A lecture I gave to the residents of the joint Program of Community and Family Medicine in Jeddah, Saudi Arabia (2007)

1. Death, dying and End of Life (EOL(
Ghaiath M. A. Hussein
MBBS, MHSc. (Bioethics(

2. Overview
• Introduction
• What makes death a unique event?
• what is a ‘good death’?
• What are your goals when caring for a dying
patient?
• How to negotiate these goals with your patient &
Family
• Recommendations

3. Birth is a miracle; death is a mystery. Neither
fit easily into a biomedical model.

4. Nature of the problem
•1.In Medicine generally physical & psychological demands high.
Working with death & dying is work of a special nature. Places
additional & unusual demands on coping skills
omaking & breaking bonds repeatedly
oneed to grieve & deal with effects
opressure to develop realistic expectations (e.g. balancing self-care with
care of dying pt.(
ocoping with conflicting demands (pts, families, social, workplace,
personal needs(
odealing with ethical issues (when does preserving life become prolonging
death?(
olimited time to interact with colleagues (e.g. to debrief(

5. The most stressful jobs
•Teacher: high school, inner city, higher primary grades
•Police officer
•Miner
•Air traffic controller
•Junior hospital doctor
•Stockbroker
•Journalist
•Customer-service/Complaints Dept worker
•Waitress
•Secretary/receptionist
•Machine-paced worker
•Bus driver
•Nurse
Common thread/s?
•Fear of losing control / low degree of freedom on how to meet
demands
Independence at heart of stress control
For medical staff confronting death: too busy to grieve?

6. Nature of the problem
2. Easy to miss signs & symptoms of ‘bereavement
overload’ (term refers to effects of serial losses
originally applied to experiences of the elderly)
 can be very insidious
 old emotional reactions can be triggered w/o you
knowing
 expectations of what you can do to support can be
unrealistic

7. Nature of the problem
•3.You risk costs of excessive stress if you:
•Ignore usual stress & grief reactions
•Don’t take sufficient time-out / try to do too much
•Lack organisational & social support
End up hurting yourself & reducing your ability to help others

8. •What are your thoughts?

9. Life and Death
• Two of the attributes
that all humans
share are the
experiences of being
born and the fact
that everyone would
eventually die.

10. Issues in EOL Care
Death and Dying in the our culture
Pain Management
Communicating with Patients and Families
Making Difficult Decisions
Non-Pain Symptom Management
Venues and Systems of Care
Psychiatric Issues and Spirituality

11. Death and Culture
• Fear of Dying is innate
• Death is a socially constructed idea
• The fears and attitudes people have towards death
and dying are learned from educational and cultural
vehicles such as the languages, arts, and religion
• Every culture has its own coherent explanation of
death which is believed to be right by its members

12. Basic principles of Islamic philosophy on
LIFE and death
•Lives and bodies are ultimately owned by their
Creator
•humans are only “vicegerents” so their
possession of their bodies is not absolute
•human life is a gift of God that should be
respected and preserved as long as possible

13. From Koran and Sunna
•“he who saved one life should be regarded as
though he had saved the lives of all mankind.”
TMQ [5:32[
•No harm to oneself, “… (And) make not your
own hands contribute to (your) destruction”
TMQ [2:195[
•The Hadith: "There is no (harm) injury nor return
of (harm) injury." [Malik's Muwatta, Book 36:
1429[

14. Basic principles of Islamic philosophy on Life
and death
•No clear cut “religious” definition of death
•Contemporary scholars came to adopt the
following definition
•“The death of that part of the brain responsible
for the primary vital functions, which is called the
brain stem, is a reliable indicator of the
occurrence of death”
•)Statement of The Islamic Organization for Medical Sciences About the
Medical Definition of Death, 1996(

15. Fantasy Death Exercise
Module #1
What are your criteria for a ‘good’ death?
The only hitch, as in life, is that you have to die.
Imagine you are there right now.
Notice where you are, what your are doing, who is with you, what it is
like, perhaps sounds, smells, other sensory specifics…

16. Elements of ‘good death’
• Adequate pain and symptom managements,
• Avoiding a prolonged dying process,
• Clear communication about decisions by patient,
family and physician,
• Adequate preparation for death, for both patient and
loved ones,
• Feeling a sense of control,
• Finding a spiritual or emotional sense of completion,
• Affirming the patient as a unique and worthy person,
• Strengthening relationships with loved ones, Not
being alone.
• Sense of self satisfaction with life acheivements

21. Signs that Suggest Active Dying
No intake of water or food
Dramatic skin color changes
Respiratory mandibular movement (RMM(
Sunken cheeks, relaxation of facial muscles
Rattles in chest
Cheyne-Stokes respirations
Lack of pulse
Module #1

22. Normal Dying
• Loss of appetite
• Decreased oral fluid intake
• Artificial food/fluids may make situation worse
o Breathlessness
o Edema
o Ascites
o Nausea/vomiting
• Loss of appetite and diminished fluid intake are a
part of the normal dying process. Trying to
counteract these natural trends may lead to more
discomfort for the patient without affecting the
outcome.

23. Terminology used in EOL
• Imminent death: A patient facing imminent
death has an acute illness whose reversal or
cure would be unprecedented and will certainly
lead to death during the present hospitalization
within hours or days, without a period of
intervening improvement.
• "Life-sustaining treatments" or intensive care
cannot achieve their intended effect, and lie
outside the standard of care.

24. Terminology used in EOL
• Lethal condition: A patient with a lethal
condition has a progressive, unrelenting terminal
disease incompatible with survival longer than 3-
6 months. Intensive care should not be provided
for the underlying condition, since this is
inconsistent with the goal of intensive care (see
above).
• Life-sustaining treatment including intensive care
should be provided to treat superimposed,
reversible illness only with clearly defined and
achievable goals in mind.

25. Terminology used in EOL
• Severe, irreversible condition: A patient has a
severe and irreversible condition impairing
cognition or consciousness but death may not
occur for many months. Examples of such
conditions include persistent vegetative state and
severe dementia.
• Intensive care should not be provided for the
underlying condition, since this is inconsistent
with the goal of intensive care

26. Key is responsiveness to dying persons and
their love ones expectation and needs.

27. Definition of palliative care
• The active total care of patients whose disease is
not responsive to curative treatment.
• Control of pain, of other symptoms, and of
psychological, social and spiritual problems, is
paramount.
• The goal of palliative care is achievement of the
best quality of life for patients and their families.
(WHO, 1990).

28. Palliative care (WHO, 1990).… cont.
• affirms life and regards dying as a normal
process;
• neither hastens nor postpones death;
• provides relief from pain and other distressing
symptoms;
• integrates the psychological and spiritual aspects
of care, fostering opportunities to grow;
• offers an interdisciplinary team to help residents
live as actively as possible until death; and
• offers support systems for the family during the
resident’s illness and their own bereavement

29. Core Principles for End-of-Life Care
• Respect the dignity of both patient and caregivers;
• Be sensitive to and respectful of the patient's and
family's wishes;
• Use the most appropriate measures that are
consistent with patient choices;
• Encompass alleviation of pain and other physical
symptoms;
• Assess and manage psychological, social, and
spiritual/religious problems;
• Offer continuity (the patient should be able to
continue to be cared for, if so desired, by his/her
primary care and specialist providers);

30. Core Principles for End-of-Life Care
• Provide access to any therapy which may
realistically be expected to improve the patient's
quality of life, including alternative or nontraditional
treatments;
• Provide access to palliative care and hospice care;
• Respect the right to refuse treatment;
• Respect the physician's professional responsibility
to discontinue some treatments when appropriate,
with consideration for both patient and family
preferences;
• Promote clinical and evidence-based research on
providing care at the end of life.

31. Goals of care for terminally ill
• Preventing and treating pain and other symptoms;
• Supporting families and caregivers;
• Ensuring the continuity of care;
• Ensuring respect for persons and informed
decision making;
• Attending to well-being, including existential and
spiritual concerns; and
• Supporting function and survival duration are
general issues that are common for most end-of-
life care patients
Wit - Pain.mp4

32. How to negotiate goals of care?
1.Create the right setting.
2.First, determine what the patient/family know.
3.Explore what they are expecting or hoping
for.
4.Suggest realistic goals.
5.Respond empathically
6.Make a plan and follow through.
7.Review and revise periodically, as
appropriate.

33. Module #3
Identified Deficits in Physician
Communication Skills
• Talk too much
• Rarely explore patients’ values & attitudes
• Discuss uncertainty using vague language
Tulsky, et al., 1998
• Avoid patients’ affective concerns
Parle, et al., 1997
• Overemphasize cognitive communication
• Fail to assess patient understanding
Braddock, et al., 1999

34. General Challenges to Patient-Physician
Communication
• Time constraints
• Language differences
• Mismatch of agendas
• Lack of teamwork
• Discomfort with strong emotions
• Quality of physician training
• Resistance to change habits
• Buckman (1984), Ford et al (1994), Buss
(1998)
Module #3

35. Unique Challenges in Communication at the end of
life:
• Emotionally laden material
▫ For patient, for family, for providers
• Issues of uncertainty are common
▫ Prognosis
▫ What is it like to die?
▫ The meaning of death
Module #3

36. Tips that have helped
• Patients, of course, need accurate information.
But we all also need to feel heard. “empathetic
listening”
• Don’t feel that you need to discuss all issues in
one visit
• Consider scheduling an additional visit
• Don’t feel you have to do everything yourself.
• Include family and friends if the patient agrees

37. Sharing Bad News
• Step 1: Prepare
• Step 2: Convey Information
• Step 3: Follow Up
Module #3

38. Step 1: Prepare
• Prepare yourself
• Prepare the recipients
• Prepare the environment
Module #3

39. Step 2: Convey Information
• Establish empathic connection
• Give an advance alert
• Convey realistic information in a clear manner
• Observe and respond to cognitive and affective
reactions
• Clarify ambiguity
• Restore and catalyze hope
Module #3

40. Step 3: Follow Up
• Set concrete goals
• Connect patient/family with support systems
• Arrange follow-up meetings
• Convey commitment and non-abandonment
• Communicate with treatment team
Module #3

41. Tips that have helped…cont.
• Encourage patient-family agenda setting and
advance care planning.
• Tell the patient and family what is possible and
make plans together.
• Use each episode in the ICU or ER as a “rehearsal.”
• Know your resources.
• Most families never hear from their physician after a
death. Consider making a follow-up phone call or a
visit to answer questions and support family
caregivers, and sending a condolence card.

42. Glasbergen on the dual scientific &
humanitarian focus of Medicine

44. Communicating DNR
• http://www.youtube.com/watch?v=p-oktCUA0mk&f
Wit - DNR.mp4

45. Decision making process in EOL care
• Negotiation -- The most responsible physician should attempt to
negotiate a plan of treatment that is acceptable to both the
patient/substitute decision-maker and the health care providers
actively involved in the care of the patient.
• Intensive care consultation -- If intensive care admission may
be required, a consultation from an intensive care physician
should be obtained as early as possible.
• Second opinion -- The patient or substitute decision-maker
should be given an opportunity to request a second opinion, and
assisted by the health care team to obtain one.
• Trial of Therapy – A time-limited trial of therapy may result from
the negotiation.
• Patient Transfer – The patient or substitute decision-maker
should be given an opportunity to identify another provider willing
to assume care of the patient, and assisted by health care team
to do so.

46. Decision making process in EOL care
• Mediation -- A person designated by the hospital for
this purpose should meet with the patient/substitute
decision maker and health care team to attempt to
mediate the disagreement.
• Arbitration/adjudication
• Notice of intention to withhold or withdraw life-
sustaining treatment.
• Withholding/withdrawal of life-sustaining
treatment – If all the procedures in this policy have
been followed, the health care provider may
withhold or withdraw the disputed life-sustaining
treatment including intensive care.

47. Take-Home Messages
• Patients have the right to refuse any medical
treatment, even artificial nutrition and hydration.
• Withdrawal or withholding of treatment is a
decision/action that allows the disease to progress
on its natural course. It is not a decision or action
intended to cause death.
• Clinicians must familiarize themselves with the
policies of the institution and pertinent statutes
where they practice.

48. Take-Home Messages
• Impediments to good care include misconceptions about
legal and ethical issues, as well as unfamiliarity with the
practical aspects of withholding or withdrawing
treatment.
• Patients may be transferred to an acute care setting
where life-sustaining measures are administered
• If the patient is close to dying, make sure the family
knows that a dry mouth may not improve with IV fluids.
• Dehydration is a natural part of the dying process.
Artificial fluids and hydration will not help the terminally
ill cancer patient feel better in most situations.

49. ‫والتحتضار‬ ‫الموت‬ ‫عند‬ ‫المسلم‬ ‫الطبيب‬ ‫فقه‬
• ‫المحتضر‬ ‫وتلقين‬ ‫الذكر‬‫داود‬ ‫وأبو‬ ‫مسلم‬ ‫رواه‬ “‫ال‬ ‫ال‬ ‫اله‬ ‫ل‬ :‫أمواتكم‬ ‫”لقنوا‬ ‫لحديث‬ ‫ل‬ ‫ال‬ ‫اله‬ ‫ل‬ ‫قول‬ :
‫ال‬ ‫اله‬ ‫ل‬ ‫كلمه‬ ‫أخر‬ ‫كان‬ ‫من‬ ‫وسلم‬ ‫عليه‬ ‫ال‬ ‫رسول‬ ‫قال‬ :‫قال‬ ÷‫عنه‬ ‫ال‬ ‫جبل÷رضي‬ ‫بن‬ ‫معاد‬ ‫وعن‬ ‫والترمذي‬
÷:‫التالية‬ ‫الداب‬ ‫التلقين‬ ‫في‬ ‫ويراعى‬ .‫داود‬ ‫أبو‬ ‫رواه‬ ‫الجنة‬ ‫دخل‬ ‫ال‬
.‫لتلقينه‬ ‫داعي‬ ‫فل‬ ‫وال‬ ‫الشهادة‬ ‫ينطق‬ ‫ل‬ ‫المحتضر‬ ‫كان‬ ‫اذا‬ ‫ما‬ ‫تحالة‬ ‫في‬ ‫التلقين‬ ‫يكون‬ ÷
‫عن‬ ‫العاجز‬ ‫أما‬ ‫الذكر‬ ‫يسمع‬ ‫وانما‬ ‫يلقن‬ ‫فل‬ ‫الوعي‬ ‫عن‬ ‫الغائب‬ ‫أما‬ ،‫النطق‬ ‫على‬ ‫القادر‬ ‫للواعي‬ ‫التلقين‬ ‫÷يكون‬
.‫نفسه‬ ‫في‬ ‫الشهادة‬ ‫يردد‬ ‫فربما‬ ‫الكل م‬
.‫الكل م‬ ‫من‬ ‫يليق‬ ‫ل‬ ‫بما‬ ‫ويتكلم‬ ‫يضجر‬ ‫ل‬ ‫تحتى‬ ‫التلقين‬ ‫في‬ ‫المحتضر‬ ‫على‬ ‫يلح‬ ‫ل‬ ‫أن‬ ‫-ينبغي‬
‫أخر‬ ‫ليكون‬ ‫به‬ ‫له‬ ‫التعريف‬ ‫فيعاد‬ ‫أخر‬ ‫بكل م‬ ‫بعدها‬ ‫يتكلم‬ ‫لم‬ ‫ما‬ ‫التلقين‬ ‫يعاود‬ ‫ل‬ ‫بالشهادة‬ ‫المحتضر‬ ‫نطق‬ ‫اذا‬ -
‫.كلمه‬
• ‫وعنده‬ ‫له‬ ‫الدعاء‬
• - ‫القبلة‬ ‫الى‬ ‫المحتضر‬ ‫توجيه‬
• ‫٭‬‫مات‬ ‫اذا‬ ‫المحتضر‬ ‫عيني‬ ‫تغميض‬‫سلمة‬ ‫أبي‬ ‫على‬ ‫دخل‬ ÷‫وسلم‬ ‫عليه‬ ‫ال‬ ‫صلى‬ ÷ ‫النبي‬ ‫أن‬ :‫مسلم‬ ‫رواه‬ ‫لما‬
‫البصر‬ ‫تبعه‬ ‫قبض‬ ‫اذا‬ ‫الروح‬ ‫ان‬ ،‫قال‬ ‫ثم‬ ‫فأغمضه‬ ‫بصره‬ ‫شق‬ ‫وقد‬ .
• ‫كامل‬ ‫تغطيته‬‫العين‬ ‫عن‬ ‫المتغيرة‬ ‫لصورته‬ ‫ا‬ً ‫وستر‬ ‫النكشاف‬ ‫عن‬ ‫له‬ ‫صيانة‬ ‫ا‬ً
• ‫الميت‬ ‫تجهيز‬ ‫في‬ ‫الرسراع‬،‫تحضرت‬ ‫اذا‬ ‫والجنازة‬ ،‫أتت‬ ‫اذا‬ ‫الصلة‬ :‫تؤخرها‬ ‫ل‬ ‫ثل ث‬ ‫علي‬ ‫يا‬ :‫له‬ ‫قال‬ ‫النبي‬ ‫عن‬
‫الترمذي‬ ‫أتحمد‬ ‫رواه‬ ،‫ا‬ً ‫كفؤ‬ ‫وجدت‬ ‫اذا‬ ‫واليم‬
• ‫على‬ ‫الفقهاء‬ ‫أجمع‬ ‫ولقد‬‫الميت‬ ‫تقبيل‬ ‫جواز‬

50. What Scares You?
“What scares me not death as an
end of life, but as a beginning of
one” GH