Transcript Document

Palliative care and terminal illness:
Grief, loss and communication
Linda Hadeed, PhD
Palliative Care Conference
October 2012
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
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
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)
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
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
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.
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
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
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
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.
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
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
Physical symptoms of trauma
Insomnia or nightmares
Being startled easily
Racing heartbeat
Aches and pains
Fatigue
Difficulty concentrating
Edginess and agitation
Muscle tension
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
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
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
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
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)
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)
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)
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
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
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”
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
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?
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?
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)
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.,