Palliative care and terminal illness: Grief, loss and communication Linda Hadeed, PhD Palliative...

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 illnessesFocus – to provide patients relief from pain, and stress of a serious illnessGoal - to improve quality of life for both the patient and the familyTeam 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 treatmentTime for close communicationHelp navigate the healthcare systemGuide with difficult and complex treatment choices

PALLIATIVE CARE

Emotional and spiritual support for patient and family – care for mind, body and spiritGenerally the team works closely together to provide what is neededDifferent from care to cure illness (curative treatment)

PALLIATIVE CARE

Serious illness makes patients and families feel lonely, angry, scared, or sadMay feel that care [treatment] doing more harm than goodPalliative 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 servicesemotional supportspiritual resources for people who are in the late stages of an incurable illnessHelps 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 controlMedical supplies and equipment, as needed.

Hospice Care

Counseling and social supportServices 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 runningGenerally, hospice care is free of chargePrimary 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 unexpectedlyYou were unprepared for itYou felt powerless to prevent itIt happened repeatedlySomeone was intentionally cruelIt happened in childhoodSERIOUS 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 eventEarlier traumasCoping 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 illnessWhether 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


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)


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 thingsLack of experience of death in the family (rise in modern health care facilities; good but disruption of support for the patient and family)


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)


Factors originating in the health care profession(don’t get the patient upset)Fear of saying “I don’t know”Fear of expressing emotionOwn fears of illness and death

6-Step Protocol for Breaking Bad News(Robert Buckman)

Getting the physical context rightFinding out how much the patient knows (“what have you made of the illness so far?”Finding out how much the patient wants to knowSharing informationResponding to the patient’s feelingsPlanning and following through

Helping Patients and Families

Attentive listening (allow person or family to tell story, vent, lament, etc., andTolerate short silencesValidate – 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 yourselfTalk over feelings, thoughts with colleagues, friends, etc., whether you think it is bothering you or notNurture yourself (simple things like warm shower with a nice soap)Do a fun thing for yourself weekly, eat properly, get enough sleep, exercise, etc.,

Palliative care and terminal illness: Grief, loss and communication Linda Hadeed, PhD Palliative...

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