GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Grief, Psychosocial, and Spiritual Care Michelle Weckmann MD MS FAAHPM University of Iowa Hospitals & Clinics Iowa City, IA
[email protected]
Disclosure • I’m not really a grief counselor. I just play one on TV. • I have psychological and social issues, as well as cultural baggage, but no financial conflicts of interest.
Session Objectives • Discuss normal and complicated bereavement • Review key psychosocial factors in HPM • Review important spiritual and religious factors in HPM =additional information-slide won’t be discussed
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Grief is the normal, natural response to the experience of loss.
Inconsolable Grief, Ivan Kramskoy, 1884
• Grief: thought and felt on the inside after a loss • Mourning: outward expression of thoughts and feeling about a loss • Bereavement: period after a loss during which grief is experienced and mourning occurs
Modern Societal Perception of Grief • • • •
“Successful” mourning is to “let go” Bereavement is a series of completed tasks Recovery is the return to normalcy Grief is about being knocked off balance (losing homeostasis) • Little attention to the spiritual nature
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Types of Losses • • • • • • • •
Loss of some aspect of the “self” Age related losses Symbolic losses Loss of a loved one Loss of a treasured object Geographic loss Seasonal loss Career loss
Common Response to a Loss • Shock, numbness, denial, and disbelief • Disorganization, confusion, searching, and yearning - “going crazy” • Anxiety, panic, and fear • Explosive emotions
Bereavement Increases Risk for: • • • • •
Mental and physical illness Adverse health behaviors (smoking, drinking, eating) Functional impairment (social, family, occupational) Inappropriate health services use Death (natural and suicide)
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Physical Responses to Grief • • • • • • • •
Weakness/fatigue Rapid heartbeat Increased blood pressure Muscular tension Dizziness Nausea Chest tightness Dry mouth
• • • • • • • •
Feeling feverish Clammy hands Shortness of breath Bowel changes Headaches Sleep changes Appetite changes Unexpected tears
Emotional Reponses to Grief • • • • • • • • •
Shock, disbelief Panic Sadness Crying Emptiness Yearning Despair Anxiety Anger
• • • • • • • • •
Mood changes Emotional outbursts Sorrow Loneliness Shame Fear Peace Comforted Frustration
Mental Responses to Grief • • • • • • • • •
Memory loss Confusion Denial Disbelief Disorganization Poor concentration Dreaming Preoccupation with past Sense of presence of deceased
• • • • • •
Difficulty making decisions and problem solving Searching for deceased Difficulty keeping commitments Difficulty coping with changes Dreaming Difficulty communicating
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Spiritual Responses to Grief • • • • •
Questioning meaning of life/death Comfort in religion Finding religion empty/meaningless Anger at God Searching for deceased
• • • •
Feeling presence of deceased Feeling punished Feeling rewarded Questioning trustworthiness of God
Mrs. L • 68 y/o married female from China • Metastatic breast cancer • Enjoys spending time with her church, baking, and gardening
ARS Question 1 Stem Mrs. L is seen for a palliative care consult 2 months after the death of her twin sister from a sudden heart attack. She feels “down” at times, particularly when she is alone, but she is able to enjoy visits from friends and family. She is gardening daily and going to church. She is hopeful that she will have more “good life” in front of her. She says she misses her sister and wakes up every morning thinking about her. She has heard her sister speaking to her from other rooms which does not bother her and feels comforting.
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
ARS Question 2 Options What is the appropriate next step in management for her symptoms? A. B. C. D. E.
Refer her to a therapist or psychologist Start risperidone Reassure her that this is normal grief Start citalopram Call in a chaplain or spiritual counselor
Normal Grief • 80-90% of survivors have uncomplicated grief reactions • Some common reactions
– Denial, anger, separation distress, depression
Kubler-Ross Stages of Grief Denial Anger Bargaining Depression Acceptance
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
5 Stages of Grief • • • •
233 bereaved Non-traumatic deaths Surveyed every month for 2 years Looked at 5 stages of grief (Likert scale) – Disbelief – Yearning – Anger – Depression – Acceptance
An empirical examination of the stage theory of grief, by Maciejewski PK, Zhang B, Block SD, Prigerson HG, 2007, JAMA, 297(7), 716-723.
5 Stages of Grief Disbelief-decreases over time Yearning- peaks at 3-4 months Anger- peaks at 6 months Depression- peaks 4-8 months Acceptance-increases over time
2 Grief Theories 10
Denial Anger Bargaining
Months
• • • • •
8 6 4 2 0
Depression Acceptance
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
“You can’t go around your grief, or over it, or under it- you must go through it”
Dr Wolfelt. Understanding your grief: ten essential touchstones for finding hope and healing your heart
Normal (Uncomplicated) Grief Includes feelings of: Sadness, upset But by 6-12 months after loss can: • • • • •
Accept loss as reality Find meaning/purpose Feel future holds potential for fulfillment Enjoy leisure, engage in productive activities Maintain connections
• Identity intact • Explore new roles and relationships • Maintain self-esteem • Function without signs of impairment
DSM-5 • • • •
Consider response to a loss when evaluating for depression Bereavement related depression has a worse outcome than either alone No longer a V-code for bereavement Persistent complex bereavement disorder
– 309.89 Other specific trauma- and stressor-related disorder – Considered a condition for further study
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Depression and Grief •
Depressive symptoms are common – 42% at 1 month – 16% at 1 year (meet criteria for MDD)
• •
Medication treatment relieves symptoms of depression but not grief The Post-Bereavement Phenomenology Inventory (PBPI) may be helpful (not validated) – Which fits you better: • When friends or family call or visit, and try to cheer me up, I don’t feel anything, or I may feel even worse • …I usually “perk up” for a while and enjoy the social contact Pies R: After bereavement, is it “normal grief” or major depression? The PBPI: A Potential Assessment Tool. Available at: www.psychiatrictimes.com/blog/pies/content/article/10168/2035804.
Normal Grief vs Depression Normal Grief
Depression
Responds to comfort and support
Does not accept support
Often openly angry
Irritable and may complain but does not directly express anger
Relates depressed feeling to loss experienced
Does not relate feelings to a particular event
Can still experience moments of enjoyment in life
Exhibits an all prevailing sense of doom
Exhibits feelings of sadness and emptiness
Projects a sense of hopelessness and chronic emptiness
May have transient physical complaints
Has chronic physical complaints
Expresses guilt over some specific aspect of the loss
Has generalized feelings of guilt
Has temporary impact upon self esteem
Loss of self esteem of greater duration
Widera AFP 2012; Block J Palliat Med. 2006
Signs of Complicated Grief • Minimal or total lack of emotional expression regarding the loss • Prolonged inability to recognize a loss has occurred • Extreme reactions that persist over time (usually anger or guilt) • Marked or gradual change in health • Prolonged depressive symptoms • Over-activity without a sense of loss
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Phenomenology of Complicated Grief •
Low rate of diagnostic overlap with MDD, GAD, PTSD
•
Horowitz 1997 (evaluated 90 bereaved) – At 14 months • 41% of bereaved met criteria for complicated grief • 21% (of the 41%) meet criteria for MDD
•
Prigerson 1995 (150 community bereaved, untreated) – At 13 months • 36% depressed • 7% complicated grief • 20% anxiety
•
Shear 2011 (782 bereaved) – 5 question screen
– 30 question screen • Intrusions • Avoidance • Failure to adapt to loss
Persistent Complex Bereavement Disorder: proposed criteria A. Death of a close relationship B. 1 (or more) symptoms on more days than not to a clinically significant degree for >12 months (adults) >6 months (kids) 1. 2. 3. 4.
Persistent yearning or longing for deceased Intense sorrow Preoccupation with deceased Preoccupation with circumstance of death
C. (next page) D. Causes significant impairment E. Reaction is out of proportion or inconsistent with norms
Persistent Complex Bereavement Disorder: proposed criteria C. 6 (or more) on more days than not 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12.
Marked difficulty accepting death Disbelief or emotional numbing Difficulty with positive reminiscence Bitterness/anger related to loss Maladaptive self-appraisals (eg self-blame) Avoidance of reminders of loss Desire to die to join deceased Difficult trusting Feeling alone or detached Feeling life is meaningless or empty Confusion about life- role (feeling part of self died) Difficulty pursuing interests or planning for future
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
ARS Question 2 Stem You ask Mrs. L about her husband. She says that they are close and that he can’t imagine life without her. He does not have a history of depression or anxiety, but he has seemed sad and fearful at various times during her illness. He is religious and has strong beliefs in heaven and hell. He lost his mother when he was seven and was raised by an aunt. You are concerned that Mrs. L’s husband may experience complicated bereavement after her death.
ARS Question 2 Options What element of his history is most predictive of complicated bereavement in his future? A. B. C. D.
No children for close family support Belief in an afterlife including hell Low mood experienced during wife’s illness Childhood experience of mother’s death
Risk Factors for Complicated Grief Underlying psychobiological dysfunction • • • • • • • •
History of depression or anxiety Dependent relationships to deceased Kinship relationships (parents/spouse) Parental loss, abuse, or serious neglect in childhood Poor parental bonding Separation anxiety in childhood Preference for lifestyle regularity (adverse to changes) Lack of preparation for death – Prepared caregivers 2.4 times less likely to have complicated grief
Type of death • •
Loss by disaster or trauma Shear, Curr Psychiatry Reports. 2013; Ghesquiere Loss of a child J Soc Work End Life Palliat Care. 2011
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Protective Factors • • • • • • • • •
Male gender Higher education level Higher frequency of religious attendance More robust social network Death at home Positive interactions with professional providers Older age Sense of preparedness for the death Randy Pausch’s final farewell – https://www.youtube.com/watch?v=mIysXLiA5s0
Complications of Complicated Grief: Mental Health • • • • •
Increased suicidality (11.3X greater) MDD 21-52% co-occurrence Increased risk for GAD PTSD 30-50% co-occurrence Change in food, ETOH, tobacco use Prigerson, Psychiatry Res. 1995
Complications of Complicated Grief: General Health • •
• •
Increased hypertension (10X greater) Cardiac problems (19% vs 5%) – 5/26 vs 5/97 Increased incidence of cancer diagnosis (15% vs 0) – 4/26 vs 0/97 Functional disability Work, social, family dysfunction
•
Bereaved with CG less likely to use any health services
•
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Prevention of Complicated Grief? • • • • •
Link care-givers to home based care Emphasize empathetic listening and expressions of care Increase social support Refer to mental health services if indicated Family-focused grief therapy (starting before the death)
•
Institute routine screening of high risk bereaved – Inventory of Complicated Grief (Prigerson) – 5 item Brief Grief Inventory (Shear) Prigerson, Psychiatry res. 1995; Shear, JAMA 2005
Complicated Grief: Distinctive Clinical Course and Treatment Response •
If untreated, symptoms can last for years – 1/3 of all outpatients in Canadian psych clinic meet criteria for CG, average time from loss 10 yrs
•
Strongly consider psychiatry referral
•
Treatment focus: – Understanding of the loss and its impact on the survivor's sense of self and future – Mastering concrete tasks performed by deceased – Encouragement to develop new routines, new relationships, to practice good self-care
Piper, Psychiatr Serv. 2001
Pharmacology for Complicated Grief • Majority of anti-depressant trials are disappointing – No good trials have been completed
• Appears to be most beneficial if there is a co-morbid depression or anxiety disorder – Depression/anxiety symptoms improve
• May have a role in facilitating grief-therapy completion – 91% on anti-depressants completed treatment vs 54% not on antidepressants (Simon, Psychiatry Res. 2008) Mancini , Curr Opin Psychiatry. 2012; Wittouck, Clin Psychol Rev. 2011; Reynolds, Am J Psychiatry. 1999
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Psychotherapy for Complicated Grief • Group Psychotherapy
• Cognitive Behavioral Therapy (CBT) –Theorize CG is poor internal integration of the loss
–Manualized group therapy can decrease grief symptoms
–Focus on exposure and cognitive restructuring
–Interpretive therapy (help bereaved develop tolerance to the ambivalent feeling often felt towards the person lost)
–Small studies have shown benefit over supportive therapy
• Exposure treatment most effective
• Behavioral activation –25 patients with CG saw improvements in CG, Depression, PTSD sx after 12 weeks
• Interpersonal Therapy (IPT) –Focuses on role of relationships and life transitions
Papa, Behav Ther. 2013; Kersting, Psychother Psychosom. 2013; Wittouck, Clin Psychol Rev. 2011
Complicated Grief Therapy • Combination: – Interpersonal therapy (IPT) for depressive symptoms
– Cognitive Behavioral Therapy (CBT) for trauma symptoms – Motivational Interviewing (MI) to foster alliance & deal with ambivalence
•
Ask bereaved to “revisit” the death experience
•
2005 study looked at 95 pts with CG (1/2 on antidepressants) –
Randomized to CGT or IPT for 16 session
–
51% improved with CGT vs 28% improved with IPT
–
Both groups showed decreased depression and anxiety scores
–
Provocative but not statistically significant • Parents who lost a child 17% CGT, 28% IPT • Violent death poor response to IPT (13%)
Wetherell, Dialogues Clin Neurosci. 2012
Internet Based Approaches •
CBT treatment using web and email exercises – Exercises related to exposure and cognitive restructuring – Did better than a “waiting” control with less anxiety and grief symptoms (maintained at 18mo follow-up)
•
Effects of writing – Largest reduction in grief symptoms in group instructed to examine the possible benefits of their loss
•
Psycho-educational videos normalizing grief reactions – Targeted all recently bereaved – Self-reports of improvement in attitudes and anxiety Wagner, Cogn Behav Ther. 2007
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Outreach to Bereaved • • • •
•
Express sorrow for the loss Invite discussion of what happened Schedule a follow up visit Monitor for known problems – Symptoms of grief, depression, trauma/anxiety, suicidality – Blood pressure – Sleep disturbance – ETOH, tobacco, drug use, eating changes – Social isolation Need to take the initiative
What Not to Say: • • • • •
“It was for the best” “It was his time to go” “I know how you feel” “She is happy now” “You’re strong enough to deal with it”
•
“She lived a long life”
– Try “hope you find the strength…”
•
“How are you?” – Unless you have time to listen
• •
•
“It’s God’s will” “Sorry I brought it up, let’s talk about something else” “You should be getting over it by now”
What to Say: • “I’m sorry s/he’s gone” • “I can’t imagine what you are going through” • “What are you remembering about your loved one today?” • Mention the deceased by name and talk about him/her
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Grief and Children •
Respect parents as experts on their own children
•
Most discussions occur between parent and child not clinician and child
•
Worse case: child overhears a parent is dying
•
Encourage age-appropriate, honest conversation throughout the illness
•
Grief impacts parents: (660 parents with advanced cancer)
– Always get parents input before talking with children
– More likely to have panic and anxiety – More likely to prefer more aggressive treatment – Less likely to engage in advance care planning
Video • Children and Grief Film Trailer by Professor Child
©2012 Professor Child. All rights reserved. Learn more about this documentary and Professor Child at professorchild.com.
Child Grief • Emotional experience of grief shifts as children move through normative development • Children’s grief will likely emerge in different ways as they grow up
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Developmental Understanding of Death Infants and toddlers (0 to 2 years)
Pre-schoolers (3 to 6 years)
•
•
•
Developmental: establishing trust and attachment Impact – – –
•
Don’t understand finality but feel absence Distressed by disruptions in routine Influenced by distress/grief of caregivers
•
– –
•
Approach/guidance –
Developmental: egocentric, associative logic, magical thinking Impact
Approach/guidance –
Maintain sense of security and predictability
Don’t understand irreversibility of death May attribute death (or survivor distress) to their own actions
–
Use concrete, discrete examples (don’t say go to sleep and not wake up) Have patience and communicate openly (discuss guilt)
Developmental Understanding of Death School-age children (7 to 12 years)
Adolescents (13 and above)
•
•
•
Developmental: mastering skills, fairness, cause and effect logic, peer relationships Impact – – –
•
Understand finality May struggle with spiritual/abstract issues and unfairness of loss May ask blunt, uncomfortable factual questions
Approach/guidance –
Inform appropriate school personnel
•
Developmental: working on separationindividuation, identity formation Impact – –
•
Understand finality May focus on personal effect of loss (self-involved)and struggle with existential issues
Approach/guidance – –
Monitor for taking on too many “adult” responsibilities/behaviors Open and honest discussions of options
Terminal Phase of Parental Illness •
Children experience – Heightened psychosocial distress (depression, anxiety) – Traumatic responses (emotional and behavioral problems) – Anticipatory grief
•
After the death, children normally make efforts to maintain a connection to their deceased parent as a way to effectively cope with their loss
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Issues Near Death •
Inpatient care settings – Use caution before allowing a visit with an agitated or delirious patient – Prepare, address concerns/worries prior to visit – Debrief
•
Patients at home – Consider a room with a door – Discuss medical changes and fears
•
After Death – Allow participation as desired – Young children may find internment disturbing
Outcomes in Children • Nonspecific, subclinical, and transient behavioral disturbances are common in the 1st year • Higher rates of psychiatric problems (1 in 5) • Risk Factors: – Pre-existing psychosocial risk factors – Lower socioeconomic status – Depressed surviving parent
• Preventative interventions decrease behavioral symptoms – Increase effective parenting practices (warmth, acceptance, encouragement of expression of grief, effective discipline)
Summary • Most grief is uncomplicated and can have a number of distressing physical and mental effects which can linger for years • Children have different needs depending on their age and developmental status • Complicated grief is distinct from MDD, GAD, PTSD and should be considered if there is still significant impairment 612 months after the loss • Complicated grief has major implication on physical and mental health
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Total Pain
Suffering • Other names: – Agony, torture, pain, distress • Definition: – The bearing of pain, inconvenience, or loss; pain endured; distress, loss, or injury incurred • Sources: – Physical, emotional, spiritual, psychosocial Cassells. The Nature of Suffering and the Goals of Medicine.
The National Consensus Project Clinical Practice Guidelines for Quality PC •
Domain 5 (spiritual, religious, existential)
– “spiritual and existential dimensions are assessed and responded to based on the best available evidence, which is skillfully and systemically applied” •
Domain 6 (cultural)
– “the PC program assesses and attempts to meet the needs of the patient, family, and community in a culturally sensitive manner” National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. 2nd ed. Pittsburgh, PA: Author; 2009.
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
5 Basic HPM Interventions 1) Address physical symptoms and concerns 2) Address psychosocial problems • • • •
Physical Symptoms – disfigurement, function loss Emotive (and cognitive) symptoms Autonomy related issues – disclosure is best Communication, contribution to others, closure of life affairs related issues • Economic burden • Transcendent and existential issues
5 Basic HPM Interventions 3) Communicate effectively • Use the IDT, recognize cultural norms • Encourage expression through story, art, music
4) Provide empathic presence • Safe, non-judgemental • Accept uncomfortable emotions • Arrange for meaningful spiritual ritual, community, prayer
5) Foster Hope • Set small goals, identify sources of meaning UNIPAC 2 table 3
First Steps • Address physical symptoms and concerns • Be aware of psychosocial, spiritual and cultural challenges • Don’t be afraid to ask questions – Take a psychosocial and spiritual history
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Questions to Explore Psychosocial Issues (PEACE Tool) • • • •
Physical Symptoms Emotive (and cognitive) symptoms Autonomy related issues Communication, contribution to others, closure of life affairs related issues • Economic burden (practical issues) • Transcendent and existential issues
Autonomy • We can’t take away hope • Non-disclosure associated with a decreased QOL and increased rate of depression in survivors • Sample questions – Do you feel in control of your care? – Do you feel heard/listened to? – What are you hoping for? – What worries you the most? Hagerty. J clin onc 2005 23;1278-88
Communication and Completion of Life Affairs • • • •
Common reason for suffering Life-review can help improve peaceful acceptance Dignity therapy Sample questions – – – –
How would you want to be remembered? What do you feel most proud of? Is there anyone you can talk with about your fears/plans? What do you still want to accomplish in your life?
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
ARS Question 3 Mrs L’s cancer has progressed and she has decided to enroll in hospice. Your social worker mentions dignity therapy. What can you tell Mrs L about it? A. By processing in group with people with similar illness, patients work together to find personal dignity B. It is important not to record or transcribe the encounter to protect anonymity and increase participation C. There is little evidence to support benefit D. Sadness is improved more than with standard palliative care
Key Themes in Dignity Therapy • • • • • • •
Generativity Continuity of self Role preservation Maintenance of pride Hopefulness Aftermath Care tenor Ferrel JCO August 20, 2005 vol. 23no. 24 5520-5525 Hall et all JPSM April 2013
Economic Burden • 1/3 of families report loss of all or most savings due to illness and caregiving • Can impact healthcare decisions • Sample questions – – – –
Are you worried about financial burden? Has you illness created a financial strain? Do you worry you may become a burden to your family? How much help do you need with ADLs?
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Transcendent and Spiritual Issues • • •
Most cancer patients endorse the importance of religious coping, yet often feel there is insufficient spiritual support Unmet religious needs make a patient more likely to receive aggressive care and report lower QOL near death Questions: – Is faith (spirituality) important to you in this illness? – Are you at peace? – Where do you find the strength to cope with your illness? Are you suffering? Balboni et al. J Clin Oncol. 2010;28(3):445
Interaction of Psychosocial Issues and Caregiving • Patient “suffering” is a significant stressor for caregivers • Caregivers with unmet psychosocial needs have lower QOL scores and increased work limitations • Caregivers often reluctant to bring up psychosocial concerns
Guidelines for the Management of Psychosocial Distress • • • • • • •
Do the screening and ask the questions! Psycho-education Help patients identify sources of meaning and purpose Validate the expression of feelings Good management of physical symptoms Identify and treat psychiatric illness Referrals - use your interdisciplinary team – Dignity therapy
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Purnell Model of Culture • Primary characteristics – Age, generation, nationality, race, color, gender, religion
• Secondary characteristics – Education and socioeconomic status, occupation, military experience, political beliefs, area of residence, enclave identity, marital and parental status, physical characteristics, sexual orientation/gender issues, reason for migration Long. J Clin Oncol. 2010;28(3):445
Definitions of Culture • Not just race, ethnicity, religion • Constantly evolving • Includes knowledge, belief, arts, spirituality, morals, laws, customs, capacities, and habits shared by a society • Influences how a person interacts with the healthcare system
3 Dimensions of EOL that Vary Culturally • Communication of bad news • Locus of decision making • Attitudes towards advanced directives and EOL care
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Cross Cultural Interview Questions “Some people want to know everything about their medical condition, and others do not. What is your preference?” “Do you prefer to make medical decisions about future tests or treatments yourself, or would you prefer that someone else make them for you?” “Is there anything that would be helpful for me to know about how your family/community/religious faith views serious illness and treatments?”
Cross Cultural Solutions • Ask patients directly about cultural issues – do not assume • Use trained translators • Clarify who should receive the information and make the decisions • Develop rapport by demonstrating an interest in their cultural heritage
Use of Interpreters • •
•
2011 study with 78 participants (immigrants with newly diagnosed cancer) 65% of interpreters vs 50% of family members were equivalent to original speech – No difference with telephone vs in-person Non-equivalent interpretations – 70% inconsequential or positive – 10% may cause misunderstanding – 5% tone was more authoritarian – 3% more certainty was conveyed Butow et al. J Clin Oncol. 2011 Jul 10;29(20):2801-7. Epub 2011 Jun 13.
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Interpreter tips • Ideally, don’t use a family member • HIPPA training and some medical knowledge • Orient translator to purpose of the encounter before the encounter • Request a literal, word-for-word translation • Make a complete statement, speak in second person – Eg. “where is your pain?” not “can you ask him where it hurts?”
• Look at the patient when talking (not the translator)
Transcendent and Spiritual Issues • Most cancer patients endorse the importance of religious coping, yet often feel there is insufficient spiritual support • Unmet religious needs make a patient more likely to receive aggressive care and report lower QOL near death • Questions: – Is faith (spirituality) important to you in this illness? – Are you at peace? – Where do you find the strength to cope with your illness? Are you suffering? Balboni et al. J Clin Oncol. 2010;28(3):445
Spirituality: Definitions •
Religion – Specific fundamental set of beliefs and practices generally agreed upon by a number of persons or sects – The form: tradition, doctrine, rites and rituals
•
Spirituality – The content: a personal experience associated with an individual's personal quest to rediscover from within this realm their essence and who they really are – Beliefs, values and practices that relate to the search for existential meaning, purpose, or transcendence which may or may not include a belief in a higher power
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Spirituality Assessment Questions • How have you made sense of why this is happening to you? • What provides you with strength and hope? • What role does faith and spirituality play in your life? What role has it taken in facing difficult times in the past? Now? • What type of spiritual or religious support do you desire? • What is your philosophy/belief about life?
Spiritual Assessment Tools 9 tools validated in PC cross-cultural populations 1. 2. 3. 4. 5. 6.
Beck Hopeless Scale Existential loneliness Questionnaire Existential meaning Scale (EMS) Ironson-Woods Spirituality/Religiousness Index (I-W SR Index) McGill Quality of Life Questionnaire (MQOL) Measuring the Quality of Life of Seriously Ill Patients Questionnaire (MVQoLI) 7. Palliative Outcome Scale (POS) 8. Quality of Life of Seriously Ill Patients Questionnaire (QUAL-E) 9. World Health Organization’s Quality of Life Instrument-HIV Pain Symptom Manage. 2011 Oct;42(4):604-22. Epub 2011 Jun 2. A psychometric evaluation of measures of spirituality validated in culturally diverse palliative care populations. Selman L, Siegert R, Harding R, Gysels M, Speck P, Higginson I
FICA Spiritual Assessment Tool Questions about: • Faith, beliefs and meaning • Importance (in life and in medical care) • Community • Address (questions about your role in helping)
Puchalski C, Romer A. Taking a spiritual history allows clinicians to understand patients more fully. J Palliat Med. 2000; 3(1):129-137
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Guidelines to Manage Spiritual Concerns at EOL • • •
Assess and treat “total” pain Assess and document a plan of care that includes spirituality Use active listening and a supportive dialogue – Be fully present – Relationship-focused care
• •
Utilize the interdisciplinary team Make meaning – Legacy and leave taking – Transcendence
Hoping for a Miracle • Belief in miracles common-(79% Pew forum) – 61% believe PVS could be saved (Jacob Burns) – 57% believe divine intervention could save a person even when told ‘futility had been reached’
• What is the meaning of ‘hoping for a miracle?” • Does the belief influence medical decision making? Widera et al JPSM 2011
AMEN Responses to Miracle Statements • A (affirm) – “Mrs L, I am hopeful, too.”
• M (Meet the family/pt where they are) – “I join you in hoping (praying) for a miracle”
• E (Educate as a medical provider) – “and I want to speak with you about some medical issues”
• N (No matter what) – “no matter what happens, I will be with you every step of the way.” Cooper et al, J Oncol Pract. 2014 Jul: (1094) PMC4870587
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
ARS Question 4 You visit Mrs L at home and as you get ready to go her husband asks you if you will pray with him. You: A. pray with him, even if it makes you extremely uncomfortable due to his belief system B. pray with him if you feel comfortable doing so C. offer to lead the prayer to ensure it reflects your beliefs D. politely explain that prayer is not part of your role as a physician
Praying with Patients • Some patients may request – Can be a way to increase trust and rapport
• Never feel obligated to pray with patients • Never coerce a patient into praying or into accepting the prayers of the clinician – Can decrease trust
Muslim Faith - EOL • God has promised eternal life – the angel of death comes for all and death should be viewed positively • Deeds on earth determine the afterlife, especially belief state at the time of death • Rituals: – Have affairs in order – Remove unwanted hair, clean the body, wear clean clothes – Recite the Quran, ask forgiveness and profess faith to protect the dying person
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Hindu Faith - EOL • Life is lived with awareness of death – spiritual preparation is key and God's name is on the lips at the time of death • Death is entered into voluntarily – suicide can be viewed as acceptable among the very old or those who are suffering • Reincarnation • Rituals: – – – –
Chant or read from sacred books during death Prefer to have dying person with head to the north, as close to the ground as possible Water from the Ganges and the tulsi leaf in the mouth White is worn at funerals which are often within 24 hrs
Jewish Faith - EOL • Life valued above all – hastening death is never permitted even to prevent suffering, all forms of suicide are as well • Death is natural - part of God's plan • Orthodox may not recognize brain death, may not withdraw measures to sustain life • Ritual: – Prayers, candles, sitting Shiva for 7 days, torn clothes to express grief – Burial within 24hrs (Sabbath problems)
Christian Faith - EOL • Life is a gift of God – variability in views on withdrawal of life support • Making peace with God before death • Ritual: – Confession (Catholic), SOS, readings and prayers with clergy visit – Funeral ~ 3 days after death in a church or funeral home
GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Buddhist Faith - EOL • Life does not end, but shifts in form • Impermanence is emphasized, as is the natural process of life and death • Ritual: – Chant at bedside is important – Visitation from monks – Wait 3-8 hours after death before touching the body
Summary • Psychosocial issues have a large impact on “total pain” and suffering • Need to consider cultural and spiritual issues • Knowing the cultural norms can be helpful but remember each patient/family is unique • Ask questions!
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GRIEF AND BEREAVEMENT AND SPIRITUAL CARE
Questions? Please fill out a card for a response during the question and answer session at the end of the day.
Further Questions after the course?
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