2. David L. Sharp, M.D. father killed in MVA when I was 4 years old Inspiration to medical career – my Uncle Fred Zaidan Raised/educated at Girard College in Philadelphia, PA University of Pittsburgh – B.S. & M.D. married to Babs – 4 children – 8 grandchildren Pilot Family Medicine residency in NJ – lived there 19 yrs moved to GRR when daughter entered Hope College office-based family physician most of career boards in Family Medicine & Hospice and Palliative Care spiritual gift: mercy physician for Southwest 110 Team, Hospice of Michigan

3. Dr. Dave at the woodpile, 2004

4. Ben Casey, M.D.

5. Creation… according to Genesis  Genesis 2:7  “Then the Lord God formed man from the dust of the ground, and breathed into his nostrils the breath of life; and the man became a living being.

6. Creation…. according to the Boston Planetarium  “…and out from the primordial ooze came life…”  “… and it evolved into many species…”  “… and along came ‘man’…”

7. Death - Wikipedia  Death is the permanent termination of the biological functions that sustain a living organism.  Phenomena which commonly bring about death include:  Old age  Predation  Malnutrition  Disease  Accidents or trauma resulting in terminal injury

8. Death - Wikipedia  Death is the permanent termination of the biological functions that sustain a living organism.  Phenomena which commonly bring about death include:  Old age  Predation  Malnutrition  Disease  Accidents or trauma resulting in terminal injury

9. Death - Wikipedia  Death is the permanent termination of the biological functions that sustain a living organism.  Phenomena which commonly bring about death include:  Old age  Predation  Malnutrition  Disease  Accidents or trauma resulting in terminal injury

10. how long is “Life?”  Genesis 6:3  “Then the Lord said, ‘My spirit shall not abide in mortals forever, for they are flesh; their days shall be one hundred twenty years.’”

11. Ashley Montagu “The idea is to die young … as late as possible.”

12. cell death  hypoxia  acidosis  entropy  apoptosis  free radicals  toxic milieu  tumor growth

13. dying process involves:  discovery  insight  adjustment to constantly changing circumstances  personal reaction  dealing with others’ reaction to one’s illness and decline  developing strategies to avoid destruction of “self”

14. creating a map to the end  “What would be left undone if you died today?”  “How can you live most fully in whatever time is left?”  “What are your goals for yourself?”

15. what is “to accomplish?”  The FIVE THINGS;  “I forgive you”  “Forgive me”  “Thank you”  “I love you”  “Good-bye”

16. history: The Spanish Death  A book titled “Agonia del Transito de la Muerte” (Agony of the Passing of Death) written in 1537 by Alejo de Venegas, elaborated on the "Spanish Death.”  He advised that friends and relatives should gather around the dying person. These treatises might have been a plausible, but distant, prelude to the modern hospice movement.  Toda MFS. Ars moriendi, European J Pall Care, 1997: 4(5):164-168.

17. what is “a good death?”  “To those who know, no explanation is necessary; to those who don’t know, no explanation is sufficient.” “Dying Well - Peace & Possibilities at the End of Life” – p. 31 Ira Byock, M.D.

18. fears associated with death and dying:  “I don’t want to die in pain…”  “I don’t want to suffer…”  “I don’t want to be a burden on my family…”  “I don’t want to leave my family with debts…”  “I don’t want to go through all our savings…”

19. David Gerrold “Life is hard. Then you die. Then they throw dirt in your face. Then the worms eat you. Be grateful it happens in that order.”

20. Elizabeth Kübler-Ross  The Five Stages of Dying:  Denial  Anger  Bargaining  Depression  Acceptance

21. Death - Wikipedia  Death is the permanent termination of the biological functions that sustain a living organism.  Phenomena which commonly bring about death include:  Old age  Predation  Malnutrition  Disease  Accidents or trauma resulting in terminal injury

22. defining “permanent”  conditions which mimic death:  coma  hypoglycemia  hypothermia  bradycardia  hypoxia  electric shock  drug overdose  EEG, multimodality evoked potentials, etc. - helpful in determining “brain death”

23. the slippery new slope  death of the neo-cortex is being associated with the permanent loss of personhood  Information-theoretic death – “the destruction of information within a human brain (or any cognitive structure capable of constituting a person) to such an extent that recovery of the original person is theoretically impossible by any physical means”  WOW! We aren’t there if someone erases our hard drive!

24. “The Princess Bride”  Billy Crystal, playing Mad Max:  “Your friend is not dead. He is only mostly dead.”  Mad Max proceeded to resuscitate our hero into a weakened but fully brain-alive state, and he eventually recovered all bodily functions as well.  Role of EEG’s in death determination

25. walking the fine line…  prolonging life  allowing natural death  hastening death  terminal sedation  euthanasia  dysthanasia  assisted suicide

26. plumbing the depths  “How are you feeling within yourself?”  “How do you feel about what’s happening to you?”  Loss of function  Dependency  Crumbling previous relationships

27. Leonardo da Vinci “While I thought that I was learning how to live, I have been learning how to die.”

28. questions for the family  “Did we make the right decisions?”  “Did we give up too soon or hang on too long?”  “Was there anything else we should have done?”  “Did we seize every opportunity, take every action, for a loving, peaceful end?”

29. W. Somerset Maugham “Death is a very dull, dreary affair, and my advice to you is to have nothing whatsoever to do with it.”

30. “being a burden”  Families deny that their loved one is a burden  Often for them it is a sacred opportunity to be of service to a loved one who has served them in the past.  It becomes precious time together and brings families closer to one another.  The burden is rarely too heavy.  “it may be sad, but it is something we must do….”

31. caring for loved ones… the evolution  first, a satisfaction  then, a joy  after that, a privilege  and, finally, a sacred honor

32. Hmmmmm….

33. Allen Stewart Konigsberg 1935-????

34. Woody Allen: “I’m not afraid to die. I just don’t want to be there when it happens.”

35. Death - Wikipedia  Death is the permanent termination of the biological functions that sustain a living organism.  Phenomena which commonly bring about death include:  Old age  Predation  Malnutrition  Disease  Accidents or trauma resulting in terminal injury

36. nutrition  A topic that comes with cultural and ethical “baggage”  And yet – we must all die of SOMETHING… why not malnutrition  What ELSE will one die of, if not malnutrition?  sepsis  electrolyte imbalance  cardiac arrhythmia  blood loss/anemia  hypoxia

37. inability to eat “Dying of a progressive inability to eat is probably one of the most natural and physiologically gentle ways to expire… Hunger is rarely, if ever, a source of discomfort… Same is true of thirst… Hospice patients who are dehydrated are regularly asked if they are thirsty; most answer ‘no,’ but those who say ‘yes’ are consistently and fully relieved by having their mouth and throat moistened.” Ira Byock, “Dying Well,” p. 166

38. moral considerations  Nutrition is a decision – living will stipulations  patient autonomy – to eat or not eat is a right  Catholic Church supports nutritional efforts for patients in a persistent vegetative state  In a terminally-ill patient, morally and ethically, to withdraw or withhold nutrition is no different than any other test or treatment  A tough decision point to reach – takes time – a FULL CONSENSUS is needed – clear and frequent COMMUNICATION necessary – no rush

39. Pope Paul II, 2004  "The sick person in a vegetative state, awaiting recovery or a natural end, still has the right to basic health care (nutrition, hydration, cleanliness, warmth, etc.), and to the prevention of complications related to his confinement to bed... Death by starvation or dehydration is, in fact, the only possible outcome as a result of their withdrawal. In this sense it ends up becoming, if done knowingly and willingly, true and proper euthanasia by omission." -- Pope John Paul II, 2004

40. when it becomes futile…  "Medically assisted nutrition and hydration become morally optional when they cannot reasonably be expected to prolong life and when they would be excessively burdensome for the patient or would cause significant physical discomfort, for example, resulting from complications in the use of the means employed," said Haas, quoting the U.S. bishops' Directives. "For instance, as the patient draws close to inevitable death from an underlying progressive and fatal condition, certain measures to provide nutrition and hydration may become excessively burdensome and therefore not obligatory in light of their very limited ability to prolong life and provide comfort.” John Haas, Catholic Ethicist

41. When is it “futile?”  Declaration of “futile care” needs consensus:  patient (either in person or by proxy in living will)  family or significant others  medical care team  spiritual advisor  If all four are NOT in agreement, it is best to continue treatment or perform the test or procedure  Hospice/Palliative Care consultation can be helpful to resolve differences or misunderstandings

42. stopping eating and drinking  hunger pains – first day or two – not all patients  dry mouth – easily assuaged with swabs  ice chips and sips of water prolong dying process but may be necessary for caregivers’ comfort  “sleepier and sleepier”  2-5 days semi-comatose  2-5 days fully comatose – hearing last sense to lose  apnea, followed by cardiac arrest, or the other way

43. “thirst”  For the dying, this does not have the same connotation of “needing to drink substantial amounts of fluid”  Consistently relieved in the dying person by having their mouth and throat moistened  Ice chips and sips of fluids often culturally necessary, but delay natural death

44. transcendence vs. Terminal restlessness  Dying person appears to be losing connections with current reality  May be connecting to another dimension or absolute  Focusing on internal processes and concerns beyond their immediate world  Appears like confusion – we often call it visual or auditory hallucinations  Developing a new spiritual identity?

45. Elizabeth Kübler-Ross “For me, death is a graduation.”

46. Death - Wikipedia  Death is the permanent termination of the biological functions that sustain a living organism.  Phenomena which commonly bring about death include:  Old age  Predation  Malnutrition  Disease  Accidents or trauma resulting in terminal injury

48. Death - Wikipedia  Death is the permanent termination of the biological functions that sustain a living organism.  Phenomena which commonly bring about death include:  Old age  Predation  Malnutrition  Disease  Accidents or trauma resulting in terminal injury

49. Homostenosis… the closing off of life  Symptoms and Signs  Physical Findings  Three Stages of Actively Dying

50. Homostenosis  SYMPTOMS/ SIGNS:  debility – fatigue/asthenia  dysphagia - odonophagia  cachexia/anorexia - weight loss, wasting, decreased Body Mass Index (BMI)  anxiety, delirium and terminal restlessness  fluid shifts - localized edema, ascites, anasarca

51. Homostenosis  SYMPTOMS/SIGNS:  pain - physical, social, psychological and spiritual  sensorium - awake, semi-comatose, obtundation, comatose  nausea and vomiting - emesis, hematemesis  intestinal dysfunction – gastrostasis, constipation, malignant obstruction

52. Homostenosis  SYMPTOMS/SIGNS:  Near Death Awareness (“NDA”) - surreal auditory and visual hallucinations  renal shutdown - oliguria, incontinence, retention, bladder spasms  shock state - cardiovascular collapse, pulsus alternans  Respiratory failure - dyspnea, DOE, orthopnea, paroxysmal nocturnal dyspnea, wheezes, etc.

53. Homostenosis: Pre-mortem, Stage I  Stage I - Early active phase physical symptoms/signs:  dysphagia and lack of interest in fluids/food  progressive fatigue and weakness, unable to bear weight  emotional withdrawal  tachycardia or bradycardia  tachypnea or bradypnea  hypotension (mild)  drowsy to stuporous

54. Homostenosis: Pre-mortem, Stage II  Stage II - Active phase physical signs:  tachycardia > 120/min,  hypotension - BP <80 mmHg systolic, < 40 mmHg diastolic  early cyanosis, cool extremities,  oliguria < 500 ml/day, concentrated, tea color  profound weakness, usually bedbound - asthenia

55. Homostenosis: Pre-mortem, Stage II  Stage II - Active phase physical signs:  unable to eat or drink without choking: oro- pharyngeal dysfunction, usually moderate to severe enough to cause aspiration  hypothermia, hyperthermia  tachypnea, bradypnea, Cheyne-Stokes breathing, unable to clear secretions in hypopharynx/tracheo- bronchial areas (sonorous rhonchi = “death rattle”)

56. Homostenosis: Pre-mortem, Stage II  Stage II – Active Phase physical signs:  altered sensorium - very drowsy to semi-comatose  mandibular breathing - respirations with mandibular movement – “RMM”  delirium, terminal restlessness and “NDA”  pallor of nose and helix (top) of ear; flaccid pinna of ear (earlobe)

57. Physical Findings: flaccid pinna of ear (earlobe)

58. Homostenosis: Pre-mortem, Stage III  Stage III - Imminent Death – Actively Dying  findings of Stages I and II – PLUS:  increased RMM  cool mandible  Cheyne-Stokes breathing with prolongation of apneic phase  pulsus alternans

59. Homostenosis Pre-mortem, Stage III  Stage III – Actively dying  awake, very drowsy or comatose  patellar mottling  increased cyanosis and mottling – lips, fingers  drooping of the naso-labial fold  forehead bossing (relaxed forehead/face)

60. Physical Findings: patellar mottling

61. Homostenosis: Pre-mortem, Stage III  Stage III – Actively dying  hyperextension of the neck with tense sternocleidomastoid muscle  relaxation of the anal sphincter  absent bowel sounds  “Kennedy Terminal Ulcer”  loss of both radial pulses

62. Physical Findings: hyperextension of the neck with tense sternocleidomastoid muscle

63. Physical Findings: Kennedy Terminal Ulcer (1)

64. Physical Findings: Kennedy Terminal Ulcer (2)

65. Physical Findings: Kennedy Terminal Ulcer (3)

66. Symptoms Associated with Actively Dying (1) noisy and moist breathing 56 % restlessness/agitation 42% pain 42% urinary incontinence 32 % dyspnea 22%

67. Symptoms Associated with Actively Dying (2) urinary retention 22% nausea and vomiting 14 % sweating 14 % jerking, twitching, plucking 12 % confusion 8 %

68. T Morita, et al: A prospective study on the dying process in terminally ill cancer patients. Am J Hospice and Palliative Care. 1998;15:4:217-222. 1. clouding of consciousness  8% are awake in the last 6 hrs 2. death rattle  49% - present >24 hrs before death 3. respirations with mandibular movement  68% within 6 hrs of death 4. cyanosis of extremities  81% within 6 hours of death 5. pulselessness of the radial artery  87% within 6 hours of death

69. Death Rattle: 57 hours (+ 23) Respiratory Mandibular Movement: 7.6 hours (+ 2.5) Cyanosis: 5.1 hours (+ 1) Loss of radial pulse: 2.6 hours (+ 1) Median time until death following:

70. If all four are present, we are down to “hours”  death rattle  respiratory mandibular movement  cyanosis and/or mottling  loss of both radial pulses

71. needed transformation – an American cultural shift…  away from the denial of death as an essential part of life  away from dying as an inevitable emotional distress and barely avoidable physical suffering  toward an understanding of dying as a part of full, even healthy, living  toward accepting care for the dying as a valuable part of the life of the community

72. Americans with increased chance of dying in pain  non-English-speaking  Black or African-American  Hispanic  poor  elderly  female

73. As a caring community, we will say to the dying: “We will keep you warm and dry and clean. We will help you with pain and elimination. We will offer you food and drink, if you want it. We will be with you. We will bear witness to your sorrows, triumphs and disappointments. We will listen to the stories of your life, and we will remember the story of your passing.”

74. perseverance  Physical distress among the dying can always be alleviated  Medical care for the dying only fails when we give up  Pain is only “uncontrollable” until we control it  Hospice Team Approach – consult your Team – many heads and points of view solve tough problems

75. A life philosophy… “Don’t worry about the mule going blind, just load the wagon.”

76. thanks to…  Ira Byock, M.D., internist and hospice physician, Missoula, Montana, author of “Dying Well – Peace and Possibilities at the End of Life,” 1997, Past President of AAHPM  Wikipedia, to whom I gave $100  John A. Mulder, M.D. of Grand Rapids, MI and Alexander Peralta, Jr., M.D. of Duncanville, TX, for the backbone of “Homostenosis”  www.brainyquote.com www.brainyquote.com

78. Stages of Life  Growing up  Growing old  Growing on

79. Abraham Maslow, the fancy version:  Growing up – intrapersonal  Growing old – interpersonal  Growing on – transpersonal (or transcendent)

80. Suicide  Often a response to unbearable pain  Response to “nothing else can be done”  “Your case is hopeless… there’s nothing else we can do for you.”

81. Helen Keller “Protection in the long run is no safer than outright exposure. Life is either a daring adventure or nothing at all.”

82. Caregivers’ Burden  20% - family member had to quit work, delay their own medical care or make another major life change to provide care for dying person  29% - experienced loss of most, or all, of their major source of income  31% - reported loss of most or all family savings

83. Gerald May psychologist and theologian “Grief is neither a disorder nor a healing process; it is a sign of health itself, a whole and natural gesture of love. Nor must we see grief as a step towards something better. No matter how much it hurts – and it may be the greatest pain in life – grief can be an end in itself, a pure expression of love.”

84. Suffering  Physical pain from disease, plus  Emotional and psychological pain that comes with losing all a person has been or hoped and imagined they might someday be EQUALS TOTAL PAIN… THE LOSS OF PERSONHOOD  Loss of meaning and purpose in life  “He who has a why to live, can bear almost any how.” Friedrich Nietzsche