Death, dying and End of Life (EOL)(JPFCM, Jeddah March 15, 2010)

Ghaiath M. A. HusseinMBBS, MHSc. (Bioethics)

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

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

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 skillso making & breaking bonds repeatedlyo need to grieve & deal with effectso pressure to develop realistic expectations

(e.g. balancing self-care with care of dying pt.)

o coping with conflicting demands (pts, families, social, workplace, personal needs)

o dealing with ethical issues (when does preserving life become prolonging death?)

o limited time to interact with colleagues (e.g. to debrief)

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 controlFor medical staff confronting death: too busy to grieve?

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

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

What are your thoughts?

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.

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

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

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]

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)

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

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.

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.

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.

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

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

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).

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

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);

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.

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

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.

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

Tips that have help…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.

Glasbergen on the dual scientific & humanitarian focus of Medicine

Decision making process in EOL care

• Interprofessional team consensus • Communication -- In collaboration with other members of the health

care team, the most responsible physician should: o a) as early as possible, discuss with patients while capable, their

prognosis and wishes for treatmento b) explore why the patient or substitute decision maker wishes treatment

to be continued and address these issues directly

c) discuss with the patient and/or substitute decision maker the rationale for withholding or withdrawing life-support treatment

d) describe palliative care measures which emphasize patient comfort and dignity

e) offer hospital resources such as social work, chaplaincy, or bioethics to assist the patient/family with their psychosocial, cultural, spiritual, and informational needs

f) document pertinent details of this communication in the patient's health record

Decision making process in EOL care• Negotiation -- The most responsible physician or other

designated member of the health care team 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.

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.

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.

• In rare circumstances, opioids and other drugs are rapidly titrated to treat physical symptoms following accepted dosing guidelines. They might be perceived to contribute to death; however, provided that the intent was genuinely to treat the symptoms, then such use is not euthanasia.

• Clinicians must familiarize themselves with the policies of the institution and pertinent statutes where they practice.

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.

واالحتضار الموت عند المسلم الطبيب فقه• المحتضر وتلقين “ الذكر : الله: ” اال اله ال أمواتكم لقنوا لحديث لله اال اله ال قول

: ÷ ÷ رسول قال قال عنه الله رضي جبل بن معاد وعن والترمذي داود وأبو مسلم رواه . في ويراعى داود أبو رواه الجنة دخل الله اال اله ال كالمه أخر كان من وسلم عليه الله

÷: التالية االداب التلقين. لتلقينه÷ داعي فال واال الشهادة ينطق ال المحتضر كان اذا ما حالة في التلقين يكون

يسمع÷ وانما يلقن فال الوعي عن الغائب أما النطق، على القادر للواعي التلقين يكون. نفسه في الشهادة يردد فربما الكالم عن العاجز أما الذكر

. الكالم- من يليق ال بما ويتكلم يضجر ال حتى التلقين في المحتضر على يلح ال أن ينبغيفيعاد- أخر بكالم بعدها يتكلم لم ما التلقين يعاود ال بالشهادة المحتضر نطق اذا

كالمه أخر ليكون به له .التعريف• وعنده له الدعاء

• القبلة - الى المحتضر توجيه• مات ٭ اذا المحتضر : ÷ تغميضعيني عليه الله صلى النبي أن مسلم رواه لما

تبعه÷ قبض اذا الروح ان قال، ثم فأغمضه بصره شق وقد سلمة أبي على دخل وسلم. البصر

• كامل األعين تغطيته عن المتغيرة لصورته R وسترا االنكشاف عن له صيانة R ا• الميت تجهيز في : االسراع : اذا الصالة تؤخرها ال ثالث علي يا له قال النبي عن

الترمذي أحمد رواه ،R كفؤا وجدت اذا واأليم حضرت، اذا والجنازة أتت،• على الفقهاء أجمع الميت ولقد تقبيل جواز

What Scares You?

“What scares me not death as an end of life, but a beginning of one”