Presentation on theme: "End of Life Issues: Death and Dying / Grief and Loss"— Presentation transcript:
1End of Life Issues: Death and Dying / Grief and Loss Sally Schwab, Ph.D., C.S.W.Clinical Assistant Professor of MedicineWelcome to everyone.
2Why is This Topic Important? 60% of people in this country die in a hospital5-10% of the population lose a relative each yearDeath/loss is a major cause of adverse health effects: the widowed have higher death rates compared to married couplesDeath is a taboo subjectThere are many misperceptions re: dying and mourningPhysicians are not taught how to talk about end of life issues
3Objectives: By the end of today, you will be able to: Define the protocol for delivering bad newsDemonstrate helpful ways to communicate with patients who are dyingDefine the terms mourning, grief and bereavementIdentify the tasks of mourningDescribe the different ways people mournRecognize normal and abnormal aspects of mourningDescribe the role of the physician re: dying patients and their families
4The Role of the Physician Getting to know your patientDiagnosis / prognosisDelivery of newsCollaborating with your patientUnderstanding your patient’s wishes and valuesManagement of communication of informationManagement of disease, treatment, pain, deathDiscussion of advanced directives
5Definition of Bad NewsAny news that adversely and seriously affects an individual’s view of his or her future.Bad news is not only about cancer or death
6Breaking Bad News Breaking bad news is difficult Feelings of helplessnessSadness for the patientDesire to rescue the patient
7Cultural differencesNot all people from all cultures want to be told their diagnosisWhile 95% of patients in this country want to be informed of their medical situation, some do not.In many cultures, the family wants to be told the information, not the patient.
8Notes From The EdgeA true story about a 31 year old physician diagnosed with a tumor in his leg in 1992.Think about how this man and his family copes with the news of his illness and what he goes through over the course of treatment.
9Peter’s responseDesire for a clear understanding of the illness, prognosis & RX optionsA temporal orientation to the future and desire to maintain control into that futurePerception of freedom of choicesWillingness to discuss the prospect of death and dying openlyBelief in human agency over fatalism that minimizes the likelihood of divine interventionAn assumption that the individual rather than a social group or family is the primary decision maker.
10Core Western Values Autonomy vs. paternalism Independence vs. dependenceOpenness in discussion and truthIndividual decision-making over family aloneSurveys of cancer patients (especially younger ones) increasingly want to know their dx and be involved in Rx decisions
11The SPIKES Model: Delivering Bad News The SettingPerceptionInvitationKnowledgeEmpathizeSummary
12The Setting Create an appropriate setting that ensures: Privacy Patient comfortUninterrupted timeSitting at eye levelInvite significant others if appropriate
13Perception Find out what the patient’s perception is Ask the patient “what have you been told about what is going on?”, or, “What is your understanding about what is happening to you?”
14InvitationAsk if the patient would like you to disclose what is happeningAsk how specific you should be:“Are you the type of person who would like a lot of details, numbers etc.?”“Would you like me to share this with you or with a family member as well?”
15Knowledge Giving information Start at the patient’s level of understanding using appropriate languageGive information in small chunks and check to see whether the content is understood.Do not overwhelm with too much information
16Empathize Respond to the patient’s emotions and reactions Acknowledge all reactions and feelingsIdentify the emotion and validate and support
17Summary Summarize the meeting Ask if there are questions Give a clear plan for next steps
18The “Ask-Tell-Ask” Model Ask the patient what he/she wants to discussAsk the patient what he/she knows alreadyAsk the patient what he/she would like to know
19Tell Tell the patient what you would like to discuss, for example: “I suggest that we talk briefly about what is going on and talk about treatment options. You do not have to make a decision today. You may want to take some time to think about our discussion.”
20Recap the clinical situation Find out if the patient knows his/her diagnosisExplore the patient’s current understanding of the clinical situationJust so we are on the same page, tell me what you understand about what is going on.
21Outline medically reasonable treatment options Clearly provide the treatment options, checking for understandingOutline the pros and cons of eachAsk for the patient’s reactionReinforce accurate understanding“I agree that option 1 would be the roughest in terms of side effects..” or “yes, the oral chemo is easier to take but it does not shrink the cancer as often as the IV chemo”.
22When to give numerical information Ask, “are you the kind of person who likes to hear all the numbers?Be careful of framing effects, for example:Saying, “the treatment has a 30% chance of failure”, vs. “the treatment has a 70% chance of success…”Explain how the numbers pertain to your individual patient
23PrognosisOffer to talk about prognosis if the patient wants this information“Some patients want to know about prognosis, is this something you would like to talk about?“Well, we know that for patients who have this kind of cancer, they have the chemo, they live from months to a year, sometimes longer.If they choose not to have the chemo, they may live for a few weeks”
24Your views Ask patients if they want to hear your recommendations. If they say yes,“Based on what I’ve heard from you so far, the most important consideration for you is quality of life and you’re concerned about the side effects of the chemo, especially if it doesn’t work. But you also want to be present at your daughter’s graduation I 4 months. So I think for you it would be worth giving the iv chemo a try, knowing you could stop if the side effects are too much…”
25Negotiate a realistic time to make a decision Ask how much time the patient needs to make a decisionAsk what other family members or friends the patient may want to talk withAsk if any other information would be helpfulVerify the patient has a realistic time frame
26Types of Care at the End of Life Hospice CareHospice is not a “place”, it is a type of careMultidisciplinary carePrimarily provided in homes, some hospitals have hospice bedsSupport for people at the end of lifePalliative care: symptom & pain managementFocus on quality of life vs. prolongation of life
27Advanced Directives These should be ongoing discussions Know your patient’s preferencesHealth care proxyHow many of you have a living will?How many of you have a health care proxy?Living willDNRYou should have these discussions with patients way before you need them.Usually doctors do it at the last crucial moment.People change their minds
28Living WillThis outlines what you would like done to you and for you in the event you are not able to express your wishesIncludes identification of treatment wishes (DNR ; antibiotics; extraordinary measures; hydration; feeding)Includes identification of a health care proxy
29Health Care ProxyA person you identify to make decisions for you regarding your medical care in the even you are not able to express your own wishesYour “proxy” should be aware of what you would want in these instances
30Pitfalls Trying to cover too much in one visit Not responding to patient’s emotionsAssuming decision making can be accomplished in one visitGetting too technical and detailedForcing your view on your patient
31Your Role Reassure your patient you will not abandon them You will focus on what is important to themYou will involve them in decision-making as much as they would likeYou will be honest
32Grief, Loss, Mourning & Bereavement Grief is a normal processIt is the emotional and psychological reactions to a lossGrief begins before the death for patient and survivor) as one anticipates the loss (can start at diagnosis)Grief continues for the survivor and affects one physically, psychologically, socially and spiritually
33Grief No one “gets over” a loss One learns to live with the loss Grief is not always an orderly process or predictable
34Loss The absence of a possession or future possession. Losses are experienced in daily life: the break-up of a relationship; children moving out; loss of a jobLoss includes loss of function due to illness; loss of one’s role in a familyMost losses trigger mourning and grief
35MourningThe social expression of grief including rituals and practicesOften culturally and religiously determined: may be very emotional and verbal or show little reaction.Influenced by one’s personality, life’s experiences and previous losses
36Bereavement Includes grief and mourning The inner feelings and outward reactions of the survivorOften refers to the time it takes for the survivor to feel the pain of loss, mourn, grieve and adjust to a world without the presence of the deceased
37Bereavement Affects many systems in the body Decrease in immunity during bereavementChanges in the immune system produces increases in blood pressure; increased anxiety; and leads to increased risk of illness
38The Grieving Process There is a tremendous range of “normal” responses People take their own time to integrate devastating news: there is no one right way to grieve or mournReadjusting to life does not mean “forgetting”There is no such thing as “getting over it”
39What is Normal? Grief tends to be experienced in waves Over time the intensity and the frequency of the waves decreaseAbsence of intense distress early on does not mean pathology will ensue; may be a sign of resilience; may have a spiritual belief that one is in a “higher” placeMay feel distressed for longer than proscribed notion of 1 year. Usually the second year is more difficult – reality sets in.
40Tasks of GriefTo understand the person is dead. Full acceptance of the lossTo feel the feelings: experience the loss emotionally and cognitively. May feel shock, denial, guilt, anger, fear, sadness/sorrow and acceptanceTo reintegrate or reinvest in life and other relationships
41The Work of MourningMourning requires a lot of emotional energy, leaving less energy for normal activitiesSo much energy is tied to thinking about the lossOne can only reinvest in new energy after the old is discharged
42Anticipatory GriefTakes place before the death for the patient and survivorCan begin at time of diagnosisThe grief the patient undergoes to prepare him/herself for death.May provide time for preparation of loss, acceptance, finish unfinished businessPrepare for life without the loved one
43Anticipatory Grief Patients often ruminate about their past Review of one’s lifeWithdraw from family and friends as one prepares for final separationPeriods of sadness, crying and anxiety
44Sadness vs. Depression Involves lack of self-worth Loss of self-esteem Grief is experienced as sadnessSad, but able to smile about memories of the deceased, needs social interactionsMixture of good & bad daysMay feel guilt around specific issuesMay have thoughts of “joining the deceased, but not actively suicidalInvolves lack of self-worthLoss of self-esteemWorthlessnessHopelessnessOverwhelming generalized guiltSuicidal thoughtsFlat affect that persistsAnhedonia
45Both Grief and Depression Sleep disturbancesChanges in eatingCryingAngerAnxiety / fearSomatic features
46Depression in Bereavement Do not overlook depression in the bereavedIt often goes untreated because doctors see symptoms as normal & understandable in face of trauma.The patient may be deprived of appropriate treatment and suffer needlesslyMuch higher incidence of depression in widowedSymptoms can persist for several years
47Stages and Characteristics of Normal Grief Shock: protects the bereaved from experiencing loss too quickly and intenselyFeel numb / body shuts downFeel stunned (can happen at diagnosis)Much more profound if death is suddenSome people feel something is wrong with them if they don’t cry – at first it doesn’t sink in
48Normal Reactions in Grief (See handouts for details) Somatic symptomsEmotional ReactionsCognitive ReactionsBehavioral Reactions
49Some Somatic Symptoms of Grief Sighing respirationsLack of strengthExhaustion; lack of energyTightness in throatFood tastes like sand; dry mouthChest tightness: Abdominal emptinessInsomniaLoss of libidoTremors / shakesVulnerable to illnessFeeling dazed; sense of unrealityFeel lost; unorganized
51Cognitive Reactions Dreams of the deceased Disbelief state of depersonalizationConfusionInability to concentrateIdealization of the deceasedPreoccupation with thoughts or image of the deceasedDreams of the deceasedSense of presence of deceasedFleeting, tactile, olfactory, visual and auditory hallucinatory experiencesSearch for meaning
52Behavioral Reactions Impaired ability to work Crying Withdrawal Avoid reminders of deceasedSeeking or carrying reminders of deceasedOver-reactivityChanged relationships
53Phase INeed to tell story: compelling need to talk about the details (makes it “real”; rework trauma)Decreased ability to make decisions or impaired judgmentsIncreased risk of accidentsVulnerable to getting sickSurvivors guilt or may feel somehow responsibleAnger at deceased (for leaving); the doctor; self
54Phase II: Feeling the Feelings Can appear weeks to months after Loss Preoccupation with the deceasedSearching and yearning; intense wishingFully experience the sadness; crying; lonelyInsomnia / fatigueAnhedonia; anorexia; or overeatingPhysically enervatedShift in mood: anger at othersPeople feel more “depressed” as reality sets inIncreased anxiety as in PTSD
55The FeelingsHallucinations: visual, auditory and olfactory (confined to the deceased); talking to the deceasedThe wish to see the person is so strongDoes not mean “crazy”Visualize the deceased in their favorite chair, on the street, hear their car…More reported by women; experienced as pleasurablePhysician: normalize these events for the bereaved
56Reorganization: Phase III Adaptation; renewed interests (comes and goes)May be end of first, second, third year…Ability to recall past with pleasureNew social contactsSense of release and renewed energy without guiltAbility to make better judgmentsReturn to more stable eating; sleepingCrying spells less frequent
57Complicated Grief: Danger Signs Persistent thoughts of self-destructionHighest rate suicide: elderly widowed menFailure to provide for basic needs: food; fluids; regular range of motion exerciseLook for malnutrition in the widowed elderlyPersistent feelings of depression –hopelessness, worthlessnessAbuse of alcohol or drugsThese are rarely used for the first time after a lossRecurrence of mental illness
58MedicationsMust carefully assess degree of depression and need for medicationDo not overly medicate after a lossPeople want to feel the full impact of the lossDo not overly medicate for a funeral – survivors want to remember the eventStudies show use of benzodiazepines during bereavement in short term decrease anxiety and crying, but may inhibit normal process
59Types of Complicated Grief Delayed: avoidance of reality; grief reactions postponedChronic: normal reactions persist over long timeExaggerated: self-destructive behaviors; over-reactivityMasked: unaware that behaviors that interfere with fx are result of lossDisenfranchised: When a loss is experienced and cannot be openly acknowledged or publicly sharedHIV/AIDS; ex-partners or ex-spouse; friends; lovers; mistresses; mother of a stillbornEmployers don’t recognize the loss
60Complications Alteration in relationships with friends Furious hostility: bitterness; feeling victimizedDevelopment of somatic symptoms of deceasedSelf-punitive behavior/ agitated depressionFeel deserved to suffer or be punishedObsessive thinking: what did I do to deserve this?Workaholic behavior
61Factors that Influence Grief Reactions Timing of death in life cycle: child vs. elderlyNature of death: sudden; suicide; prolonged illness; homicide; trauma; natural disaster; warEarlier unresolved lossesPre-morbid functioning: depression; substance abuseRelationship with deceased: the better the relationship – less conflict in mourningSupport systemSpiritual solace
62Characteristics After Sudden Death Prominent depressive symptomsPreservation of the deceasedSuicidal ideationAnger at deceased
63Gender Differences in Mourning Women Men More intense reactionsNeed to talk about the loss, express feelings and be recognized by others;Want emotional comfortRely on others for helpDifficulty with angerOften are angry at men because believe they are being insensitive, when grieving in their own wayDo not tend to talk about the feelings as muchDesire for faster return to normalcyFocus more on practicalities; desire to fix the problemDive into work routineFocus on “managing and controlling” loneliness vs. expressing sadness
64Gender TensionsSex role conditioning may impede healing, particularly for menMen often reject support groupsDo not try to make men grieve like womenGive permission to cry, express, not rush to fixExample: A couple’s child dies. The woman tells her husband how sad, lonely and empty she feels. Her husband responds by suggesting she get a part time job to keep her mind off “things”. She gets furious at him. She tells him he doesn’t “get it”, he is insensitive and all she wanted to do was tell him how she feels and wondered if he feels that way too. She wanted acknowledement.He wanted to problem solve, fix the problem and protect her.Result – they are both angry at each other because neither one understood the other’s intentions and wishes in this communication.
65Role of the Physician: Prior to Death Tell patient and family of impending deathUse factual and direct languageLet people know what to expectRespect family rituals of mourningFacilitate open discussion of advanced directivesEncourage life reviewEncourage family to complete unfinished business; say goodbyes
66Role of MD: After the Death Inform bereaved what to expectGive permission to grieveNormalize grief reactions and individual differencesMonitor reactions and medical statusAcknowledge one’s own feelings of loss, failure, attachmentRequest autopsy; organ donationRespect mourning rituals; cultural differencesOffer appropriate resources
67After the Death Advised the recently bereaved: Do not make major life decisions too fastMake sure to drink fluidsWarn of higher risk for accidents (e.g. driving)Warn of higher risk for getting sickNormalize hallucinations of deceased or other reactions that may worry the bereavedDo not put a time limit on grievingOffer support and empathyWarn bereaved of anniversary reactions
68Therapeutic Interventions with the Bereaved Ask the patient to tell their story:Describe circumstances of deathHow did they learn of the deathWhat was the funeral likeAsk the patient to describe the deceasedElicit the patient’s last words with deceasedAsk the pt what would he/she like to tell the deceased now if were still aliveAsk about memories they would like to share
69ResourcesBuckman, R. (1992) How to Break Bad News: A Guide for Health Care Professionals. Johns Hopkins University Press: Baltimore.Rando, TA. (1991) How to Go on Living When Someone You Love Dies. Bantam Books, New York.Callanan, M., Kelley P. (1997) Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying. Bantam Books, New York.