Death and Dying

Robert Gee, Ed.D.

Professor, Department of Behavioral Science
RGee@RossU.edu

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Learning Objectives
After this lecture, students will be able to:
1. Identify expected competencies for residents and practicing physicians related to end-of-life care.
2. Recognize the leading causes of death.
3. Describe critical elements of brain death, the death pronouncement, and other nonresponsive
conditions.
4. Describe the process for organ donation.
5. Describe psychosocial factors associated with death at various stages across the lifespan.
6. Understand the stages of grief and differentiate normal bereavement from an abnormal grief
reaction.
7. Describe the role of palliative care and services provided by hospice.
8. Describe health risks associated with bereavement and caretaking.
9. Discuss end-of-life decision making.
Reading: Fadem, B. (2012). Behavioral Science in Medicine, 2nd Edition. Baltimore. Lippincott Williams & Wilkins. [Ch. 4 & 26]
Location of practice questions: Canvas
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Personal
Experiences
• A universal experience
• Some of you have experienced death early
on/often
• For others, this material may be totally new

• What does “death” mean at different life

stages?
• How do people face their own death?
• How do survivors react to death?
• How do people (patients) prepare for and
cope with death?

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As a reminder…

Introduction to Biomedical Ethics (FM01, Fundamentals 1)

– Principle of autonomy
– Informed consent
– Patient preferences regarding quality of life
Law and Medicine (FM03/FM3X, Fundamentals 2)
– Advanced directives, living will, power of attorney, do not resuscitate (DNR).
Breaking Bad News (FM3X/04, Heme & Lymph II)
– SPIKES Model (Setting up, Perception of the patient, Invitation, Knowledge,
Emotions/Empathy, Strategy/Summary)

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1. Identify expected competencies for residents and practicing physicians related to end-of-life care.

Communication and physician behavior

matters….
• Allow terminally ill patients to die with as much dignity, comfort, and control as possible.
• Be able to identify a plan of care based on patients (and family’s) values, goals, and needs.
Effectively communicate that plan.
• Recognize that quality of life is defined by the patient – not by the physician.
• Be able to identify the primary decision maker when the patient is unable to communicate
and/or make medical decisions. Be aware of ethical and legal issues.
• Deliver difficult news with compassion and empathy.
• Understand psychosocial, spiritual, pathophysiologic issues for terminally ill patients.
• Respect cultural beliefs/customs.
• Understand special issues associated with children (either as patients or family members).
• Understand the bereavement process for the dying patient (and family).

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2. Recognize the leading causes of death.

Leading Causes of Death

Age-adjusted death rates for

the 10 leading causes of death
in 2016: United States, 2015
and 2016

Kochanek KD, Murphy SL, Xu JQ, Arias E.

Mortality in the United States, 2016. NCHS
Data Brief, no 293. Hyattsville, MD:
National Center for Health Statistics. 2017.
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2. Recognize the leading causes of death.

• Leading cause of death for both

men and women

• 1 in every 4 deaths in the U.S.

• Someone dies of a heart attack

every 43 seconds

• Costs $108.9 billion each year

(health care services, medications,
and lost productivity)

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2. Recognize the leading causes of death.

Leading Causes of Death by Age Group - 2016

National Vital Statistics System,

National Center for Health Statistics,
CDC. Produced by: National Center
for Injury Prevention and Control,
CDC using WISQARS™

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3. Describe critical elements of brain death, the death pronouncement, and other nonresponsive conditions.

What is death?
• In 2016 an estimated 56.9 million people died worldwide
• Two ways a person can die
1. Cardiopulmonary death
2. Brain death
(Both refer to irreversible loss of function)

• Death trajectories:

Lunney JR, Lynn J, Fole DJ, et al. Patterns of

functional decline at the end of life. JAMA
2003; 289:2387-2392
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3. Describe critical elements of brain death, the death pronouncement, and other nonresponsive conditions.

Diagnosing Brain Death

• Specific requirements vary by state but in general:
• Patient is in a coma (i.e., prolonged unconsciousness) with clear etiology and irreversibility.
– Examples include: Severe head injury, hypertensive intracerebral hemorrhage, hypoxic event, fulminant hepatic failure, etc.

• Absence of complicating factors that might confound a clinical diagnosis

– Examples include: Shock/hypotension, hypothermia, sedatives/anesthesia, metabolic abnormalities, brainstem encephalitis,
etc.
Reflex Afferent Efferent
• Complete neurological examination Pupillary light Optic (CN II) Oculomotor (CN III)
– Examination of patient (e.g., absence of spontaneous Corneal Trigeminal (CN V) Facial (CN VII)
movement, responses to stimuli, etc.)
Oculomotor (CN III) and
– Absence of brainstem reflexes Oculocephalic Vestibulocochlear (CN VIII)
abducens (CN VI)
– No spontaneous respiration
Gag Glossopharyngeal (CN IX) Vagus (CN X)

• Confirmatory testing (e.g., angiography, electroencephalography, brain imaging, etc.)

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3. Describe critical elements of brain death, the death pronouncement, and other nonresponsive conditions.

Abnormal Posturing

• Decorticate posturing
• Involuntary flexion ‐ indicates that
or extension of the there may be
arms and legs damage to areas
including the
cerebral
• Indicates severe hemispheres, the
internal capsule,
brain injury
thalamus,
midbrain
• Medical emergency
requiring
immediate medical • Decerebrate posturing
attention ‐ more severe
‐ indicates brain
stem damage
Ball JW, Dains JE, Flynn JA, Solomon BS, Stewart RW. Neurologic system. In: Ball JW, Dains JE, Flynn JA, Solomon BS, Stewart RW, eds.
Seidel's Guide to Physical Examination. 8th ed. St Louis, MO: Elsevier Mosby; 2015:chap 22
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3. Describe critical elements of brain death, the death pronouncement, and other nonresponsive conditions.

Other Nonresponsive Conditions

Persistent Vegetative State Locked-in Syndrome
1. No evidence of awareness of self or environment and an • Patient is completely aware, and cognitively intact
inability to interact with others
• Complete paralysis of nearly all voluntary muscles in the
2. No evidence of sustained, reproducible, purposeful, or body except for vertical eye movements and blinking
voluntary behavioral responses to visual, auditory, tactile, or
noxious stimuli • Acute ventral pontine lesions are most common cause
(hemorrhage)
3. No evidence of language comprehension or expression
• Difficult to diagnose - may mimic loss of consciousness
4. Intermittent wakefulness manifested by the presence of
sleep-wake cycles • No standard treatment or cure
5. Sufficiently preserved hypothalamic and brain-stem • Extremely rare for significant motor function to return
autonomic functions to permit survival with medical and
nursing care • Brain-computer interfaces show promise

6. Bowel and bladder incontinence • Family usually recognizes patient is aware before
healthcare providers
7. Cranial-nerve reflexes (pupillary, oculocephalic, corneal,
vestibulo-ocular, gag) and spinal reflexes preserved to
various extents
Medical Aspects of the Persistent Vegetative State. The Multi-Society Laureys S, Pellas F, Van Eeckhout P, Ghorbel S, Schnakers C, Perrin F, et al. The locked-in syndrome:
Task Force on PVS. N Engl J Med. 1994 May 26;330(21):1499-508 what is it like to be conscious but paralyzed and voiceless? Prog Brain Res. 2005;150:495–511.

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4. Describe the process for organ donation.

Organ Donation
Persons who have suffered a non-survivable brain injury (e.g., head trauma, stroke, etc.) have the
opportunity to be organ donors…

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4. Describe the process for organ donation.

Organ Donation

114,000+ Number of men, women and children on

the national transplant waiting list as of April 2018

Every 10 minutes Only 3 in 1,000

34,770 transplants 20 people die each
another person is people die in a way
were performed in day waiting for a
added to the that allows for
2017 transplant
waiting list organ donation

NPR - Organ Donation https://www.organdonor.gov

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5. Describe psychosocial factors associated with death at various stages across the lifespan.

Infant and Childhood Death

• Loss of a child is profound for
parents - linked with depression
• Prenatal death (e.g., miscarriage) -
parents may feel isolated
• Although trending downward, high
infant mortality rate in the U.S.
• Sudden infant death syndrome
(SIDS)
– Usually between 2-4 months
– No known cause - others may be
suspicious and parents often feel intense
guilt

Kochanek KD, Murphy SL, Xu JQ, Arias E. Mortality in the United States, 2016. NCHS Data
Brief, no 293. Hyattsville, MD: National Center for Health Statistics. 2017
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5. Describe psychosocial factors associated with death at various stages across the lifespan.

Developmental Perspectives on Death

Childhood Adolescence Young Adulthood

• Unrealistic view of • May have unrealistic • Particularly difficult -

death views feel most ready to
• Before age 5, see • Tend to feel begin their lives
death as temporary invulnerable / • Developing intimate
(like sleeping) invincible relationships and
• Misunderstanding • Confronting terminal exploring sexuality
may have emotional illness can be • Planning for the
consequences (may difficult (may feel future - marriage,
blame themselves or angry or “cheated.”) children, career, etc.
their behavior) • Anger may be
• After age 5, begin to displaced towards
accept death as care providers
universal and final

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5. Describe psychosocial factors associated with death at various stages across the lifespan.

Developmental Perspectives on Death

• More aware of accepting death but also have a lot of fears
• Fear death more than younger adults
• Suicide rates increase - instability in the workplace, ageism, relationship fractures
such as divorce or the death of a spouse, children leaving home and chronic illness
Middle-age
and isolation

• Think about death more

• Chronic illness
• May be less anxious about death
• Suicide rates for men continue to increase (especially)
Late Adulthood
• Concern about whether life has had value and being a burden on others

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6. Understand the stages of grief and differentiate normal bereavement from abnormal grief.

Kubler-Ross - Stages of Grief

Stage Patient Statements What is Happening Physician Response

“No!”; “This is not happening”; “They Supportive actions; Motivational
Denial will be home in a few minutes/hours”
Developing a false, preferable reality
Interviewing

“Why me? This is not fair! - Who

Remain detached and
is to blame?"; "Why would God Realizes denial cannot continue;
Anger let this happen?”; You don’t misplaced feelings of rage and envy
nonjudgmental; Patient-centered
care; Motivational Interviewing
understand”
Hope that this can be undone or avoid a
“I'll do anything”; “Please God, take Patient-centered care; Motivational
Bargaining me"
cause of grief – An understanding … but if
Interviewing
I could just do something…

An understanding of the certainty of

“Why bother”; "I'm going to die - Supportive clinical care; Risk
death - the idea of living may become
Depression what's the point?"; "I miss her/him,
pointless - disconnecting from things of
assessment; Patient-centered care;
why go on?“; Silence Motivational Interviewing
love and affection

Supportive clinical care; Risk

“It's going to be okay"; "I can't fight it, Coming to terms with mortality or
Acceptance I may as well prepare for it.“ inevitable future, or that of a loved one
assessment; Patient-centered care;
Motivational Interviewing

Kübler-Ross E. On death and dying. Routledge; 1973.

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6. Understand the stages of grief and differentiate normal bereavement from abnormal grief.

Grief and Depression

Normal Abnormal
Strong emotions, crying, anger, • According to the DSM-5 - “an expectable
Persistent depressed mood
etc. or culturally approved response to a
Inability to anticipate happiness
common stressor or loss, such as the death
Changes in appetite and sleep of a loved one, is not a mental disorder”
or pleasure
Feelings of worthlessness and • Dysphoria in grief is likely to decrease with
Guilt, questioning life choices
self-loathing time but can occur in waves
Self-critical or pessimistic
Feelings of emptiness and loss
ruminations • Not everyone experiences deep depression
Seeing or talking to the
deceased
Thoughts of suicide • People who do not have deep initial grief
may still have problems later
Coping strategies (e.g.,
smoking, drinking, comfort
eating) American Psychiatric Association. Diagnostic and statistical manual of
mental disorders (DSM-5®). American Psychiatric Pub; 2013 May 22.

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6. Understand the stages of grief and differentiate normal bereavement from abnormal grief

Ambiguous Loss

• Losses without closure or understanding Examples include:

• Leaves a person searching for answers – • End of a relationship or divorce
can delay the process of grieving
• Death of a loved one or an ex-spouse
• Unresolved grief can make it difficult for
• Infertility / miscarriage / termination of
people to move on with their lives
a pregnancy
• Individuals may fluctuate between
• Alzheimer’s disease
feeling hope and hopelessness
• Mental illness

• Anticipatory grief – realizing that death

may be imminent
Moyer B. “A Death of One’s Own; 2000.

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6. Understand the stages of grief and differentiate normal bereavement from abnormal grief

Mourning and Funerals

• Death has a significant impact on those around the individual
– Recognition of everyone’s mortality and the circle of life
• Average costs: Funeral - $7,000-$10,000 / Cremation - $1500-$4000 / Obituary - $200-$500
• Western funerals typically include:
– Preparation of the body
– Religious ritual
– Eulogy
– Procession
– Wake or Shiva
• Military funerals often include firing weapons and a flag on the coffin
• Funeral traditions vary across cultures but all function to mark the endpoint of a person’s life and the
starting point for survivors from which they resume life

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7. Describe the role of palliative care and services provided by hospice.
Palliative Care versus Hospice Care
Palliative Care
To assess and treat the patent’s pain and other physical,
Goals psychosocial, and spiritual concerns
Patients who have chronic, complicated, or advanced medical
diseases; There is no time limit on life expectancy - patients may
Patients or may not be dying; Patients may receive curative treatments;
May participate in research studies
Usually centered in hospitals, rehabilitation centers, assisted
Where living facilities, nursing homes, etc.
Palliative care is a medical subspecialty; physicians and allied
Care health professionals undergo additional training in
providers symptom/disease management; team-based care
Paying for In general - No special insurance benefit; third-party insurance
services generally covers palliative care services
Hospice Care
To keep patient comfortable, as free as possible from
pain/symptoms; Maintain a good quality of life for time
remaining; Death is inevitable outcome; Patient and family are
focus of care
Patients who are near the “end-of-life” / terminal illness and are
likely to die within 6-months, if disease runs its normal course
Most often “at home”; occasionally can be in assisted living
facility; nursing home
Team-based approach, led by physcain, nurses; Allied health
specialists may also include spiritual, psychosocial, care support;
Often requires significant care from family members
Medicare/federally funded program; Many states Medicaid plans
and private insurance pay for hospice services; Patient who
chooses hospice agrees to give up curative treatments – in return
for other types of support and supplies
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8. Describe health risks associated with bereavement and caretaking.

Traumatic Loss, Stress, and Physiology on

Caregivers

• Inflammatory state (impact on chronic disease)

• Decreased immune response
• Risk of “broken heart syndrome”
– Caretaker risk of sudden death is >60 higher than matched cohorts (highest
effect with illness is dementia).
– Stressful life event of losing a partner increases risk for acute myocardial
infarction as well as atrial fibrillation (especially for unexpected losses).

Moyer B. “A Death of One’s Own; 2000. Graff S, Fenger-Grøn M, Christensen B, Pedersen HS, Christensen J, Li J, Vestergaard M. Long-term risk
of atrial fibrillation after the death of a partner. Open heart. 2016 Mar 1;3(1):e000367.

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9. Discuss end-of-life decision making.

Physician-Assisted Death
• At the request and with consent of the patient, doctor provides the knowledge or means for
person to end their own life (e.g., counseling about lethal does of drugs or supplying a
drug).
• Patient self-administers the means of death (i.e., different from euthanasia where doctor
administers).
• Contrary to Hippocratic oath and many religions but also considered a fundamental
freedom to live and die according to one’s own desires and beliefs.
• Currently legal in California, Colorado, District of Columbia, Hawaii (i.e., 01/01/2019),
Montana, Oregon, Vermont, and Washington
• Requires minimum age of 18, <6 months of life expectancy, and two oral (at least 15 days
apart) and one written request to physician.

Moyer B. “A Death of One’s Own; 2000. Sandy Bem / NY Times – The Last Day of her Life

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9. Discuss end-of-life decision making.

How Doctor’s Die

• Johns Hopkins study – 765 doctors were asked
about their own end-of-life care when faced
with certain situations (e.g., debilitating brain
damage, severe dementia, etc.)
– 90% - No CPR

– 87% - No mechanical ventilation

– 85% - No chemotherapy

– 81% - No major surgery
– 79% - No invasive testing
– 77% - No feeding tube
– 62% - No antibiotics
– 59% - No IV hydration
“Doctors … know enough about modern medicine to know its limits. …
For all the time they spend fending off the deaths of others, they tend to
be fairly serene when faced with death themselves. They know exactly
what is going to happen, they know the choices, and they generally have
access to any sort of medical care they could want. But they go gently.”
The Trumpet
Gallo JJ, Straton JB, Klag MJ, Meoni LA, Sulmasy DP, Wang NY, Ford DE. Life‐sustaining
treatments: What do physicians want and do they express their wishes to others?.
Journal of the American Geriatrics Society. 2003 Jul;51(7):961-9.

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9. Discuss end-of-life decision making.

End-of-life Discussions with Patients

• Physicians and patients are ambivalent to talk about death and often avoid these
conversations.
• Opportunity for patients to define their own goals / expectations for care they want to
receive.
• Aggressive care is often associated with worse patient quality of life and worse bereavement
adjustment.
• End-of-life discussions are associated with less aggressive medical care near death and
earlier hospice referrals.
• Patients prefer discussions earlier and with greater honesty than physicians may perceive –
timing, content, delivery, and physician-patient relationship are key.

Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, Mitchell SL, Jackson VA, Block SD, Maciejewski
PK, Prigerson HG. Associations between end-of-life discussions, patient mental health, medical care near
death, and caregiver bereavement adjustment. JAMA. 2008 Oct 8;300(14):1665-73.

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9. Discuss end-of-life decision making.

A “Good” Death
• Control of pain and other physical symptoms.
• Involvement of people important to the patient.
• Death is not usually an individual experience; occurs within a social context of
family, significant others, friends, and caregivers.
• A degree of acceptance by the patient.
• Doesn't mean that the patient likes what is going on, or that they have no hopes The art of living well
– it just means that he can be realistic about the situation. and dying well are one.
• A medical understanding of the patient's disease. Epicurus
• Most patients, families, and caregivers come to physicians in order to learn
something about what is happening medically, and it is important to recognize
their need for information.
• A process of care that guides patient understanding and decision making.
• One great physician does not equal great care - it takes a coordinated system of
providers.
Meier EA, Gallegos JV, Thomas LP, Depp CA, Irwin SA, Jeste DV. Defining a good death (successful dying): literature review
and a call for research and public dialogue. The American Journal of Geriatric Psychiatry. 2016 Apr 1;24(4):261-71.
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9. Discuss end-of-life decision making.

Additional Resources

• Sullivan AM, Lakoma MD, Block SD. The status of medical education in end-of-life care.
Journal of General Internal Medicine. 2003 Sep 1;18(9):685-95.
• Fadem B. Behavioral science in medicine. Lippincott Williams & Wilkins; 2012 Mar 8.

• Teno JM, Clarridge BR, Casey V, Welch LC, Wetle T, Shield R, Mor V. Family perspectives on
end-of-life care at the last place of care. JAMA. 2004 Jan 7;291(1):88-93.

• Committee on Bioethics. Palliative care for children. Pediatrics. 2000 Aug 1;106(2):351-7.

• Roter D, Hall JA. Doctors talking with patients/patients talking with doctors: improving
communication in medical visits. Greenwood Publishing Group; 2006.

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