Death, Dying & Bereavement Issues for Practice

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1 Death, Dying & Bereavement Issues for Practice November 2009, King s College, London Dr Jacqueline Watts Senior Lecturer, Faculty of Health & Social Care J.H.Watts@open.ac.uk

2 Social Context of Death and Dying (1) Longevity medical advances have increased human life expectancy to its natural limit of around 85 (Leming and Dickinson, 2007) Medicalisation are clinicians refusing to allow people to die? Is simply being worn out no longer a good enough reason to die? Death as failure

3 Social Context of Death and Dying (2) Professionalisation death now in the hands of experts and no longer a community event with people now de skilled in death matters Death as taboo but is it? 1 st /3 rd person death as dichotomy Hidden away and removed to sanitised space (Aries, 1981)

4 Diversity Matters Secularisation has replaced sacralisation Multiple faith traditions inform death and dying, particularly in some urban communities. Issues of adapting faith practices within mainstream (often clinical) settings Death as transition

5 Quality of dying - the good death (1) Can death ever be good? Good for whom? Contested concept possible attributes: acknowledged and planned for; sudden; pain free; wellmanaged; where biological and social death are co terminus

6 Quality of dying - the good death (2) Appropriate death (Weisman, 1972) offers an alternative framework What might be seen as bad deaths? Is ensuring a good death a clinical (specifically medical) responsibility (Murray and Sheikh, 2008)?

7 Palliative Care What is it? (1) Relatively new health care discipline Care of the whole person holistic care focusing on physical, spiritual, psychological and emotional elements Acknowledgement of total pain Inter professional joined up care

8 Palliative Care What is it? (2) Care of the dying person and their family Affirms life and accepts death as normal process Concerned with quality rather than quantity of life but what is quality of life? Person rather than disease focused

9 How does palliative care work? (1) Specialist care in specialist settings (eg hospice) Specialists supporting generalists (eg district nurses and GPs) in the community Referral system operated through consultants and GPs Multi disciplinary doctors, nurses, social workers, physiotherapists and alternative therapists (massage etc)

10 How does palliative care work? (2) Seamless care Does it work? Are you better off with cancer? Challenges for palliative care

11 Ethics in health and social care practice (1) Beauchamp & Childress, 2001 the 4 principles Beneficence do good to the patient/client Non maleficence do no harm Respect for autonomy respect the wishes, choices and preferences of the patient/client

12 Ethics in health and social care practice (2) Justice treat people fairly which involves ensuring that the costs and benefits of treatment are fairly distributed Sometimes these principles are in conflict examples from your own practice?

13 Ethical health and social care practice Respect for autonomy and dignity has come to be seen as central to patient centredness Includes respecting a person s choice to refuse treatment Use of a Living Will The right to be told the truth but what about the right not to know?

14 Care versus cure Death as failure The drive for clinical intervention Death as stigma In the name of science

15 Understanding loss Loss is any separation from someone or something whose significance is such that it impacts on our physical or emotional wellbeing, role or status (Weinstein, 2008) The impacts of loss will depend on a number of variables something we can explore in workshop groups

16 Understanding death (1) Biological death is when the body expires and there is cessation of all function Psychosocial death is when someone s psychological essence or prior sense of self is perceived to have died (Weinstein, 2008). This could be through drug dependency, joining a cult or through some forms of mental illness

17 Understanding death (2) Social death when someone is in a coma, in a permanent vegetative state or suffering from the advanced stages of dementia. Can also include loss of role (Sandman, 2005). Lawton (2000) argues that this loss of role for those approaching death may be just as significant as the experience of physical deterioration

18 Defining terms Bereavement is the response to loss & has been present in all cultures Grief is the emotional and psychological expression of bereavement often characterised by intense sorrow Mourning is the social expression of grief & is culturally determined

19 Models of grief broadly 2 types Psychological Social

20 Models of grief (1) Psychosocial transitions and assumptive worlds Colin Murray Parkes (1986) The tasks of mourning (4) William Worden (1991) 5 stages of grief: Denial, anger, bargaining, depression, acceptance Elisabeth Kubler Ross (1970)

21 Models of grief (2) Dual process model Margaret Stroebe and Henk Schut (1987) Grief as syndrome with both psychological and physical symptoms Lindemann (1944) Most of the above theories have a temporal dimension and focus on working through emotions

22 Influential social and cultural new models of grief Durable biography Tony Walter (1996) Continuing bonds Dennis Klass (1996) Disenfranchised grief recognising hidden sorrow Kenneth Doka (1989) An underpinning tension of the first two models is the bereaved holding on to dead loved ones or letting the dead go

23 Grief is complex Are models of grief useful in the practice context? Concerns about prescription have been influential Grief is universal but to what extent do you think grief can be generalised or categorised? Is grief essentially a unique individual experience?

24 Supporting bereaved people (1) Counselling, usually adopting Rogerian principles (Rogers, 1951) Mutual help groups with most based on the precept of we are all in the same boat The Compassionate Friends for bereaved parents is one example. Some have political as well as support aims, for example Mothers Against Drunk Driving

25 Supporting bereaved people (2) Cruse Medication/antidepressants raising the question is grief a medical problem? Also what might constitute abnormal grief? How can we measure the effectiveness of the different kinds of support provided to bereaved people? Can and should grief be resolved?

26 The case of children (1) some key aspects to consider are: In the UK 53 children are bereaved of a parent every day Children differ widely in their behaviour and development Age related understandings of death 6 broad categories of needs practical, physical, emotional, intellectual, social, spiritual

27 The case of children (2) some key aspects to consider are: Some dedicated support organisations have been established based on a model of shared experience Winston s Wish is one example Where a sibling has died familyfocused grief therapy may help see Kissane and Bloch (2002)

28 Over to you Opportunity for discussion, group work and case studies