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.