Death, dying and End of Life


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

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  • إضافة حديث (لا ضرر ولا ضرار)
  • Let’s shift to a personal perspective: Consider the most wonderful death you can imagine for yourself.
    We need to establish ground rules of safety here, and honor them throughout the course:
    The stories we share stay in this room.
    There is no such thing as a ‘stupid’ question.
    We respect diversity within this group as well as in our patients/families, and co-workers.
    Honor your own comfort level. When working with very personal material, give yourself permission to abstain.
    [Teacher’s Note: Encourage people to disclose only what is comfortable for them to discuss in the group. There may be time for only a few stories. During the discussion, do not take notes, but model listening. Encourage people to go beyond abstractions or vague statements like, “I guess I’m old and just go to sleep.”]
    [Additional prompt questions if needed:]
    When you actually die, where are you?
    Have you been healthy up until now?
    How long have you known you’ve been dying?
    If you want to know that you are dying, how much time would you like to have before you die?
  • This framework is based on forms of cancer deaths.
    Most of us were not taught this information, but it is teachable, and it is also useful for counseling and coaching family members or staff.
  • This is what research has found – is this your personal experience as well, either for yourself or others?
  • Let’s start briefly with some background information.
    Physicians are generally dedicated and competent – so why are there such deficits in patient-physician communication in general as well as at the EOL?
    [Teacher’s Note: You may want to ask which of these next factors participants find particularly challenging, or to add some additional barriers that are not on the overhead, such as;
    “This is not part of my job description”
    Belief in what we’re already doing.
    Practicing defensive medicine through fear of litigation]
    Excellent resources are available for general communication skills development for physicians.
  • End-of-life issues will not be easy to discuss for those who believe that every patient death is a failure.
    End-of-life communication can be uniquely difficult, but there are explicit techniques that can be learned over time.
  • Sharing bad news is a special case of communication skills particularly challenging for ELC
    Here is a structure for effectively sharing bad news.
    Note that the three elements we’ve been working with are embedded in this process.
  • Get the facts.
    Prepare yourself emotionally
    Decide which words and phrases to use (write down a script)
    Practice delivering the news
    Establish what patient/family already knows, and how much they want to know
    Plan with recipient how information will be conveyed
    Arrange for a relatively comfortable, private place
    Allow for uninterrupted time
    Who else would the recipient like to be present?
    Chairs for all, introductions
    Some people provide an empty chair for the important person who could not be present
    Some physicians tape record the meeting
    Which of these are you least likely to do?
  • How might you give an advance alert?
    What do you think a dying person might hope for?
  • Here’s where we manage the consequences.
    Which one of the things on this list is most difficult for you?
  • Death, dying and End of Life

    1. 1. Death, dying and End of Life (EOL( Ghaiath M. A. Hussein MBBS, MHSc. (Bioethics(
    2. 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. 3. Birth is a miracle; death is a mystery. Neither fit easily into a biomedical model.
    4. 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. 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. 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. 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. 8. •What are your thoughts?
    9. 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. 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. 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. 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. 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. 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. 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. 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
    17. 17. 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
    18. 18. 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.
    19. 19. 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.
    20. 20. 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.
    21. 21. 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
    22. 22. Key is responsiveness to dying persons and their love ones expectation and needs.
    23. 23. 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).
    24. 24. 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
    25. 25. 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);
    26. 26. 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.
    27. 27. 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
    28. 28. 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.
    29. 29. 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
    30. 30. 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
    31. 31. 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
    32. 32. 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
    33. 33. Sharing Bad News • Step 1: Prepare • Step 2: Convey Information • Step 3: Follow Up Module #3
    34. 34. Step 1: Prepare • Prepare yourself • Prepare the recipients • Prepare the environment Module #3
    35. 35. 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
    36. 36. 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
    37. 37. 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.
    38. 38. Glasbergen on the dual scientific & humanitarian focus of Medicine
    39. 39. Communicating DNR • Wit - DNR.mp4
    40. 40. 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.
    41. 41. 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.
    42. 42. 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.
    43. 43. 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.
    44. 44. ‫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
    45. 45. What Scares You? “What scares me not death as an end of life, but as a beginning of one” GH