Spirituality and Palliative Care

1. Spirituality and Palliative Care

2. Describe the elements of a good death from the perspectives of patients, loved ones, and health care clinicians Give examples of how carers can help to facilitate a good death for patients Share briefly with each other examples of both good and not-so-good deaths that you have witnessed. A good death? Slide Note Today, we are going to focus on the end of the palliative care spectrum�life closure and the last days of life. This is an area where health care clinicians are often the least comfortable because they feel they have so little to offer. In fact, we have a lot to offer patients at this time in their lives. This is also a time where BEING is just as important as doing. We will be discussing what we can offer to patients when treatment options have failed and how we can help them to have a good death. We will be looking at several elements of a good death that we can use as a framework for helping patients to sort out their goals for care at end of life. We will be looking at our own roles in helping patients to have a good death, and we will also be looking at how cultural beliefs, values and perspectives can impact a patient�s perception of what is a good death. Slide Note Today, we are going to focus on the end of the palliative care spectrum�life closure and the last days of life. This is an area where health care clinicians are often the least comfortable because they feel they have so little to offer. In fact, we have a lot to offer patients at this time in their lives. This is also a time where BEING is just as important as doing. We will be discussing what we can offer to patients when treatment options have failed and how we can help them to have a good death. We will be looking at several elements of a good death that we can use as a framework for helping patients to sort out their goals for care at end of life. We will be looking at our own roles in helping patients to have a good death, and we will also be looking at how cultural beliefs, values and perspectives can impact a patient�s perception of what is a good death.

3. How do we define quality when someone is dying?How do we define quality when someone is dying?

4. Theories of bereavement and grief

5. Theories of Bereavement & Grief Parkes (1998) identified related stages in the grieving process Shock or numbness Yearning and pining (anger & guilt) Disorganisation Beginning to pull life back together Shock and numbness that occurs close to the time of loss, involving a feeling of disbelief and an urge to deny the truth of the news. Yearning and pining that includes pangs of grief and anxiety, interspersed with feelings of anger, which may be accompanied by bitterness, irritability and self-reproach (blame). Disorganisation and despair characterised by feelings of depression and a tendency to withdraw socially. Recognised behaviour and signs of beginning to pull life back together. Searching: closely related to �pangs� of grief which may be experienced spontaneosuly in the immediate post-bereavement stage but later in response to reminders. The bereaved may have a sense of the bereaved being with them or may �see� them. Shock and numbness that occurs close to the time of loss, involving a feeling of disbelief and an urge to deny the truth of the news. Yearning and pining that includes pangs of grief and anxiety, interspersed with feelings of anger, which may be accompanied by bitterness, irritability and self-reproach (blame). Disorganisation and despair characterised by feelings of depression and a tendency to withdraw socially. Recognised behaviour and signs of beginning to pull life back together. Searching: closely related to �pangs� of grief which may be experienced spontaneosuly in the immediate post-bereavement stage but later in response to reminders. The bereaved may have a sense of the bereaved being with them or may �see� them.

6. Theories of Bereavement & Grief Kubler Ross (1970) described stages in the process of accepting the diagnosis of terminal illness. Denial and isolation Anger Bargaining Depression Acceptance Hope KB identified a series of stages through which the person confronted with their own death may pass, rarely sequentially, often randomly and occasionally simultaneously; Denial and isolation � a necessary thhough usualy temporary stage. Denial acts as a form of protection against overwhelming feelings of powerlessness and loss. Ocassionally it may continue until death. Anger: �Why me?� Bargaining � often desribed as �an attempt to postpone�. It may be an attempt ot bargain with a higher being or with staff that are treating them. Depression � a sense of loss and sadness but perhaps also guilt and hopelessness. Acceptance � a stage �almost devoid of feelings� but perhaps charactersied by peace and acceptance. Hope � a complex state that can encompass hope of cure, a miracle, or hope foe a pain free death or hopefulness gained through some sense of acceptance of death. These theories are being challenged. There is an increased acceptance that the bereaved may not �get over it� or �move on� but instead reach a sense of �accomodation�. Accomodation is a continual activity, related both to others and to shifting self-perceptions as the physical and social environment changes and as individual, family and community developmental processes unfold. KB identified a series of stages through which the person confronted with their own death may pass, rarely sequentially, often randomly and occasionally simultaneously; Denial and isolation � a necessary thhough usualy temporary stage. Denial acts as a form of protection against overwhelming feelings of powerlessness and loss. Ocassionally it may continue until death. Anger: �Why me?� Bargaining � often desribed as �an attempt to postpone�. It may be an attempt ot bargain with a higher being or with staff that are treating them. Depression � a sense of loss and sadness but perhaps also guilt and hopelessness. Acceptance � a stage �almost devoid of feelings� but perhaps charactersied by peace and acceptance. Hope � a complex state that can encompass hope of cure, a miracle, or hope foe a pain free death or hopefulness gained through some sense of acceptance of death. These theories are being challenged. There is an increased acceptance that the bereaved may not �get over it� or �move on� but instead reach a sense of �accomodation�. Accomodation is a continual activity, related both to others and to shifting self-perceptions as the physical and social environment changes and as individual, family and community developmental processes unfold.

7. Theories of Bereavement & Grief Worden (2005) concentrates on tasks of grieving that have to be worked through (�grief work�) if resolution of grief is to take place: To accept the reality of the loss To experience the pain of grief To adjust to an environment in which the deceased is missing To emotionally relocate the deceased and move on with life Accepting the reality of the loss is a cognitive acceptance that the loss has occurred. Wrking through the pain of grief involves a willingness to experience the pain of grief and the additional pain that will emerge during the tasks of grief. Adjusting to an environment in which the deceased is missing is an enveloping and continuous aspect of grief work. And finally finding a place for the deceased that that will enable the person to be connected with the deceased but in a way that enables him/her to get on with their life. Accepting the reality of the loss is a cognitive acceptance that the loss has occurred. Wrking through the pain of grief involves a willingness to experience the pain of grief and the additional pain that will emerge during the tasks of grief. Adjusting to an environment in which the deceased is missing is an enveloping and continuous aspect of grief work. And finally finding a place for the deceased that that will enable the person to be connected with the deceased but in a way that enables him/her to get on with their life.

8. Theories of Bereavement & Grief Walters (1996) describes a shift from a modernist era, in which counselors expertly manage a predictable grief process, to a more postmodern individualizing of loss and grief and a rejection of grand theory �Research increasingly indicates that a person's path through grief owes more to personality and habitual strategies for coping with stress than with any universal "grief process.�

9. There is a close connection between a person's outlook and personality and the way that the person expresses grief. For some people, the proper or appropriate expression of their grief is expressing endless grief. For others, repression of feelings is what feels most appropriate. The important message here is that each person's way of expressing grief is possibly the best way for that person to express his or her grief.

10. no one fundamental theory pertains to the experience of all bereaved persons. Rather, it is a question of drawing out different grief patterns.

11. Bereavement as narrative negotiation �bereavement is a part of a never-ending and reflexive conversation with self and others through which the � person makes sense of their existence. In other words, bereavement is part of the process of (auto) biography. The biographical imperative � the need to make sense of self and others in a continuing narrative � is the motor that drives bereavement behaviour.� The language of spirituality and of existential aspects of palliative care is very much based on narratives, on metaphors and stories

12. Remembering the dead

15. Moving from the outward to the inward Grief counselling is both narrative re-creation and renegotiation Grief work is autobiographical in nature A focus on the spiritual provides an internal and an external anchor that can enable the reconstruction of fresh narratives and new biographies.

16. What is Palliative Care?

17. Palliative care The relief of suffering and the improvement of quality of life for patients and families who are living with life-threatening illness.

18. Palliative care seeks to Relieve suffering Improve quality of life Enable individuals and families to experience a good death

19. Palliative Medicine: Three Goals All diagnostic or therapeutic plans be made in terms of the sick person, not the disease. To maximize the patient�s function, not necessarily the length of life. To minimize the suffering of the patient and family. -- Eric Cassell M.D. The Nature of Suffering Movement away from the medical model Redressing of the balance of power between patient and clinician From monologue to dialogueMovement away from the medical model Redressing of the balance of power between patient and clinician From monologue to dialogue

20. Spirituality and Palliative Care

21. Terminal illness involves

23. What is hope? Hope and the family � life has not been wasted � spiritual intervention � reflection on life history.Hope and the family � life has not been wasted � spiritual intervention � reflection on life history.

24. Hope Hope is a construct reflecting a sense of goal-directed determination and ability to generate plans to achieve goals. Individuals who are high in hope are able to conceptualize their goals clearly, generate multiple pathways towards goal pursuit, and have high motivation to pursue goals. Coping with illness experiences by turning to spiritual beliefs is more effective for less hopeful women than for those with high levels of hope Spirituality (understood as the self-defined core beliefs that women use to make sense of their illness experiences) plays a role in increasing a sense of control, comfort, ability to find meaning and intimacy and belonging. Stanton AL, Danoff-Burg S, Huggins ME. Psycho-oncology. 2002 Mar-Apr;11(2):93-102. �The first year after breast cancer diagnosis: hope and coping strategies as predictors of adjustment.�

26. William Breitbart and Meaning centred psychotherapy intervention Meaning Centered Psychotherapy is based on the concepts of meaning as derived from the work of Viktor Frankl, M.D. and adapted for use in cancer populations by William Breitbart at Memorial Sloan-Kettering Cancer Center, New York. Breitbart noted that people asking for assisted suicide had common experiences: hopelessness, meaningless, feelings of being a burden and so forth. Meaning centred psychotherapy is specifically designed to enable people to overcome their sense of meaningless and hopelessness and thus the desire to take their own lives. Two forms of Meaning Centered Psychotherapy have been developed: Meaning Centered Group Psychotherapy (8 weekly 1 � hour sessions) ; Individual Meaning Centered Psychotherapy (7 weekly 1 hour sessions). Breitbart W. Spirituality and meaning in supportive care: Spirituality- and meaning-centered group psychotherapy interventions in advanced cancer Supportive Care in Cancer. 2002;10(4):272-280.

27. Participants become familiar with the concept of spirituality as a construct composed of faith and/or meaning. Participants are helped to understand the importance of meaning, as a component of spiritual well-being, and its relationship to depression, hopelessness and desire for death. Participants engage in a structured, didactic and experiential 8 session intervention for advanced cancer patients aimed at sustaining or enhancing a sense of meaning in the face of terminal illness.

28. Relationships with God and with others

29. Prayer, Coping and Belief in God

30. Anna�s Story