The Art & Science of Dying

The Art & Science of Dying David Lyman Sharp, M.D. Grand Rapids Medical Education Partners

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

Dr. Dave at the woodpile, 2004

Ben Casey, M.D. BIRTH LIFE DEATH INFINITY

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.

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

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

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.’”

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

cell death • hypoxia • acidosis • entropy • apoptosis • free radicals • toxic milieu • tumor growth

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”

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?”

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

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.Arsmoriendi, European J Pall Care, 1997: 4(5):164-168.

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.

fears associatedwith 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…”

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.”

Elizabeth Kübler-Ross • The Five Stages of Dying: • Denial • Anger • Bargaining • Depression • Acceptance

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”

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!

“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

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

plumbing the depths • “How are you feeling withinyourself?” • “How do you feel about what’s happening to you?” • Loss of function • Dependency • Crumbling previous relationships

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

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?”

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

“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….”

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

Hmmmmm….

Allen Stewart Konigsberg 1935-????

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

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

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

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

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

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

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

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

“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

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?

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

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

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

The Art & Science of Dying