. We need to look at the individual contexts. We need to look at the individual contexts. Be mindful of a family’s journey Be mindful of a family’s journey

7. The whole person exists in context Community/Society Family Networks Environmental Needs - Housing –Money- Facilities-Material Conditions BODY Physical Attributes Medical Conditions MIND Self Esteem Psychology Cognitive Intelligence SPIRIT Meaning Will Power Religion Determination Value Systems Laws Socio-Economic Policies Discrimination Oppression Culture/Ethnicity Resources Family History Relationships Communications Expectations Family Needs Framework for holistic assessment - the whole person exists in a context: From Good Pracices in Palliative Care : A Psycho social Perspective (1998) David Oliviere, Rosalind Hargreaves & Barbara Monroe.

8. Impact of Illness on the Family Altschuler 1997 Socio-Cultural factors are important Socio-Cultural factors are important Life Stage is significant Life Stage is significant Stage of illness significant Stage of illness significant Common dilemmas: Common dilemmas: - living with uncertainty. - maintaining identities. - negotiating changes in roles and expectations. Balancing acceptance with hope as illness progresses. Balancing acceptance with hope as illness progresses.

9. Impact of Illness on the Family Byng-Hall 1997  Families often have a particular ‘way’ or ‘script’ for dealing with illness, and providing care.  Our role in promoting innovative ways to cope with illness.

10. Relationships between Professionals and Families Altschuler 1997 Boundary between the family and outside world, more permeable. Boundary between the family and outside world, more permeable. Shift in definition of roles. Shift in definition of roles. Important to ensure the family-professional system functions effectively. Important to ensure the family-professional system functions effectively. Avoid de-skilling Avoid de-skilling Actively listen to concerns Actively listen to concerns Non-judgemental stance Non-judgemental stance

11. Relationships between Professionals and Families Altschuler 1997 Important to respect limits on what people feel they can share. Important to respect limits on what people feel they can share. Professional role – Provide space for families to consider impact of illness on dignity and quality of their lives. Professional role – Provide space for families to consider impact of illness on dignity and quality of their lives. Allow family members to reach informed decisions they feel comfortable with. Allow family members to reach informed decisions they feel comfortable with.

12. Relationships between Professionals and Families – effective communication Illness Narratives (Altschuler 1997) Illness Narratives (Altschuler 1997) - a way of exploring the patients’ and families experience of illness - Illustrate strategies used to cope and manage illness - Highlight unique gains and losses to individual relationships - Method to explore parts of patients stories which may have been excluded.

13. Purpose of Family Meetings Sharing of Information & Concerns Sharing of Information & Concerns Clarifying goals of care Clarifying goals of care Diagnosis Diagnosis Treatment Plan Treatment Plan Prognosis Prognosis Providing space to attend to challenging issues. Providing space to attend to challenging issues.

14. Coping with Anger Often misdirected at health professionals. Often misdirected at health professionals. Remain calm; acknowledge & legitimise feelings Remain calm; acknowledge & legitimise feelings Establish cause. Establish cause. Is it justified? Is it justified? Who/ where is it focused? Who/ where is it focused? Aim for healthy discharge of feelings. Aim for healthy discharge of feelings. (Faulkner, 1998)

15. Coping with Anger – Altschuler 1997 Aim to direct the energy of ANGER into some ACTION Aim to direct the energy of ANGER into some ACTION Energy to Harness, not to Resist. Energy to Harness, not to Resist.

16. Copyright ©1998 BMJ Publishing Group Ltd. Faulkner, A. BMJ 1998;316:130-132 Methods of dealing with anger

17. Denial A valid coping mechanism for patients and their families. A valid coping mechanism for patients and their families. May be total (rare). May be total (rare). May be ambivalent. May be ambivalent. Level of denial may change over time. Level of denial may change over time. (Faulkner, 1998) Question/ Prompt Question/ Prompt

18. Collusion A situation where a group of people agree to keep information from or to misinform others. A situation where a group of people agree to keep information from or to misinform others. Generally an act of love and a need to protect a loved one from further pain. Generally an act of love and a need to protect a loved one from further pain. Fear that ‘truth’ will take away hope.(Faulkner 1998) Fear that ‘truth’ will take away hope.(Faulkner 1998) A way to cope with denial. A way to cope with denial. Patients commonly aware and also colluding. Patients commonly aware and also colluding.

19. Collusion: How to diffuse it sensitively Modelling open communication at a team level. Modelling open communication at a team level. Explore the cost of collusion to the family. Explore the cost of collusion to the family. Explore fears. Explore fears. Promise not to give unwanted information. Promise not to give unwanted information. Never agree to withhold information. Never agree to withhold information.

20. Necessary Collusion? Referred to by Helft, 2005. Referred to by Helft, 2005. Believes that, “.. Except in instances where stark frankness is openly requested, a style of communication that allows patients to dictate most of the flow of prognostic information, or to avoid it, is an ethical strategy of prognostic communication.” Believes that, “.. Except in instances where stark frankness is openly requested, a style of communication that allows patients to dictate most of the flow of prognostic information, or to avoid it, is an ethical strategy of prognostic communication.”

21. Copyright ©1998 BMJ Publishing Group Ltd. Faulkner, A. BMJ 1998;316:130-132 Recommended manner of breaking bad news

22. Breaking Bad News Its an UNCOMFORTABLE experience Its an UNCOMFORTABLE experience Goal – EMPATHY Goal – EMPATHY Diificult to do – be aware of how we screen our own pain Diificult to do – be aware of how we screen our own pain Eg. Avoiding eye contact, rushing, turning away, inappropriate settings. Eg. Avoiding eye contact, rushing, turning away, inappropriate settings.

23. Communication Studies have shown a correlation of perceived poor team communication styles with increased levels of family distress. (Morita et al, 2004) Studies have shown a correlation of perceived poor team communication styles with increased levels of family distress. (Morita et al, 2004) Revealed a strong need for emotional support for families. Lower levels of distress correlated with physicians willing to explore families’ feelings. Revealed a strong need for emotional support for families. Lower levels of distress correlated with physicians willing to explore families’ feelings.

24. Effective Communication Depends on all stakeholders. Depends on all stakeholders. Avoid ambivalent language, can lead to misunderstandings. Avoid ambivalent language, can lead to misunderstandings. Needs of patients and carers do not always match. Needs of patients and carers do not always match. Demanding on professionals: ‘pig in the middle’ syndrome. (Faulkner, 1998) Demanding on professionals: ‘pig in the middle’ syndrome. (Faulkner, 1998)

25. Providing space Re-tell story - Helping families hear bad news, come to terms with situation. Re-tell story - Helping families hear bad news, come to terms with situation. Making sense of the ‘new reality’ Making sense of the ‘new reality’ Meaning Making Meaning Making Attending to emotion – however it presents itself. Attending to emotion – however it presents itself. Aim to ensure families feel we have understood their fears/dilemmas. Aim to ensure families feel we have understood their fears/dilemmas.

26. “Despite the urgency to get things right, there is no one best way of saying goodbye,and what is often most important is accepting differences in what each person can tolerate.” Altschuler, 1997 Hug, 1990