DEATH, DYING AND GRIEF Medical psychology seminar Tamás Dömötör SZALAI Semmelweis University, Institute of Behavioural Sciences [email protected] www.behsci.sote.hu SEMANTIC DIFFERENCES Please write down the first 3 words which turn into your mind when you hear: Death Pain Cancer Incurable These connotations will be a substantial part of your attitude and communication. WARM-UP What dou you think, what is death? How would you immagine it? Why is it so scaring? What quality of death makes us frightened? DEFINITION OF DEATH Is it still unclear? Pulmonary Cardiac Neurological Neocortical definition – brain death CRITERIA FOR ESTABLISHING DEATH 1. 2. 3. 4. 5. 6. Unreceptivity and unresponsiveness even to intensely painful stimuli No movement or spontaneous respiration for 3 minutes after being removed from respirator Complete absence of reflexes, both deep tendon and central A flat electroencephalogram (EEG) for at least 10 minutes of technically adequate recording, without response to noise or painful stimuli All of above tests repeated in 24 hours with no change No history of hypothermia or use of central nervous system depressants before onset of coma WHAT INFLUENCES DEATH? 1. Aging Life expectancy was appr.49 years in the 20th century <-> today around 65-85 years) 2. Chronic diseases 3. Pain and suffering 4. Deficinences of angalgesics 5. Lack of personal decisions 6. Social isolation of death and diseases Location of death in 1900 was at home in 80% <-> now more than 80% in institutional settings) CAUSES OF DEATH in 1900: in 1998: Influenza disease (31%) Pneumonia Tuberculosis Gastroenteritis (all above: 31.4%) Cardiovascular (14.2%) Cardiovascular Cancer (23%) Stroke (7%) CAUSES OF DEATH Today: THE RIGHTS OF SEVERELY ILL PATIENTS (1997. LOW OF HEALTH CARE IN HUNGARY) 1. Right for health care 2. Right for human dignity 3. Right for analgesics 4. Right to for human contact 5. Right for patient information 6. Right for autonomy and decisions about themselves 7. Right to reject life-sustaining treatment (not euthanasia) DYING Thoughts and fears about death: Impersonal, death of a stranger Interpersonal, someone who matters Intrapersonal, death anxiety is significantly higher in those who choose a career in medicine VIDEO - Kübler Ross: Understanding dying FEELINGS EXERCISE 4 groups Each group has to gather all the feelings connected to one of the following: a) doctors experience when they discover a patient of theirs is beyond help b) the patient experiences while dying c) family members experience when a beloved one is dying d) people experience while going through grief Discussion SIGNS OF THE PREACTIVE PHASE OF DYING: increased restlessness, confusion, agitation, inability to stay content in one position and insisting on changing positions frequently (exhausting family and caregivers) withdrawal from active participation in social activities increased periods of sleep, lethargy decreased intake of food and liquids beginning to show periods of pausing in the breathing (apnea) whether awake or sleeping patient reports seeing persons who had already died patient states that he or she is dying patient requests family visit to settle "unfinished business" and tie up "loose ends" inability to heal or recover from wounds or infections increased swelling (edema) of either the extremities or the entire body CASE STUDY A dying patient and a 4th year medical student Read the case study and make a common discussion about the failures. What should be done? Answer the questions. WHAT ARE PATIENTS THE MOST AFRAID OF? (HEGEDŰS, K.) Gynaecologycal ocology (N=52) How the family will accept their state (11) New surgery, pain, bleeding (7) Getting worse (4) Death (4) What is going to happen as they arrive home (3) Future (3) Defencelessness (2) Healing or not (2) Metastasis (1) Causes of fear in people with life threatening illness • Fear of separation from loved people, homes, jobs etc. • Fear of becoming a burden to others • Fear of losing control • Fear from dependentce • Fear of pain or other worsening symptoms • Fear of being unable to complete life tasks or responsibilities • Fear of dying • Fear of being dead • Fear of the fears of others (reflected fear) Losses of patients with life threatening illness • Loss of security • Loss of physical functions • Loss of body image • Loss of power or strength • Loss independence • Loss of self esteem • Loss of the respect of others • Loss of future CONDITIONS OF A „GOOD DEATH” (BLOCK, 2001) Optimalization od physical comfort, minimalizing pain and physical discomfort (it does not cease the interpersonal and psychological crisis) Maintanence and strengthening relationships (what shall be talked over) Finding a meaning in personal life and death Maintaing sense of personal continuity (if its any possible) Maintaing the sense of control Facing death and preparation PRACTICE – ACTION PLAN Work in 3 groups Make an action plan for a case of noticing certain fatal diangosis or terminal stage What professionals, members (even family) would you involve? Which concrete steps would you make? How would you try to give opportunity for a better death? SIGNS OF THE ACTIVE PHASE OF DYING inability to arouse patient at all (coma) or, ability to only arouse patient with great effort but patient quickly returns to severely unresponsive state (semi-coma) severe agitation in patient, hallucinations, acting "crazy" and not in patient's normal manner or personality much longer periods of pausing in the breathing (apnea) dramatic changes in the breathing pattern including apnea, but also including very rapid breathing or cyclic changes in the patterns of breathing (such as slow progressing to very fast and then slow again, or shallow progressing to very deep breathing while also changing rate of breathing to very fast and then slow) other very abnormal breathing patterns severely increased respiratory congestion or fluid buildup in lungs inability to swallow any fluids at all (not taking any food by mouth voluntarily as well) patient states that he or she is going to die SIGNS OF THE ACTIVE PHASE OF DYING patient breathing through wide open mouth continuously and no longer can speak even if awake urinary or bowel incontinence in a patient who was not incontinent before marked decrease in urine output and darkening color of urine or very abnormal colors (such as red or brown) blood pressure dropping dramatically from patient's normal blood pressure range (more than a 20 or 30 point drop) systolic blood pressure below 70, diastolic blood pressure below 50 patient's extremities (such as hands, arms, feet and legs) feel very cold to touch patient complains that his or her legs/feet are numb and cannot be felt at all cyanosis, or a bluish or purple coloring to the patients arms and legs, especially the feet and hands) patient's body is held in rigid unchanging position jaw drop; the patient's jaw is no longer held straight and may drop to the side their head is lying towards KÜBLER – ROSS: STAGES OF DYING (1969) VIDEO THE STAGES DYING 1. Denial — One of the first reactions is Denial, wherein the survivor imagines a false, preferable reality. 2. Anger — When the individual recognizes that denial cannot continue, it becomes frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?"; "Why would God let this happen?". 3. Bargaining — The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Other times, they will use anything valuable against another human agency to extend or prolong the life. People facing less serious trauma can bargain or seek compromise. 4. Depression — "I'm so sad, why bother with anything?"; "I'm going to die soon so what's the point?"; "I miss my loved one, why go on? The individual becomes saddened by the certainty of death. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen. 5. Acceptance — "It's going to be okay."; "I can't fight it, I may as well prepare for it.„ Individuals embrace mortality or inevitable future, or that of a loved one, or other tragic event. People dying may precede the survivors in this state, which typically comes with a calm, retrospective view for the individual, and a stable condition of emotions. VIDEO – KÜBLER-ROSS IS SPEAKING TO A DYING PATIENT How would you desribe the patient’s state? What could she expereince? How did she approach to the patient? What shall we learn from her? Always remember that your loved one can often hear you even up till the very end, even though he or she cannot respond by speaking. Your loving presence at the bedside can be a great expression of your love for your loved one and help him to feel calmer and more at peace at the time of death GRIEVING A LOST AMOROUS RELATIONSHIP Denial: The person left behind is unable to admit that the relationship is over. He/she may continue to seek the former partner's attention. Anger: The partner left behind may blame the departing partner, or him/herself. Bargaining: The partner left behind may plead with a departing partner that the stimulus that provoked the breakup shall not be repeated. Example: "I can change. Please give me a chance." Alternatively, he/she may attempt to renegotiate the terms of the relationship. Depression: The partner left behind might feel discouraged that his or her bargaining plea did not convince the former partner to stay. Acceptance: Lastly, the partner abandons all efforts toward renewal of the relationship. CHILDREN’S CONCEPT OF DEATH 2-5-years: „animismus”: Dead people can move, think, talk, and even come back, when they’re gone -> death is reversible. They wit for the dead one to come back. This expectation is even stronger, when they are not informed properly. 5-9-years: „personification”: Death is a person that takes people away, but miracles can help. Death is reversible. Fear from death depends from the child’s fantasies, family stories, films and how they imagine death CHILDREN’S CONCEPT OF DEATH From 9 years on: More realistic, irreversible picture about death Gref is similar to adults, but depends on family traditions Trying to help the mourning parent to rebuild security and the balance of the attachment figure They can stick into this supprting role Physical and psychological symptoms can show the lingered grief GRIEF & MOURNING MOURNING Psychological process that leads to eventual resolution of bereavement – restore ability to enjoy life after any serious loss. Grief Protest Despair Detachment GRIEF AND MOURNING Normal: Somatic Distress Preoccupation with deceased Guilt Hostility Loss of conduct Within 4-6 weeks http://www3.mdanderson.org/str eams/FullVideoPlayer.cfm?xml= proEd%2Fconfig%2FFatherHas Died_cfg THE 6 PHASES MODEL OF GRIEF AND MOURNING 1. Anticipiation Anticipating the loss before the actual death – soetimes it helps to tolerate the death, sometimes the underlying emotiens prevent it. 2. Shock Strong reaction for the death, sometimes denial Some minutes – 1-2 days (unexpected death) 3. Controlled phase Management of everydays after death, funeral etc. Depersonalization -> the funeral increases the awareness, and gives possibility for peel off from the lost one A 3 PHASES MODEL 1. Protest: Spontaneous reactions of disbelief focused on the deceased 2. Despair: Intuitive realization that deceased person is indeed lost 3. Detachment: Emotions that previously focused on deceased reoriented toward other people and activities THE PHASES OF GRIEF AND MOURNING 4. Awareness Emotions are strong, sense of presence of the deceased person Thinking: as a part of the self would be dead. Negeativismus, sometimes magical thinking Behaviour: inability for decisions, ambivlence, seeken and avoiding Relationships: withdrawal Bodily symptoms THE PHASES OF GRIEF AND MOURNING 5. „Working period” Conscious thinking Rational acception Good memories beside the painful ones Anniversaries, feasts, holidays can be hard 6. Adaptation New balance, the person is able to normal life The lost one and the memories are parts of the self Self-integration, lack of guilt New social contacts, future plans MOURNING IS DETERMNED BY GRIEF AND MOUNING IS DETERMINED BY Relationship with the lost one (intensity, ambivalence, anger etc.) Way of death Age Gender Personality of the mourner Previous losses Previous illnesses (eg. depression) Actual psychic status Culture and religious believes Social contacts HOW WOULD / COULD YOU HELP THE MOURNES AS A DOCTOR? PATHOLOGICAL GRIEF Types: Timing Intensity Chronic grief (more than 1 year) Delayed greif bagatellisation Hypertrofic (too strong) The absence of grief (rituals!!) From and symptoms Dystorted grief Dysfunctional denial Manic escape („merry widow”) Dysfunctional hostility Clinical depression The doctor’s grief • It is a sign of maturity to know when to ask for help • A wise doctor will have worked-out systems of support to meet a range of needs. SUMMARY We should never assume that we know what people with terminal illness fear from Most patients will benefit if we make it secure enough for them to share their fears Fear can aggravate pain, and pain fear Patients with life threatening illnesses experience a series of losses as the illness progresses Grief is natural and needs to be acknowledged and expressed THE „PALM EXERCISE” Draw the outline of your palm In each finger write down one thing that characterizes you Mark those characteristics with a plus that you think will help dealing with dying patients In the middle of the palm write all those things that you need to acquire or further develop in order to deal with death and dying In the wrist area write all those things and persons that you think may help you in it Discussion in small groups. COMMUNICATING ABOUT DEATH AND ITS POSSIBILITY 3 COMMUNICATION MODELS OF BAD NEWS 1. Non-disclosure model „Patients don’t want to hear + they must be protected” 2. Full disclosure model „Eveyone wants to know about their health + patients have the right to know” (but not the obligation!) 3. Individualised disclosure model Differences in the need of information to cope with Information must be shared gradually, adjusted to the nature of bad news THE S.P.I.K.E.S MODEL 1. Setting up: prepare for the meeting – information, time, material 2. Patient’s perception: What does the patient know? What state is he/she in? Ask to sit down, opening question: „How are you? Have you talked with the previous doctor?” 3. Invitation to break news: Find out patient’s need of information: „Some want to know everything, others want only outlines. What would you prefer?” 4. Knowledge: Deliver facts of information: comprehensibility brief and stay at the point – disclose it gradually - two-way communication - inviting questions - avoid semantic confusion 5. Emotions: react to emotions – emphatic questions and feedback, properly handling crying, discuss possible treatment or support 6. Summary and strategy: summarize details, warn about the probalbe emotional reactions, discuss future actions OTHER TASKS, PRINCIPLES Doctors must record: who was present, what was said + rections, support mentioned + necessary actions Other treatment members must be informed about the conversation! Circumstances of the question Clarify the background of the question (Are you asking, because..?) Refer to the previous conversations Honesty Admit areas of uncerainty Offer hope VIDEO - TELLING BAD NEWS – DONE WELL SCRIPT PRACTICE – THE SPIKES MODEL COMMUNICATING BAD NEWS 1. 2. 3. 4. 5. 6. Setting - prepare Perception – what they know Invitation – need of informations Knowledge – facts of information Explore emotions and empathise Strategy and summary Thank you for your kind attention!
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