Making End-of-Life Decisions

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Making End-of-Life Decisions

• A Review of Key Principles
• Jacques Mistrot M.D.

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End-of-Life Decisions

• Ordinary/Extraordinary Means
• Nutrition and Hydration
• Suffering/Pain Relief

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Change in Public Opinion

• Growing fear of a long, lingering death
• Emphasis on self-determination and autonomy
• Diminished willingness of society to accept the
  pain and suffering of dying as an acceptable fact
  of life
• Pleasure is good and should be sought!
• Pain is evil and must be avoided!

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Ordinary/Extraordinary Means

• We must use ordinary means of preserving our
  health and life
• We may refuse extraordinary means of preserving
  health and life

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Ordinary/Extraordinary Means

• Some procedures can benefit the patient - these
  can be pursued
• Some procedures go beyond what can be expected of
  a patient - burden - these can be omitted.

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Ordinary/Extraordinary Means

• The terms ordinary and extraordinary refer to
  moral facts, not medical facts.
• Medically, a procedure is ordinary when
• it is . . .
• - scientifically established
• - statistically successful
• - reasonably available

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Extraordinary Moral Means

• Pose excessive burdens for the patient (either
  physical/mental/economic)
• Offer little benefit (usefulness)
• This is a patient/proxy decision but one should
  use the judgment of medical professionals to aid
  the decision.

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• Benefits and Burdens
• The ratio of benefit to burden occasionally
  shifts during the course of a chronic or terminal
  illness
• Ordinary treatments may become extraordinary as
  the illness progresses
• Reassessment of treatment can be made when that
  occurs

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Excessive Burdens

• Pain (physical/mental) as extraordinary means
• 1500s amputation (before anesthesia)
• 1600s excessive shame (woman treated by a male
  physician)
• Today prolonged treatment for incurable cancer

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Excessive Burdens

• Risky or experimental procedures
• Painful or other very unpleasant side effects
• Interference with important activities during
  remaining lifetime
• Refusal based on certain moral principles (ie JW
  blood transfusions/transplantation from
  deceased donor)
• Psychological repugnance (amputation, deformity)
• (Beware of quality of life arguments)

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No Benefit

• Suppose a man is being burned to death
• He has water at hand, but only enough to quench
  part of the fire not put it out
• There is no obligation to use the water, even
  though it would extend his life slightly

• Cardinal Juan De Lugo (1600s)

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Medical Example Benefit/Burden

• Patient with cancer of the lung
• Surgical Radiation treatment recurrence
• Debilitated, trouble breathing, O2 _at_ home
• Prognosis several weeks of life
• Offered chemotherapy and respirator support if
  needed may add a few months to his life but
  without curing him
• Chemotherapy little benefit extraordinary
  treatment - may be refused
• Respirator may temporarily benefit the patient
  but is a burden because it requires
  hospitalization/discomfort/expense
  extraordinary treatment - may be refused

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Excessive Costs

• Expense has long been recognized as a valid
  consideration in evaluating means
• Expensive hospitalizations, medications,
  procedures
• Obviated somewhat by our wealth and health care
  system/insurance
• Not required to bankrupt ourselves or families

Ethical and Religious Directives for Catholic
Health Care Services (November, 1994) no.56-57
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Role of Practical Wisdom

• These are judgment calls that the patient and
  family (in conjunction with health care
  professionals) must make together
• We can cause a patient unnecessary suffering at
  the end of life by over-zealous treatments

CCC 2278
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Role of Practical Wisdom

• What is true for one person
• May not be true for another
• Example a long and difficult program of
  treatment for cancer
• a) A young woman with several children
• b) An old woman whose social obligations are
  fulfilled

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Nutrition and Hydration
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Nutrition and Hydration

• Care versus Treatment
• Care routine attention to a patient
• Treatment can cure disease or return to
  health

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Care

• Care -
• Bathing
• Changing the bedclothes
• Keeping the patient warm/dry
• Turning the patient to avoid bedsores
• Pain relief
• Providing food and water

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Presumption in Favor

• Food and water are normal care and obligatory as
  long as they provide benefit
• But there are exceptions - burden
• Not being absorbed persistent infections
• Repeated aspirations suctioning of throat
• Agitation and pulling of the tube requiring
  restraint/constant supervision

Ethical and Religious Directives for Catholic
Health Care Services (November, 1994) no.58
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The Patientwith (Persistent) Vegetative
StateVS
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VS(Medical)

• Unresponsive
• Not a Coma (unconscious/no arousal)
• No awareness of self/surroundings
• Usually severe cortical brain damage
  (communication, understanding, willful actions,
  pain perception)
• Sleep and wake cycles preserved
• These patients are not dying!
• Some of these patients are in a severe locked-in
  condition!

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John Paul IIMarch 20, 2004Life Sustaining
Treatments and the Vegetative State

• A man, even if seriously ill, will always be a
  man and never a vegetable or animal.
• The right of the sick person, even one in the VS,
  to basic health care.
• The moral obligation to provide food and water to
  persons in the VS by even tube feeding.
• The need to resist making a persons life
  contingent on its quality.
• The principle of solidarity to support the
  families of a love one stricken with this
  terrible condition.

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CDFAugust 1, 2007

• The administration of food and water even by
  artificial means is, in principle, an ordinary
  and proportionate means of preserving life. It
  is therefore obligatory to the extent to which,
  and for as long as, it is shown to accomplish its
  proper finality (benefit), which is the hydration
  and nourishment of the patient. In this way
  suffering and death by starvation and dehydration
  are prevented.

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VSWhy Is Removal Wrong?

• Patient is not dying!
• Death is not caused by the underlying disease
  that led to the inability of the patient to drink
  or eat.
• Death is caused by starvation or dehydration.

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Jan Grzebski19 year coma

• Railway worker - fell into a coma after he was
  hit by a train in 1988.
• Doctors gave him only two or three years to live
  after the accident.
• He remembers everything that was going on around
  him He talks about it and remembers the weddings
  of our children.

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• Vegetative State
• 23 year old female, MVA, TBI - July 2005
• 5 months later in vegetative state
• Functional MRI performed

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Vegetative State

• Imagine playing a game of tennis - fMRI
• Imagine walking through all of the rooms in your
  house - fMRI

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VS/MCS

• Wide variety and lack of consistency of these
  semi or unconscious states
• Not in immediate danger of death
• Long term status is unknown in many of them
• Better medical technology will help answer some
  of these unknowns
• But no matter what science tells us
• these are human persons and deserve normal care

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Pain/Suffering
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Catholic Understandingof Suffering

• Pain, suffering and death result of original
  sin
• God embraces suffering caused by our sins in
  Christs passion and death
• Result of Christs passion and death is victory
  over the sin and death imparted to us
• John Paul II, Salvifici Doloris (1984)

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Christian Understandingof Suffering

• By Christs suffering for our Redemption, He has
  raised all human suffering to the level of
  Redemption
• We are united to Christ by our baptism and can
  thus unite our suffering to His for the salvation
  of souls
• Christ encourages us to take up our cross
  (including suffering) and follow Him
• John Paul II, Salvifici Doloris (1984)

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Pain/Suffering

• Catholic understanding
• Not required to suffer
• Pain relief allowed to significant degree

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The Use of Pain Killers

• Doctors have a moral obligation to alleviate
  pain.
• Pain is debilitating in itself
• Fear, anxiety, loss of sleep, etc.
• These conditions effect the spiritual goods of
  the patient - friendship, communication, prayer

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Foreseeing versus Intending

• Doctors may relieve a patient of pain even if
  it shortens life.
• To foresee that life will be shortened is not to
  intentionally kill.

• CCC 2279

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Double Effect

• Principle of double effect
• intend the good effect
• tolerate the bad effect
• One may aggressively alleviate pain even if it
  indirectly shorten life.
• One may not directly kill to alleviate pain this
  is euthanasia.

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Pain Control

• Important advances in pain control
• Cancer Patients
• Greater physician willingness to treat pain
• Earlier use of narcotic medications
• Addiction usually not a concern in terminal
  patients with no history of drug abuse

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Pain Control- Faith -

• Studies show that faith is a key factor in
  managing pain and suffering
• Those with faith are generally more at
• peace during the dying process and
• generally require less pain medication

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Palliative Sedation

• Most pain can be alleviated, but . . .
• not all!
• Palliative sedation strong pain medication puts
  the patient into an semi-conscious state

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• Palliative Sedation
• vs.
• Terminal Sedation (Euthanasia)
• Palliative relief of severe pain
• confusion tolerated!
• Terminal relief of severe pain
• death intended!

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A Conscious Death

• Consciousness should be suppressed only for a
  very serious reason (severe pain)
• Time for prayer, reception of Sacraments
• Pain and suffering have salvific value
• But no one is obliged to suffer pain

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A Conscious Death Important Needs Fulfilled

• Heal broken relationships
• Allows patient to experience the caring provided
  by loved ones
• Benefits the family to care for a patient who can
  gratefully respond
• -Turn ones attention toward God . . .
• Sacramental forgiveness

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A Conscious Death

• At the time of death, the person who has loved
  Christ throughout a whole lifetime should meet
  the Bridegroom in a condition that reflects the
  dignity of a rational creature.

Congregation for the Doctrine of the
Faith Declaration on Euthanasia (May 1980)
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Summary
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Ordinary/Extraordinary Means

• One is obligatory the other optional
• These refer to moral means (not medical)
• Reasons for forgoing treatments
• Excessive burdens (physical or mental pain)
• Little benefit (risky or unlikely to help)
• Too expensive (self or family)
• Role of practical wisdom in each case

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Nutrition and Hydration

• Food and water are ordinary care
• Presumption in favor of their use
• But there are exceptions (extraordinary)
• VS patients should receive food and water because
  life is a basic good
• VS is not a consistent medical condition
• Removal of food and water causes death

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The Use of Pain Killers

• We are not obliged to suffer
• Relieving pain is a moral obligation
• Foreseeing death is not intending death
• Aggressive pain-relief may shorten life, but this
  is permitted by double effect
• Consciousness may be suppressed (side effect of
  analgesia) for a very serious reason - palliative
  sedation

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Church Teaching on Suffering

• Christ encourages us to take up our cross
  (including suffering) and follow him
• We are not obliged to suffer during the dying
  process and can receive relief through medication
  to the point of confused consciousness but

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Church Teaching on Suffering

• we are encouraged not to do so until we have
  had an opportunity to receive sacramental
  forgiveness and to have made peace with our
  fellow man

Pius XII ADDRESS of February 27, 1957,
145-147.
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• Even pain and suffering have meaning and value
  when they are experienced in close connection
  with love received and given
• John Paul II
• Evangelium Vitae n.97

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Thank You

• jmistrot_at_nc.rr.com
• www.catholic-bioethics-nc.org

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Advance Directives

• What is valid in my State?
• Many different state laws
• Typically a statement of wishes
• Signed and witnessed by two others (18)
• Key is to Express Your Intentions
• -Terri Schiavo case

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Benefits of ADs

• An expression of your wishes can aid your family
  and other decision-makers give comfort
• Fulfills a legal requirement of health care
  facilities (though patients are not obliged to
  have an advanced directive)

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Problems with ADs

• They are inflexible written in stone
• Cannot anticipate course of future illnesses
• Can give moral misdirection (our duty to ignore)
• Can lead to conflicts of interpretation
• Destroy old copies
• Some standard ADs are morally problematic

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Health Care Proxies

• Recommendation of the NCBC
• Designate a Health Care Proxy
• A trusted person who knows you
• Someone who shares your values
• Positive avoids conflict over who decides
• Negative frustration among those excluded

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Health Care Proxies

• Some Important Notes
• The proxy must outlive the patient (you can
  designate and additional alternative agent)
• A Health Care Proxy is not necessarily the same
  as a Durable Power of Attorney
• Makes sure others know your views

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Serving as Surrogate

• How do I decide what to do?
• Substituted Judgment Make the decision the
  patient would make if able
• Best Interests Make the decision that is in the
  best interest of the patient
• These sometimes conflict
• - Accident patient with AD no ventilator but
  suppose it is a temporary measure and would save
  his life

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Serving as Surrogate

• My moral life is implicated in yours when I serve
  as your proxy
• I cannot engage in actions that contradict my
  faith or morals, e.g., perform euthanasia
• Be sure you can fulfill an AD before accepting
• Problem of cooperation with evil exists

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Proxies and Advance Directives

• Key is to Express Your Intentions
• To a proxy or through an advance directive
• NCBC favors proxies over directives
• Do not sign a defective directive
• Substituted judgment versus best interests

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• Whether we are dealing with children in the
  womb, old people, accident victims, the
  physically or mentally ill, we are always dealing
  with our fellow human beings whose credentials of
  nobility are to be found on the very first page
  of the Bible God created man in his own image
• Paul VI, 1974

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Thank You