End of Life Issues: Death and Dying / Grief and Loss Sally Schwab, Ph.D., C.S.W. Clinical Assistant Professor of Medicine Why is This Topic Important? 60% of people in this country die in a hospital 5-10% of the population lose a relative each year Death/loss is a major cause of adverse health effects: the widowed have higher death rates compared to married couples Death is a taboo subject There are many misperceptions re: dying and mourning Physicians are not taught how to talk about end of life issues Objectives: By the end of today, you will be able to: Define the protocol for delivering bad news Demonstrate helpful ways to communicate with patients who are dying Define the terms mourning, grief and bereavement Identify the tasks of mourning Describe the different ways people mourn Recognize normal and abnormal aspects of mourning Describe the role of the physician re: dying patients and their families The Role of the Physician Getting to know your patient Diagnosis / prognosis Delivery of news Collaborating with your patient Understanding your patient’s wishes and values Management of communication of information Management of disease, treatment, pain, death Discussion of advanced directives Definition of Bad News Any news that adversely and seriously affects an individual’s view of his or her future. Bad news is not only about cancer or death Breaking Bad News Breaking bad news is difficult Feelings of helplessness Sadness for the patient Desire to rescue the patient Cultural differences Not all people from all cultures want to be told their diagnosis While 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. Notes From The Edge A 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. Peter’s response Desire for a clear understanding of the illness, prognosis & RX options A temporal orientation to the future and desire to maintain control into that future Perception of freedom of choices Willingness to discuss the prospect of death and dying openly Belief in human agency over fatalism that minimizes the likelihood of divine intervention An assumption that the individual rather than a social group or family is the primary decision maker. Core Western Values Autonomy vs. paternalism Independence vs. dependence Openness in discussion and truth Individual decision-making over family alone Surveys of cancer patients (especially younger ones) increasingly want to know their dx and be involved in Rx decisions The SPIKES Model: Delivering Bad News The Setting Perception Invitation Knowledge Empathize Summary The Setting Create an appropriate setting that ensures: Privacy Patient comfort Uninterrupted time Sitting at eye level Invite significant others if appropriate Perception 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?” Invitation Ask if the patient would like you to disclose what is happening Ask 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?” Knowledge Giving information Start at the patient’s level of understanding using appropriate language Give information in small chunks and check to see whether the content is understood. Do not overwhelm with too much information Empathize Respond to the patient’s emotions and reactions Acknowledge all reactions and feelings Identify the emotion and validate and support Summary Summarize the meeting Ask if there are questions Give a clear plan for next steps The “Ask-Tell-Ask” Model Ask the patient what he/she wants to discuss Ask the patient what he/she knows already Ask the patient what he/she would like to know Tell 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.” Recap the clinical situation Find out if the patient knows his/her diagnosis Explore the patient’s current understanding of the clinical situation Just so we are on the same page, tell me what you understand about what is going on. Outline medically reasonable treatment options Clearly provide the treatment options, checking for understanding Outline the pros and cons of each Ask for the patient’s reaction Reinforce 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”. When 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 Prognosis Offer 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” Your 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…” Negotiate a realistic time to make a decision Ask how much time the patient needs to make a decision Ask what other family members or friends the patient may want to talk with Ask if any other information would be helpful Verify the patient has a realistic time frame Types of Care at the End of Life Hospice Care Hospice is not a “place”, it is a type of care Multidisciplinary care Primarily provided in homes, some hospitals have hospice beds Support for people at the end of life Palliative care: symptom & pain management Focus on quality of life vs. prolongation of life Advanced Directives These should be ongoing discussions Know your patient’s preferences Health care proxy How many of you have a living will? How many of you have a health care proxy? Living will DNR Living Will This outlines what you would like done to you and for you in the event you are not able to express your wishes Includes identification of treatment wishes (DNR ; antibiotics; extraordinary measures; hydration; feeding) Includes identification of a health care proxy Health Care Proxy A person you identify to make decisions for you regarding your medical care in the even you are not able to express your own wishes Your “proxy” should be aware of what you would want in these instances Pitfalls Trying to cover too much in one visit Not responding to patient’s emotions Assuming decision making can be accomplished in one visit Getting too technical and detailed Forcing your view on your patient Your Role Reassure your patient you will not abandon them You will focus on what is important to them You will involve them in decisionmaking as much as they would like You will be honest Grief, Loss, Mourning & Bereavement Grief is a normal process It is the emotional and psychological reactions to a loss Grief 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 Grief No one “gets over” a loss One learns to live with the loss Grief is not always an orderly process or predictable Loss 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 job Loss includes loss of function due to illness; loss of one’s role in a family Most losses trigger mourning and grief Mourning The social expression of grief including rituals and practices Often 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 Bereavement Includes grief and mourning The inner feelings and outward reactions of the survivor Often 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 Bereavement Affects many systems in the body Decrease in immunity during bereavement Changes in the immune system produces increases in blood pressure; increased anxiety; and leads to increased risk of illness The 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 mourn Readjusting to life does not mean “forgetting” There is no such thing as “getting over it” What is Normal? Grief tends to be experienced in waves Over time the intensity and the frequency of the waves decrease Absence 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” place May feel distressed for longer than proscribed notion of 1 year. Usually the second year is more difficult – reality sets in. Tasks of Grief To understand the person is dead. Full acceptance of the loss To feel the feelings: experience the loss emotionally and cognitively. May feel shock, denial, guilt, anger, fear, sadness/sorrow and acceptance To reintegrate or reinvest in life and other relationships The Work of Mourning Mourning requires a lot of emotional energy, leaving less energy for normal activities So much energy is tied to thinking about the loss One can only reinvest in new energy after the old is discharged Anticipatory Grief Takes place before the death for the patient and survivor Can begin at time of diagnosis The grief the patient undergoes to prepare him/herself for death. May provide time for preparation of loss, acceptance, finish unfinished business Prepare for life without the loved one Anticipatory Grief Patients often ruminate about their past Review of one’s life Withdraw from family and friends as one prepares for final separation Periods of sadness, crying and anxiety Sadness vs. Grief is experienced as sadness Sad, but able to smile about memories of the deceased, needs social interactions Mixture of good & bad days May feel guilt around specific issues May have thoughts of “joining the deceased, but not actively suicidal Depression Involves lack of selfworth Loss of self-esteem Worthlessness Hopelessness Overwhelming generalized guilt Suicidal thoughts Flat affect that persists Anhedonia Both Grief and Depression Sleep disturbances Changes in eating Crying Anger Anxiety / fear Somatic features Depression in Bereavement Do not overlook depression in the bereaved It often goes untreated because doctors see symptoms as normal & understandable in face of trauma. The patient may be deprived of appropriate treatment and suffer needlessly Much higher incidence of depression in widowed Symptoms can persist for several years Stages and Characteristics of Normal Grief Shock: protects the bereaved from experiencing loss too quickly and intensely Feel numb / body shuts down Feel stunned (can happen at diagnosis) Much more profound if death is sudden Some people feel something is wrong with them if they don’t cry – at first it doesn’t sink in Normal Reactions in Grief (See handouts for details) Somatic symptoms Emotional Reactions Cognitive Reactions Behavioral Reactions Some Somatic Symptoms of Grief Sighing respirations Lack of strength Exhaustion; lack of energy Tightness in throat Food tastes like sand; dry mouth Chest tightness: Abdominal emptiness Insomnia Loss of libido Tremors / shakes Vulnerable to illness Feeling dazed; sense of unreality Feel lost; unorganized Emotional Reactions Relief Emancipation Sadness Yearning Anxiety Loneliness; emptiness Despair Ambivalence Unable to feel pleasure Fear; anger Shame Cognitive Reactions Disbelief state of depersonalization Confusion Inability to concentrate Idealization of the deceased Preoccupation with thoughts or image of the deceased Dreams of the deceased Sense of presence of deceased Fleeting, tactile, olfactory, visual and auditory hallucinatory experiences Search for meaning Behavioral Reactions Impaired ability to work Crying Withdrawal Avoid reminders of deceased Seeking or carrying reminders of deceased Over-reactivity Changed relationships Phase I Need to tell story: compelling need to talk about the details (makes it “real”; rework trauma) Decreased ability to make decisions or impaired judgments Increased risk of accidents Vulnerable to getting sick Survivors guilt or may feel somehow responsible Anger at deceased (for leaving); the doctor; self Phase II: Feeling the Feelings Can appear weeks to months after Loss Preoccupation with the deceased Searching and yearning; intense wishing Fully experience the sadness; crying; lonely Insomnia / fatigue Anhedonia; anorexia; or overeating Physically enervated Shift in mood: anger at others People feel more “depressed” as reality sets in Increased anxiety as in PTSD The Feelings Hallucinations: visual, auditory and olfactory (confined to the deceased); talking to the deceased The wish to see the person is so strong Does not mean “crazy” Visualize the deceased in their favorite chair, on the street, hear their car… More reported by women; experienced as pleasurable Physician: normalize these events for the bereaved Reorganization: Phase III Adaptation; renewed interests (comes and goes) May be end of first, second, third year… Ability to recall past with pleasure New social contacts Sense of release and renewed energy without guilt Ability to make better judgments Return to more stable eating; sleeping Crying spells less frequent Complicated Grief: Danger Signs Persistent thoughts of self-destruction Highest rate suicide: elderly widowed men Failure to provide for basic needs: food; fluids; regular range of motion exercise Look for malnutrition in the widowed elderly Persistent feelings of depression – hopelessness, worthlessness Abuse of alcohol or drugs These are rarely used for the first time after a loss Recurrence of mental illness Medications Must carefully assess degree of depression and need for medication Do not overly medicate after a loss People want to feel the full impact of the loss Do not overly medicate for a funeral – survivors want to remember the event Studies show use of benzodiazepines during bereavement in short term decrease anxiety and crying, but may inhibit normal process Types of Complicated Grief Delayed: avoidance of reality; grief reactions postponed Chronic: normal reactions persist over long time Exaggerated: self-destructive behaviors; overreactivity Masked: unaware that behaviors that interfere with fx are result of loss Disenfranchised: When a loss is experienced and cannot be openly acknowledged or publicly shared HIV/AIDS; ex-partners or ex-spouse; friends; lovers; mistresses; mother of a stillborn Employers don’t recognize the loss Complications Alteration in relationships with friends Furious hostility: bitterness; feeling victimized Development of somatic symptoms of deceased Self-punitive behavior/ agitated depression Feel deserved to suffer or be punished Obsessive thinking: what did I do to deserve this? Workaholic behavior Factors that Influence Grief Reactions Timing of death in life cycle: child vs. elderly Nature of death: sudden; suicide; prolonged illness; homicide; trauma; natural disaster; war Earlier unresolved losses Pre-morbid functioning: depression; substance abuse Relationship with deceased: the better the relationship – less conflict in mourning Support system Spiritual solace Characteristics After Sudden Death Prominent depressive symptoms Preservation of the deceased Suicidal ideation Anger at deceased Gender Differences in Mourning Women Men More intense reactions Need to talk about the loss, express feelings and be recognized by others; Want emotional comfort Rely on others for help Difficulty with anger Often are angry at men because believe they are being insensitive, when grieving in their own way Do not tend to talk about the feelings as much Desire for faster return to normalcy Focus more on practicalities; desire to fix the problem Dive into work routine Focus on “managing and controlling” loneliness vs. expressing sadness Gender Tensions Sex role conditioning may impede healing, particularly for men Men often reject support groups Do not try to make men grieve like women Give permission to cry, express, not rush to fix Role of the Physician: Prior to Death Tell patient and family of impending death Use factual and direct language Let people know what to expect Respect family rituals of mourning Facilitate open discussion of advanced directives Encourage life review Encourage family to complete unfinished business; say goodbyes Role of MD: After the Death Inform bereaved what to expect Give permission to grieve Normalize grief reactions and individual differences Monitor reactions and medical status Acknowledge one’s own feelings of loss, failure, attachment Request autopsy; organ donation Respect mourning rituals; cultural differences Offer appropriate resources After the Death Advised the recently bereaved: Do not make major life decisions too fast Make sure to drink fluids Warn of higher risk for accidents (e.g. driving) Warn of higher risk for getting sick Normalize hallucinations of deceased or other reactions that may worry the bereaved Do not put a time limit on grieving Offer support and empathy Warn bereaved of anniversary reactions Therapeutic Interventions with the Bereaved Ask the patient to tell their story: Describe circumstances of death How did they learn of the death What was the funeral like Ask the patient to describe the deceased Elicit the patient’s last words with deceased Ask the pt what would he/she like to tell the deceased now if were still alive Ask about memories they would like to share Resources Buckman, 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.