Palliative careGrief and Self Care

Catherine Hughes & Paul Ashley

Normal Grief

Grief is defined as a normal, internalised reaction to the loss of a person, thing or idea. It is our emotional response to loss.

Grief is a normal affective response to the loss of a loved person

The pain of another touches upon the pool of our own repressed tears and anquish Kubler-Ross, (1982, p.44)

Exercise

•Think of your very first experience of loss and grief.•Talk briefly to the person you feel most comfortable with about this loss. •Would you say that this grief is resolved?•What strategies do you have that help you manage your feelings?

Processing GriefThe four psychological tasks of grief are:

UnderstandingGrievingCommemoratingGoing on

Worden (1991). Grief Counselling and Grief Therapy

The four tasks of mourning.

To accept the reality of the loss. To Work Through To 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.

Why people struggle to grieve

ambivalent and hostile relationships excessive amounts of guilt and anger narcissistic

Relational factors previous death, abuse or trauma highly dependent

Why people struggleto grieve Circumstantial Factors

loss is uncertain inconclusive grief multiple losses anxiety or panic disorder

Historical factors past complicated grief history of depression

Why people fail to grieve

Social Factors The Loss is socially unspeakable – suicide,

AIDS, murder, disease, etc. The loss is socially negated – abortion, still-

birth (and I would suggest loss in unrecognised relationships, work related, gay and lesbian, older people who marry).

The absence of a support network – people who knew the deceased and can talk about them.

Loss and Grief in a cross cultural context

What we understand about death is filtered through our own cultural understandings

Oppenheim (1973) “Maori Death Customs” argues that to think about death is to think about our own death, and to think about our own death is to think about ones own culture. For how we imagine our own death will be embedded in our own cultural context.

Theories&

Models

About the use of Theories

A theory of grief intends allow us to understand symptoms explain why the death of a loved one results in

enduring physical and mental impairment for some people, while others seem able to cope without any functional deterioration

allow us to develop strategies of intervention or therapy to ameliorate or prevent pathological grief reactions.

Allow us to understand individual processes

Theories of Loss and Grief Bowlby (1958, 1960)

Attachment and seeking of reunion Parkes (1972)

Varies according to strength of relationship Ainsworth (1967)

an “inner something” including memories, feelings, wishes, expectancies and intentions – adds complexity

Kubler Ross (1960s) Denial and isolation, Anger, Bargaining, Depression, Acceptance

O’Connor (1984) “Circle of Loss” Loss relates to strength of the lost relationship

Stroebe and Stroebe Numbness, Yearning and Protest, Despair, Recovery and

Restitution Arthur Franks

Writes about Illness as a call for stories The restitution narrative, The chaos narrative, The quest

narrative Michael White

Saying Hullo Again Lorraine Hedkte

Rememberingpractices.com

Loss of desired opportunities, lost objects, changes in social networks.

Losses that require adjustment to our way of living (retirement, special acquaintances, city, job changes).

Losses associated with the separation from significant others (abandonment, death separation, divorce).

Losses associated with own physical status (health)

Some Theories or Models about Loss and Grief

O’Connor (1984) “Circle of Loss”

Kubler-Ross’s Stages of dying

Denial and isolation

Anger

Bargaining

Depression

Acceptance

Facilitating Grief Requires

Active involvement Non-judgemental listening Genuine concern Acknowledging the loss Not minimizing Empathy Unique perspective of loss Use self-disclosure wisely Respect the mourner Provide peace and inner comfort.

Complicated Grief

Contributing Factors in Complicated grief

Sudden or Traumatic DeathSocial Stigma of Death Multiple Losses Past relationship to the Deceased.Grief Process of the Surviving Parent or

Caretaker

Disenfranchised Grief Definition “Disenfranchised grief can be

defined as the grief that the persons experience when they incur a loss that is not or cannot be openly acknowledged, publicly mourned, or socially supported.

Why do we need to know about disenfranchised grief?

Disenfranchised grief occurs for three reasons

The loss is not recognised.

The griever is not recognised

The relationship is not recognised.

Scenarios where disenfranchised grief occurs Work relationships, business associates,

and friends. Prenatal death, abortion, Alzheimer’s

disease Client death/suicide No ‘socially recognised right’ or

‘sanctioned role’ or capacity to grieve Young couple secretly in love, de-facto

relationships, extra-marital relationships, and homosexual relationships

Pet death.

Facilitating Grief: A practice exercise

In discussion with the person next to you come up with a situation where you may have experienced disenfranchised grief.

Palliative CareField of Practice

Palliative Care professionals Stressors Uncertainty Distress of others Lack of resources Not having all the answers Lack of clarification of role or boundaries Not being able to change things; pain,

discomfort, families distress, illness, family function, death

Strategies

Supervision Debriefing and reflection Take breaks Cup of tea or coffee or water Leave work on time Spirituality Be realistic we don’t have all the answers

Strategies

Black Humor Deflection – diverting discussions away

from endings or death Referring on Blaming - justifying lack of service Minimizing, or criticising Doing rather than being Stereotyping Therapeutic narratives Offering hope Locus of control

Questions

What do these strategies stand in the way of?

What could we do differently? How is our grief disenfranchised? How do we disenfranchise others

in our work?

Case Study

You are meeting with a family today to do an initial assessment for admission to your service. The woman you are meeting has just been told that she has lung cancer with extensive metastatic disease. This is the first time she has ever been sick. Mary and the family are all in shock about the diagnosis as they had no idea that Mary had cancer.

Engage in a mock assessment

Healthy Strategies Up-skill ourselves so that we can have

the difficult conversations Gain insight into the coping strategies

that we use personally Gain information on difference and

diversity, class, culture, religion, sex, etc

Engaging in reflective practice Ethical and moral awareness Role Clarity, organizational clarity,

boundaries, limits of service Identifying supports before they are

needed.