1. Palliative care and terminal illness: Grief, loss and communication
Linda Hadeed, PhD
Palliative Care Conference
October 2012

2. PALLIATIVE CARE
Specialized medical care for people with serious illnesses
Focus – to provide patients relief from pain, and stress of a serious illness
Goal - to improve quality of life for both the patient and the family
Team of doctors, nurses, and other specialists work together with patient's other doctors to provide an extra layer of support

3. PALLIATIVE CARE Appropriate at any age or stage in a serious illness
Sometimes provided along with curative treatment
Time for close communication
Help navigate the healthcare system
Guide with difficult and complex treatment choices

4. PALLIATIVE CARE
Emotional and spiritual support for patient and family – care for mind, body and spirit
Generally the team works closely together to provide what is needed
Different from care to cure illness (curative treatment)

5. PALLIATIVE CARE
Serious illness makes patients and families feel lonely, angry, scared, or sad
May feel that care [treatment] doing more harm than good
Palliative care providers generally interested in what is bothering the patient, what is important to the patient and family and work to help them cope

6. Palliative Care vs.Hospice Care
Hospice care provides:-
medical services
emotional support
spiritual resources for people who are in the late stages of an incurable illness
Helps family members manage the practical details and emotional challenges of caring for a dying loved one

7. Hospice Care
Hospice services provided by team of caregivers that may include health professionals, volunteers, and spiritual advisors
Services generally include:-
Basic medical care focuses on pain and symptom control
Medical supplies and equipment, as needed.

8. Hospice Care Counseling and social support
Services are available, as needed, for both the person in hospice care and for anyone in his or her family.
Guidance with the difficult, but normal, issues of life completion and closure

9. Hospice Care
A break (respite care) for caregivers, family, and others who regularly care for the person
Volunteer support, such as meal preparation or errand running
Generally, hospice care is free of charge
Primary aim is to enhance the quality of life and dignify the terminal stages through special care

10. Terminal Illness & Trauma
Trauma is no longer defined as experience outside the norm of human experiences
More recently, trauma is as anything that traumatizes the individual (defined by the individual)
Can be physical, emotional or psychological

11. Terminal Illness & Trauma
Emotional and psychological trauma shatters the person’s sense of safety and security
Results in person feeling helpless and vulnerable in a dangerous world.

12. Causes of emotional or psychological trauma
It happened unexpectedly
You were unprepared for it
You felt powerless to prevent it
It happened repeatedly
Someone was intentionally cruel
It happened in childhood
SERIOUS ILLNESS CAN BE TRAUMATIC

13. Emotional and psychological symptoms of trauma
Shock, denial, or disbelief
Anger, irritability, mood swings
Guilt, shame, self-blame
Feeling sad or hopeless
Confusion, difficulty concentrating
Anxiety and fear
Withdrawing from others
Feeling disconnected or numb

14. Physical symptoms of trauma
Insomnia or nightmares Being startled easily Racing heartbeat Aches and pains Fatigue Difficulty concentrating Edginess and agitation Muscle tension

15. Grief and loss
Length and intensity of grief determined by:- severity of the traumatic event
Earlier traumas
Coping skills of the individual(s)
Social support (availability, accessibility, actual use and satisfaction of the support)
GRIEF & LOSS & TERMINAL ILLNESS

16. Grief and loss For professionals:
their own earlier traumas, especially around issues of terminal illness
Whether this was processed or not, etc., will determine how they cope and the quality of service they can provide to the patient and family

17. Stages of grief and loss (Elizabeth Kubler-Ross, 1969)
The Five Stages of Grief and Loss (not just for death and dying)
-Denial
-Anger
-Bargaining
-Sadness/Depression
-Acceptance/Resolution

18. Communication in Palliative Care (Robert Buckman)
Three areas of communication:-
(1) Basic listening skills
(2) The specific communication tasks
- breaking bad news & therapeutic dialogue
(3) Communicating with the family and with other professionals

19. Communication in Palliative Care (Robert Buckman)
Sources of difficulty in communicating with the dying patient
(1) those related to society
(2) those related to the patient
(3) those related to the health care professional
(medical school training)

20. Communication in Palliative Care (Robert Buckman)
The social denial of death (tabboo topic)
“No you aren’t,” …“Don’t talk that way” (Christine Middlebrook in memoir, “Seeing the crab”
We want to protect ourselves from the reality of death…we say the wrong things
Lack of experience of death in the family (rise in modern health care facilities; good but disruption of support for the patient and family)

21. Communication in Palliative Care (Robert Buckman)
The changing role of religion (your soul will be with your maker may no longer bring comfort)
Patient’s fear of dying (not a single emotion; elicit from the patient what aspects of terminal illness are uppermost in his/her mind)

22. Communication in Palliative Care (Robert Buckman)
Factors originating in the health care profession
(don’t get the patient upset)
Fear of saying “I don’t know”
Fear of expressing emotion
Own fears of illness and death

23. 6-Step Protocol for Breaking Bad News (Robert Buckman)
Getting the physical context right
Finding out how much the patient knows (“what have you made of the illness so far?”
Finding out how much the patient wants to know
Sharing information
Responding to the patient’s feelings
Planning and following through

24. Helping Patients and Families
Attentive listening (allow person or family to tell story, vent, lament, etc., and
Tolerate short silences
Validate – if tears or angry outbursts, don’t attempt to stop either (allow the tears, use words Might say, “ let the tears come, you might need to cry, this is a huge loss”

25. Helping Patients and Family
Repetition and reiteration
(use the patients’ words in your response and repeat what the patient has said to show you understand what the patient has said)
Empathic response (you seem to be feeling…)
Communication is important from the first time you meet the patient to the last time

26. Helping Patients and Family
To help family grieve, might ask questions like:-
What do you like best about this person?
And what else… and what else … (help person talk things through)
What would you miss?

27. Helping Patients and family
Might also ask:
What is (or would be) lost?
What is (or would be) left?
What is (or might be ) possible?

28. Helping Patient and Family
You don’t need to take responsibility for fixing anything for anybody…not their feelings, not what they ought to do, etc., (don’t put unnecessary stress on yourself)
TAKE CUE FROM THE PERSON AND RESPOND TO WHAT IS BEING SAID (not what you think the person needs to hear or should know (not about your agenda)

29. Self-care for professionals
 Do not minimize the toll on yourself
Talk over feelings, thoughts with colleagues, friends, etc., whether you think it is bothering you or not
Nurture yourself (simple things like warm shower with a nice soap)
Do a fun thing for yourself weekly, eat properly, get enough sleep, exercise, etc.,