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


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 ... – PowerPoint PPT presentation

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

End of Life Issues Death and Dying /Grief and
  • 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
  • Physicians are not taught how to talk about end
    of life issues

Objectives By the end of today, you will be able
  • 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 patients 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
    individuals 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.

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

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

  • 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?

  • 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?

  • 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

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

  • 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 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 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.

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.

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
  • Explain how the numbers pertain to your
    individual patient

  • 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
  • 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

Negotiate a realistic time to make a decision
  • Ask how much time the patient needs to make a
  • 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 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

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
  • 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

  • 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

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

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

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

  • 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

  • The social expression of grief including rituals
    and practices
  • Often culturally and religiously determined may
    be very emotional and verbal or show little
  • Influenced by ones personality, lifes
    experiences and previous losses

  • Includes grief and mourning
  • The inner feelings and outward reactions of the
  • 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

  • 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
  • To reintegrate or reinvest in life and other

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
  • 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 ones life
  • Withdraw from family and friends as one prepares
    for final separation
  • Periods of sadness, crying and anxiety

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

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
  • 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 dont cry at first it doesnt sink in

Normal Reactions in Grief(See handouts for
  • 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
  • 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
  • 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 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

The Feelings
  • Hallucinations visual, auditory and olfactory
    (confined to the deceased) talking to the
  • 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
  • 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,
  • Abuse of alcohol or drugs
  • These are rarely used for the first time after a
  • Recurrence of mental illness

  • 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
  • Chronic normal reactions persist over long time
  • Exaggerated self-destructive behaviors
  • 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

  • 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
  • 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
  • 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 MourningWomen
  • 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
  • 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 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

Role of MD After the Death
  • Inform bereaved what to expect
  • Give permission to grieve
  • Normalize grief reactions and individual
  • Monitor reactions and medical status
  • Acknowledge ones own feelings of loss, failure,
  • 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 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

  • 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
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