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Determining Medical Decision Making Capacity & Code Status Discussions
End of Life: Grieving and Bereaving
Andrea Chatburn, DO, MAWOMA Winter Seminar12.5.2015
No Financial Disclosure
ObjectivesRevisit grief theory & tool of mindful presenceExamine grief related screening tools Distinguish between typical, complicated griefDetermine when structured psychotherapy and pharmacotherapy is indicated for griefApply bereavement interventions to special populations
Awareness & Noting
Acknowledge the emotion that comes with the heavy topic of sorrow. 4
Wont be coveringSpecific grief resources for Military or Post-combat PTSD & bereavementSpecific grief, PTSD resources for RefugeesGrief & funeral traditions across cultures and world religion
Why talk about grief & bereavement?
Adds value study November JPM Susan Block. 65% of deaths take place in institutions6
ICU Bereave staff & family surveyDownar, J. et al. The desirability of an ICU Clinician-Led Bereavement Screening and Support Program for Family members of ICU Decedents. Journal of Critical Care. 29(2014) 311.e9-e16.Family64 contacted & 32 participated9 (28%) - complicated grief or prolonged grief disorder7 (22%) - social distress10 (31%) - professional support for emotional symptoms2 (6%) - professional support for social symptoms68% - wanted more support
Staff94 contacted & 57 participated85% reported providing emotional support at time of death56 (98%) willing to participate in formal bereavement screening and support program
2 teaching hospitals in Toronto- Surveyed ICU staff and family members at a mean of 7.4 months (2.2 SD) after patient death to measure symptoms of complicated grief, prolonged grief disorder and social difficulties. 19 were a spouse/ex-spouse, 6 were child, 3 were parent, 2 sibling, 1 another relative. 81% had a religious community, 81% Canadian, 2 from central/south America, 2 from Africa, 1 from Asia. 91% rated the overall quality of care as either good, very good, or excellent and 56% reported having to make a decision about life-sustaining treatment or CPR on behalf of the patient. Staff participants had mean age 41 (SD 10.4 yrs), 40 were physicians and 11 were nurses, 35% had no religious affiliation, others identified as Roman Catholic, Protestant, Jewish, Buddhist, Hindu and 1 other. 7
Barriers to Supporting Bereaved Family MembersNot knowing what to sayNot sure how to deal with emotionLack of knowledge about community resourceHigh clinical workloadLack of continuity or established relationship with the patient or family memberDownar, J. et al. The desirability of an ICU Clinician-Led Bereavement Screening and Support Program for Family members of ICU Descendants. Journal of Critical Care. 29(2014) 311.e9-e16.
Desires for bereavement supportTraining in how to support the bereavedList of available community resourcesDedicated time after the death and at a later date to provide supportDownar, et al.
Grief is centered in relationship
Sam Caplet Dont Let Go
The death of a loved one is lifes most universal stressor and 2.5 million people die each year in the US. The death of someone close to you remains one of the most intense, distressing and traumatic events a person will experience.10
WHO Guidelines for BereavementRecommend AGAINST offering structured psychological interventions to all bereaved adults or children (w/o mental disorder)Benzodiazepines should NOT be offered to bereaved adults or children (w/o mental disorder)Grief and mourning are natural responses to loss, most people navigate w/o clinical intervention
Wietse A., et al. WHO Guidelines for Management of Acute Stress, PTSD, and Bereavement: Key Challenges on the Road Ahead. PLOS Medicine. December 2014, Vol 11, Issue 12.
Both strong recommendationsNo evidence to support offering grief counseling to all bereaved adults and children- based on limited mental health resourcesPaucity of evidence about effectiveness of encouraging existing supportive cultural mourning practices for bereavementHowever international consensus guidelines specifically recommend building on existing practices
Molly FumiaI started missing you long before you were gone Ill keep loving you long after the memories bring you back
So what do we do? Start with story12
Grief TheoriesElizabeth Kubler Ross- 5 stagesKen DokaWilliam WardenAlan Walset*Teresa Randall*Integrated grief
45 years since On Death and Dying
Elizabeth Kubler Ross 196914
Create own image
Grief is related to all types of lossLoss of relationshipLoss of role (mother/sister/daughter)Loss of function- DebilityLoss of healthLoss of homeLoss of independenceLoss of job
Anticipatory Grief Starts at DiagnosisThe unknown
Expression of GriefEmotional responsePhysicalSocialSpiritualThought Process/Cognitive
Acute grief- shock, disbelief, intense separation distress, longing, sadness, self-blame/guilt, decreased engagement in life.18
Vincent van Gogh Old Man Crying
We need to be looking in our clinics for more than just tears. We need to listen to the stories patients tell us about how they are experiencing life after loss- their words will tell us how they experience grief when we ask them the question, how are you doing inside yourself right now?19
Georg Sander Tomb of a Mourning Woman
Doka asked do men and women grieve differently? turns out the answer is both yes and no. What he found was that people grieve differently, have different styles of grief but those styles are NOT gender based. 20
Intuitive grievers benefit from support groups Hospices offer21
Action- 5K, Ice bucket challenge, etc.
Instrumental grievers focus on action related 22
People remain connected with their loved ones. Necklace, picture, anniversary. Rather than acceptance & move on, Silverman Hickman & Boss a death ends a life, but not a relationship. The new grief theory is applicable for ANY loss, change, or challenge- loss of a job, change of relationship (child going off to school)
Ministry of Presence
William Warden. We bear witness to grieving, we sit with them in their dark night of the soul. We sit with, be present with. This encourages Wardens continuing bonds theory- sitting with the bereaved lets them know that they dont have to move on- they can just be.24
Continuing on with relationship after death can be found in legacy work. Legacy work is the work done by the patient or their loved ones with the intention of leaving their mark on the world. All people involved in legacy work benefit. Focus is on the narrative, story. Recording, letters/writing it down, pictures, hand prints. Legacy work doesnt fit everyone. **Hand out: love letter example of letter to family members25
Cueva de las Manas, Argentina by Xipe Totec39
Byock- 4 things that matter mostThank youPlease forgive meI forgive youI love you
Dignity TherapyChochinov- Manitoba. Life survey by patient & loved ones Gave a sense of purpose & meaning to lifeAssisted in living with grief
Hand out: life review questions28
Suffering and Meaning
Nessa Coyles study on Legacy work.29
Ethical WillZavaahValuesBlessingsLife lessonsHopes for future
Typical GriefNormal emotional reaction to lossResolves in < 6 monthsNo residual serious social, psychological or medical consequences
Interventions for All BereavedSupport by provider at time of deathContact in weeks to months after a deathCustomized bereavement care plan
Screening Tools Start with symptoms: Eating?Sleeping?5 item Brief Grief Questionnaire 19 item Inventory of Complicated GriefScore 25-30 significant symptomsScore >30 threshold for treatment research
Brief Grief Questionnaire012How much are you having trouble accepting the death of ____?How much does your grief still interfere with your life?How much are you having images or thoughts of ___ when they died or other thoughts about the death that really bother you?Are there things you used to do when ____ was alive that you do not feel comfortable doing anymore, that you avoid? Like going somewhere you went with them, or doing things you used to enjoy together? Or avoiding looking at pictures or talking about ____? How much are you avoiding these things?How much are you feeling cut off or distant from other people since _____ died, even people you used to be close to like family or friends?
When is psychotherapy indicated?
WHO guidelines suggest that although grief counseling is a popular intervention following bereavement, there is a lack of evidence that it is effective. However, the best studied treatment for complicated grief is targeted psychotherapy- specifically 16 week targeted Complicated Grief Therapy, which was significantly more effective than interpersonal psychotherapy. 35
When are prescriptions indicated?
Recommendation against offering benzodiazepines for acute stress symptoms INCLUDING INSOMNIA in the absence of a frank mental disorder.36
Complicated Grief (CG) or Prolonged Grief Disorder (PGD)Grief resulting in severe social, psychological, or medical consequencesPersists beyond 6 monthsSocial distress: marked by difficulties with ADLs, financial matters, and social interactions
Prolonged Grief DisorderLoss of a significant personSeparation distress: feelings of yearning that occur daily or cause disabilityAt least 5 specific cognitive, emotional or behavioral symptomsTiming >6 months since lossSignificant Social, occupational, or functional impairmentNot caused by other psychiatric disorderShear MK, et al. Complicated grief and related bereavement issues for DSM-5. Depression Anxiety. Feb 2011; 28(2):103-17.
Symptoms- PGDDiminished sense of selfDifficulty accepting lossAvoidance of reminders of lossInability to trust othersBitterness or anger related to lossDifficulty moving on with lifeEmotional numbnessFeeling that life is meaninglessFeeling stunned/dazed/shocked by the lossShear et al.
Complicated GriefLoss of a loved one >6 months agoAt least one symptom of acute grief present for longer than expected in the persons cultureAt least 2 of the following symptoms present for >1 mo. (see next slide)Duration: symptoms and impairment >1 mo.Impairment: significant social, occupational, or functional impairment caused by symptoms and not better explained as a culturally appropriate responseShear et al.
B. Symptoms of Acute Grief - CGPersistent intense yearningFrequent intense loneliness/emptinessRecurrent feelings of meaninglessness of life, or a desire to die in order to rejoin the deceasedFrequent intrusive thoughts about the deceased
Shear et al.
C. Symptoms in CG (2 or more)Rumination about the death and its consequencesDisbelief, inability to accept deathFeeling of shock, numbnessBitterness or anger related to lossInability to trust othersExperiencing pain/symptoms that deceased person experiencedIntense reaction to memories/reminders of lossExcessive avoidance/proximity seeking relevant to deceased
Shear et al.
CG New to DSM-5Persistent Complex Bereavement DisorderSubtype of :Other specified trauma Stressor-related disordersEstimated prevalence 7% of bereaved peopleSymptoms out of proportion or inconsistent with cultural, religious, or age-appropriate norms
Risk factors for Complicated GriefPre-loss factors:FemalePreexisting trauma (particularly childhood)- ACEPrior lossInsecure attachmentPreexisting mood and anxiety disordersNature of the relationship
Simon, N. Treating Complicated Greif. JAMA July 24, 2013 Vol 310, No 4. p 416-423
Loss related Risks for CGRelationship and caretaking rolesSpousesMothers of dependent childrenCaretakers for chronically illNature of the death itselfViolent, sudden, prolonged, suicideMortality in Intensive Care Unit34 to 67% of surviving family members have CG
Other Risk FactorsSocial circumstancesResources available after deathUnknown: Lack of information/understanding of the circumstances of the death eventInterference with natural healing process:Inability to follow usual cultural mourningAlcohol or substance abuseLack of social supportSimon, N.
Differential Dx for CGTrigger for Comorbid Major Depressive Disorder, PTSD, Substance AbuseOf patients with CG:25% had no comorbid conditions55% had comorbid Major Depressive Disorder49% had PTSD36% had both MDD and PTSDDifference btn CG and PTSD: Fear
When to Intervene?
Persistently high sx severityLack of temporal involvement in the grief responseFunctional ImpairmentTreatment-seeking behaviorsHopelessnessSuicidal ideation or behaviorsSimon, N.
Targeted Complex Grief TherapyMotivational interviewing & CBT techniquesDiscussing positive and negative memories of the deceasedRepeatedly retelling the story of the deathAddressing errors in thoughts- cognitive restructuringCommunication with the deceased exerciseEncourage reduced avoidance behaviorGoal settingSSRI improved adherence to therapy
10 weeks group, 4 weeks individual CBT. Another trial used a 5 week internet based intervention using the same techniques. Medication specifically indicated for patients who have persistent sym
When are prescriptions indicated?
PublicDomainPicturesPersistent symptomsSignificant comorbiditiesSuicidal ideation or behaviors
Recommendation against offering benzodiazepines for acute stress symptoms INCLUDING INSOMNIA in the absence of a frank mental disorder.51
Grief & Bereavement in Special PopulationsPerinatal lossGrieving children and teensParents who have lost a childMortality risk in older couplesProvider Grief
Listen to the story. 53
Reji Jacob Tears
MyStuart Helping Hands in Ashville
You are not alone. Focus on self care. As a physician family member the grief is compartmentalized and you experience it later.
BibliographyBruinsma, S., et al. Risk Factors for Complicated Grief in Older Adults. Journal of Palliative Medicine. Vol 18, No. 6, 2015. p 438-444.Doka, K. and J. Davidson. Living with Grief. Who We Are, How We Grieve. Hospice Foundation of America, Philadelphia, 1998.Downar, J. et al. The desirability of an ICU Clinician-Led Bereavement Screening and Support Program for Family members of ICU Descendants. Journal of Critical Care. 29(2014) 311.e9-e16.Hirano, Kummet, Schlenker. Grief and Bereavement. Presented at AAHPM/HPNA 2015 Annual Assembly. Philadelphia, PA.Iglewicz, A., et al. The Removal of the Bereavement Exclusion in the DMS-5: Exploring the Evidence. Curr Psychiatry Rep (2013) 15:413.Kubler-Ross, E. On Death and Dying. MacMillan Publishing Co., Inc. New York, 1969.Shear, MK. Complicated Greif. N Eng J Med 372;2 Jan 8 2015. Shear MK, et al. Complicated grief and related bereavement issues for DSM-5. Depression Anxiety. Feb 2011; 28(2):103-17.Wietse A., et al. WHO Guidelines for Management of Acute Stress, PTSD, and Bereavement: Key Challenges on the Road Ahead. PLOS Medicine. December 2014, Vol 11, Issue 12.