End of Life Issues: Death and Dying / Grief and Loss

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End of Life Issues Death and Dying /Grief and
Loss

• Sally Schwab, Ph.D., C.S.W.
• Clinical Assistant Professor of Medicine

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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

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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

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The Role of the Physician

• Getting to know your patient
• Diagnosis / prognosis
• Delivery of news
• Collaborating with your patient
• Understanding your patients wishes and values
• Management of communication of information
• Management of disease, treatment, pain, death
• Discussion of advanced directives

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Definition of Bad News

• Any news that adversely and seriously affects an
  individuals view of his or her future.
• Bad news is not only about cancer or death

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Breaking Bad News

• Breaking bad news is difficult
• Feelings of helplessness
• Sadness for the patient
• Desire to rescue the patient

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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.

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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.

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Peters 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.

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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

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The SPIKES Model Delivering Bad News

• The Setting
• Perception
• Invitation
• Knowledge
• Empathize
• Summary

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The Setting

• Create an appropriate setting that ensures
• Privacy
• Patient comfort
• Uninterrupted time
• Sitting at eye level
• Invite significant others if appropriate

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Perception

• Find out what the patients 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?

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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?

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Knowledge

• Giving information
• Start at the patients 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

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Empathize

• Respond to the patients emotions and reactions
• Acknowledge all reactions and feelings
• Identify the emotion and validate and support

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Summary

• Summarize the meeting
• Ask if there are questions
• Give a clear plan for next steps

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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

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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.

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Recap the clinical situation

• Find out if the patient knows his/her diagnosis
• Explore the patients current understanding of
  the clinical situation
• Just so we are on the same page, tell me what you
  understand about what is going on.

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Outline medically reasonable treatment options

• Clearly provide the treatment options, checking
  for understanding
• Outline the pros and cons of each
• Ask for the patients 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.

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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

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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

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Your views

• Ask patients if they want to hear your
  recommendations.
• If they say yes,
• Based on what Ive heard from you so far, the
  most important consideration for you is quality
  of life and youre concerned about the side
  effects of the chemo, especially if it doesnt
  work. But you also want to be present at your
  daughters 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

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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

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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

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Advanced Directives

• These should be ongoing discussions
• Know your patients preferences
• Health care proxy
• How many of you have a living will?
• How many of you have a health care proxy?
• Living will
• DNR

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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

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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

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Pitfalls

• Trying to cover too much in one visit
• Not responding to patients emotions
• Assuming decision making can be accomplished in
  one visit
• Getting too technical and detailed
• Forcing your view on your patient

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Your Role

• Reassure your patient you will not abandon them
• You will focus on what is important to them
• You will involve them in decision-making as much
  as they would like
• You will be honest

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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

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Grief

• No one gets over a loss
• One learns to live with the loss
• Grief is not always an orderly process or
  predictable

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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 ones role in a family
• Most losses trigger mourning and grief

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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 ones personality, lifes
  experiences and previous losses

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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

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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

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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

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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.

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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

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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

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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

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Anticipatory Grief

• Patients often ruminate about their past
• Review of ones life
• Withdraw from family and friends as one prepares
  for final separation
• Periods of sadness, crying and anxiety

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Sadness vs. Depression

• 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

• Involves lack of self-worth
• Loss of self-esteem
• Worthlessness
• Hopelessness
• Overwhelming generalized guilt
• Suicidal thoughts
• Flat affect that persists
• Anhedonia

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Both Grief and Depression

• Sleep disturbances
• Changes in eating
• Crying
• Anger
• Anxiety / fear
• Somatic features

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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

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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 dont cry at first it doesnt sink in

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Normal Reactions in Grief(See handouts for
details)

• Somatic symptoms
• Emotional Reactions
• Cognitive Reactions
• Behavioral Reactions

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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

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Emotional Reactions

• Relief
• Emancipation
• Sadness
• Yearning
• Anxiety

• Loneliness emptiness
• Despair
• Ambivalence
• Unable to feel pleasure
• Fear anger
• Shame

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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

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Behavioral Reactions

• Impaired ability to work
• Crying
• Withdrawal
• Avoid reminders of deceased
• Seeking or carrying reminders of deceased
• Over-reactivity
• Changed relationships

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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

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Phase II Feeling the FeelingsCan 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

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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

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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

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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

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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

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Types of Complicated Grief

• Delayed avoidance of reality grief reactions
  postponed
• Chronic normal reactions persist over long time
• Exaggerated self-destructive behaviors
  over-reactivity
• 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 dont recognize the loss

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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

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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

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Characteristics After Sudden Death

• Prominent depressive symptoms
• Preservation of the deceased
• Suicidal ideation
• Anger at deceased

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Gender Differences in MourningWomen
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

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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

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Role of the PhysicianPrior 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

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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 ones own feelings of loss, failure,
  attachment
• Request autopsy organ donation
• Respect mourning rituals cultural differences
• Offer appropriate resources

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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

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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 patients 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

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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.