Decisions at the End of Life

1
Decisions at the End of Life
Professor Julian Savulescu Uehiro Chair in
Applied Ethics The University of Oxford
2
Outline

• rational decisions about the limiting of
  life-prolonging technology
• Concept of life not worth living
• Do-not-resuscitate orders
• Refusal of treatment
• Advance Directives (Living Wills)

3
Options at the End of Life

• John has a skin cancer which has spread to his
  lungs
• lungs are failing
• could live several weeks if he were placed on a
  breathing machine
• on morphine for pain relief.
• John wants to die now. There are 5 options

4
Options at the End of Life

• 1. place John on a ventilator.
• sanctity-of-life view.
• 2. not place John on a ventilator.
• withholding life-prolonging treatment (passive
  euthanasia).
• 3. place John on a ventilator until his condition
  deteriorates further, and then stop ventilation.
  
• withdrawing life-prolonging medical treatment
  (passive euthanasia).
• 4. provide John with the means for him to kill
  himself
• assisted suicide.
• 5. kill John now with a lethal injection
• active euthanasia.

5
The Issue

• Prolong life (1) or
• Not Prolong life (2 and 3)
• Kill (4 and 5)

6
Active and Passive Euthanasia

• Statement of the current position
• distinction between killing and letting die.
• Quotation from a prominent policy guideline.
• Conceptual analysis (constructing a distinction)

7
Active and Passive Euthanasia

• Example suffering, therefore decide to withhold
  further life-prolonging treatment.
• But the patient may suffer more than if killed.
• Example of neonates. Reductio

8
Rachels First Argument

• P1 We should do what minimizes suffering,
  ceteris paribus. (shared premise)
• P2 Letting die is associated with more suffering
  than killing in some cases.
• C In those cases, we should kill rather than let
  die.

9
Next Strategy The Opposition

• Rachels then attacks the opposing argument
  incomplete logic of allowing to die.
• Invalid argument
• Decisions based on irrelevant contingencies on
  the presence of a remediable intestinal
  obstruction, rather than on the basis of the Down
  syndrome.
• Conceptual analysis - distinctions (in this case
  in reverse, showing that the alleged distinction
  has no moral significance)

10
Rachels Second Argument

• P1 Infants with Down syndrome and intestinal
  obstruction die.
• P2 The existence of intestinal obstruction is
  irrelevant to whether they should die.
• C Infants with Down syndrome die because they
  have Down syndrome.
• Dilemma Some infants with Down syndrome do not
  die (that is, those without intestinal
  obstructions)
• There is a contradiction either Down syndrome
  makes life not worth living or it does not.

11
Psychological Explanation of Irrational Practice

• Reasons for these irrational practices
• belief that there is a moral difference between
  killing and allowing to die.
• But is there?
• Principle derivation the only principle that
  would justify intuitions about these cases is the
  acts-omissions distinction.
• Conceptual analysis is there a relevant
  distinction between acts and omissions?

12
Thought Experiment Smith and Jones

• 2 cases matched for all relevant features
  motivation, outcome, character, etc.
• This example controls for all variables which
  might influence intuitions
• Only difference kill or allow to die.

13
Result

• Consistency treat like cases alike. If Smith
  and Jones are equivalent, then active and passive
  euthanasia are equivalent.
• What matters is the intention, the decision and
  the outcome, not the means.

14
Modus Tollens

• Another way of looking at the example of Smith
  and Jones is as modus tollens
• P Acts have a different moral significance to
  omissions.
• Q The case of Smith should be evaluated
  differently to the case of Jones.
• If P, then Q.
• However, intuitions suggest not-Q.
• Therefore, not P.

15
Psychological Explanation

• Psychological explanation or diagnosis of why
  intuitions suggest a difference between killing
  and allowing to die
• most cases of killing are worse than letting die
  street murder vs medical allowing to die.
• Psychological explanations are important to
  explain why dilemmas arise.

16
Objections

• Conceptual analysis
• allowing as an act, from the moral perspective.
• Example insult someone by not shaking his hand.
• Implications of passive euthanasia judged that
  death is no worse than existence. Changes moral
  evaluation of killing that person.

17
Essential points

• Isolation of the distinction killing and
  allowing to die. Conceptual analysis
• Incomplete logic of allowing to die. Invalid
  argument
• Decisions based on irrelevant contingencies on
  the presence of a remediable intestinal
  obstruction, rather than on the basis of the Down
  syndrome. Conceptual analysis
• Influence of everyday intuitions. Why do we
  think that? Construction of pure case to
  illustrate that there is no difference.
  Consistency

18
Overall Argument

• P1. There is no morally relevant difference
  between acts and omissions (the bulk of the
  argument seeks to establish this)
• C Active euthanasia (killing) is not morally
  different from passive euthanasia (letting die)
• Of course, this conclusion does not follow from
  P1 without something like the suppressed premise
• P2 Killing is an act letting die is an omission.

19
Hidden Premise

• But even with this as P2, the argument is not
  valid unless something much stronger is true
• P2 Killing is an act letting die is an omission
  and these are the only relevant moral features
  about killing and letting die.
• This premise is far from true.
• It is a large leap from the holding that there
  is no intrinsic difference between acts and
  omissions to the claim that active euthanasia is
  morally equivalent to passive euthanasia.

20
Other Consequences

• Rachels brushes aside side effects, saying that
  they support active euthanasia (less suffering)
  but many would claim that passive euthanasia is
  morally less reprehensible because less likely to
  be associated with slippery slopes.
• Second major problem
• the premise that passive euthanasia results in
  more suffering
• The palliative care argument

21
What is life-prolonging medical treatment?

• Any medical intervention which causes or may
  cause a person to live longer
• cardiopulmonary resuscitation (CPR)
• antibiotics
• blood
• artificial feeding and hydration
• mechanical ventilation
• chest physiotherapy
• surgery

22
Principles

• best interests principle
• respect for autonomy
• justice

23
Best Interests and the End of Life

• When is it in a persons best interests not to
  have life prolonging medical treatment?
• When is life no longer worth living?
• When is better to be dead than alive?

24
When Life Is No Longer Worth Living

• Permanent unconsciousness
• Permanent near unconsciousness
• Severe cognitive impairment
• Severe functional impairment

25
A Life Not Worth Living - Bland

• In 1989, 21-year-old Anthony Bland was seriously
  hurt when part of the football stadium at
  Hillsborough collapsed.
• permanently unconscious
• after three years, doctors asked the court they
  could stop Bland's life-support (artificial
  feeding)

26
Bland

• Law Lords authorised removal of his feeding tube
  which resulted in his death.
• Artificial feeding was judged to be a form of
  medical treatment.
• Further medical treatment was judged to be not in
  his interests because
• Bland had no interests because he was unconscious

27
Principle

• Western law and medical ethics allows (requires?)
  doctors to stop life-prolonging medical treatment
  when patient is permanently unconscious

28
Life Not Worth Living

• Case of R
• Born in 1972 with malformation of the brain
• cerebral palsy
• severe epilepsy
• cognitively and neurologically at the level of a
  newborn infant

29
Life Not Worth Living

• R case
• spastic and unable to sit or walk.
• blind and probably deaf.
• severe constipation
• syringe feeding.
• he appeared to experience pleasure when cuddled.

30
Life Not Worth Living

• Rs health was deteriorating
• recurrent chest infections
• constipation
• bleeding from an ulcerated oesophagus
• epileptic fits
• dehydration and undernutrition (5stone)

31
DNR Order

• Do not resuscitate order made (DNR order)
• parents agreed

32
Life Not Worth Living

• Social workers at the day care centre
• DNR order is irrational and unlawful in that
  it permits medical treatment to be withheld on
  the basis of a patients quality of life.
• Case went to court

33
Life Not Worth Living

• The Hospital Trust issued a summons seeking a
  declaration that it was legal to withhold
• resuscitation and ventilation
• antibiotics

34
British Medical Association Guidelines

• Make do-not-resuscitate (DNR) decision
• Where the patients condition indicates that
  effective CPR is unlikely to be successful
  (futility)
• Where DNR is not in accord with the recorded,
  sustained wishes of the patient who is mentally
  competent (refusal).
• Where successful CPR is likely to be followed by
  a length and quality of life which would not be
  acceptable to the patient (quality of lif).

35
Life Not Worth Living

• Court said CPR would be futile
• chances of successful CPR in a nursing home would
  be virtually nil.
• a risk of fracturing Rs ribs.
• certain pain and distress
• risk of further brain damage.

36
Life Not Worth Living

• Court also authorised withholding antibiotics
• this was a judgement based on quality of life as
  antibiotics would work, especially if feeding
  tube inserted.
• Judge referred to intolerable suffering

37
Principle

• Life prolonging medical treatment can be withheld
  if there is
• medical disorder
• severe epilepsy.
• deteriorating health.
• severe functional impairment
• profound learning disability
• no formal means of communication
• locomotor impairment
• sensory impairment.
• inability to execute normal bodily functions

38
Mr L

• NZ Mr L 59 year old male with severe
  Guillain-Barre syndrome
• total paralysis, inability to communicate, deaf
• Judge Thomas concluded that ventilatory support
  could be withdrawn if
• a reasonable body of medical opinion would
  conclude that there is no reasonable possibility
  of recovery.
• there is no therapeutic or medical benefit to be
  gained by treatment, and withdrawal of treatment
  accords with good medical practice.
• the patients wife and ethics committee concur
  with the decision.

39
Principle

• Life prolonging medical treatment can be withheld
  if there is
• severe functional impairment alone without
  cognitive impairment

40
Valuing a Life

• Permanent unconsciousness
• Permanent near unconsciousness
• Severe cognitive impairment
• Severe functional impairment

41
Do-Not-Resuscitate Orders

• Do-not-resuscitate order
• an order given by medical staff that
  resuscitation would be inappropriate

42
Mr B

• 78 yo Christian of Indian background
• past history of high blood pressure, diabetes,
  and strokes
• severe dementia, paralysis, inability to
  communicate, blindness, incontinence, sores and
  inability to swallow.
• totally dependent on family for care.

43
Mr B

• general deterioration in health, dehydration,
  aspiration pneumonia
• family claimed he could understand them in their
  native tongue and responded by opening his eyes
  and nodding.

44
Mr B

• Mr B was treated with intravenous antibiotics,
  fluids and oxygen.
• DNR order was made.
• Mr Bs family discovered the DNR order and were
  very angry.

45
Mr B

• Nursing staff were opposed to performing
  resuscitation on quality of life grounds. They
  argued that further life-prolonging treatment was
  not in Mr Bs interests.
• Mr Bs family disagreed.

46
Mr B

• Medical staff were opposed to a CPR on grounds of
  that it would be futile.

47
Principles

• The British Medical Association (1999) state a
  DNR decision is appropriate when
• CPR is unlikely to be successful (futile).
• CPR is not in accord with the recorded, sustained
  wishes of the patient who is mentally competent
  (refusal)
• Resuscitation is likely to be followed by a
  length and quality of life which would not be in
  the best interests of the patient to sustain
  (quality of life)

48
Mr B

• Clinical Ethics Committee
• attempted resuscitation would harm the
• virtually no chance of restoring independent
  cardiorespiratory function and would cause pain.
  
• Mr B died at home

49
Principle

• CPR can be withheld in the best interests of the
  patient on grounds of futility
• even though his family disagreed that this was in
  his best interests.

50
Family

• The focus of Western medical ethics is the best
  interests of the patient
• family members can neither refuse nor demand such
  treatment.
• There is no legal requirement in England to seek
  the consent of families to any medical decision
• Doctors are legally required to act in the best
  interests of an incompetent patient, regardless
  of what relatives want.

51
Family

• The views of families may yield important
  information about the patient and her
  circumstances, what she wanted and what is best
  for her.
• Patients often want their familys views
  considered.

52
Autonomy and End of Life

• Patients must give permission for any medical
  treatment

53
Valid Consent

• competent person
• informed
• acting freely

54
Refusal of treatment

• Competent adult patients have the right to refuse
  any medical treatment, even life saving medical
  treatment

55
Refusal must be valid

• Competent person
• Informed of the consequences and alternatives
• Acting freely

56
Example Jehovahs Witnesses and Blood

• a denomination of Christianity.
• A JW will refuse to accept blood transfusion even
  if it is clear that a transfusion would save her
  life.

57
Religious Rejection of Blood

• JWs view the Bible as the inspired Word of God
• should all be interpreted literally.
• "Every moving animal that is alive may serve as
  food for you. As in the case of green
  vegetation, I do give it all to you. Only flesh
  with its soul - its blood - you must not eat."
  Genesis 93-4.

58
Autonomy and the Incompetent Person

• Mrs K
• 87 yo female
• large stroke
• right-sided paralysis
• inability to speak
• virtually unconscious
• decision was made to withhold artificial feeding
• family in agreement

59
Mrs K

• condition improved
• conscious
• responded to simple commands
• recognised people
• however, incompetent and did not respond
  meaningfully to complex questions or commands.
• nursing home and gastrostomy feeding
• increasing concern about withholding food

60
Family

• Daughter
• reported that Mrs K stated prior to a hip
  operation 4 years ago
• that if she was ever left in a state in which she
  was not able to care for herself, talk, live by
  herself, she would not want to be kept alive.

61
Family

• Family conflict and had not seen her mother for
  some time.
• Reported several attempted suicide attempts by
  mother

62
GP

• I contacted GP
• stated that she was not happy with her
  pre-existing level of function
• she had said that if her condition deteriorated,
  she would not want to be kept alive.
• Staff now in agreement
• Her past values and wishes were interpreted as an
  advance refusal of artificial feeding

63
Guardianship Hearing

• Senior Guardian appointed herself and Mrs Ks
  daughter as joint guardians
• They authorised withholding of food and fluid
• Mrs K died soon after

64
Principle Advance Directives

• An advance directive or living will
• a statement made by people when they are
  competent
• about how they want to be treated
• when they are ill or disabled in the future
• and are incompetent then to decide this for
  themselves.

65
Types of advance directives

• Instruction directive
• a statement expressing a request for or a refusal
  of treatment in certain future circumstances
• General values/preferences statement
• a statement of a persons general values or
  preferences relevant to medical treatment
• Proxy directive
• a person authorises another specific person to
  make decisions for him or her when incompetent

66
Legal Issues

• common law establishes that informed, competent
  adults (over 18) have the right to refuse any
  treatment, even life-sustaining treatment
• to provide treatment to a patient who has
  competently refused it constitutes battery in law

67
Legal Issues

• refusal made in advance may have the same legal
  force as a contemporaneous refusal, if it is
• clearly established
• applicable in the circumstances. eg Jehovahs
  Witnesses
• individual must have envisaged the type of
  situation which has subsequently arisen and have
  accurately foreseen the consequences)

68
Clearly established choices evidential
considerations

• any informed and well considered statement made
  by a competent patient for how he or she wants to
  be treated when incompetent constitutes an AD
• can be made on standard forms, or informally in
  narrative style
• can be witnessed or unwitnessed

69
Clearly Established

• unambiguous oral statements carry the same legal
  force as written statements
• proxies may provide evidence of past oral
  statements that can themselves be legally binding
  
• should be updated periodically.
• old advance directives may be valid if there is
  evidence that a patient has not changed his views.

70
Dilemma Facing Clinicians

• Not respecting a valid AD battery
• Following an invalid AD negligence

71
Evaluating the Validity of Advance Directives

• Is the directive consistent with what the person
  valued?
• Is there evidence that the directive was
  completed by this particular person?
• Was the person competent at the time of
  completing it?
• Was the person fully informed of the
  consequences? Was he or she aware of the risks
  and benefits?

72
Evaluating Validity

• Does the directive apply to this particular set
  of circumstances?
• What was the patients intention at the time of
  completing the directive?
• Has technology changed since the time the
  directive was completed to call into question the
  directives applicability?
• Is there evidence that the person has changed his
  or her mind?
• Was the person's choice free from coercion?

73
Medical Judgement Mrs H

• 70 yo lady with severe sepsis of the perineum.
• She will die without surgical excision and
  colostomy.
• With treatment, there is a 50-75 chance of
  survival.
• Incompetent
• husband adamant that she has refused all
  operations

74
Surgeon

• I have seen this sort of thing a hundred times
  before. People refuse surgery but when they are
  staring death in the face, they change their
  mind. We have no evidence that she actually
  refused treatment anyway. We have to operate.

75
Surgeon

• optimistically, a 50-75 chance of survival with
  a colostomy, ITU, and plastics revision
• husband had a vested interest in her not
  surviving because he had to care for her
• surgery was in her interests

76
Anaesthetist

• believed that anaesthetic was in her best
  interests
• would not anaesthetise a patient refusing
  treatment
• concerned that restraint would be necessary

77
Husband

• adamant that she wants to die with dignity
• not be mucked about with.
• difficulty understanding information
• diverging in conversation

78
Local Doctor (GP)

• Mrs H was well in the past
• had refused to see a doctor over the 10 years
• health deteriorating over the last two years
• increasingly dependent, short of breath over last
  few months
• refused to be taken to the doctor

79
GP

• 3 days prior to admission agreed to GP visit
• Limited examination blisters on her lower leg
• something seriously wrong, but she refused
  investigations
• competent at that time
• She did not specifically refuse life-saving
  treatment

80
Admission

• next day incompetent and confused, but still
  refusing admission
• admitted with NIDDM, hyperosmolar coma,
  hypotensive and hypoxic
• extensive sepsis of the perineum

81
GP Hospital Visit

• GP said that her objection to medical treatment
  was more out of fear and anxiety about doctors
• she would consent to a life-saving operation but
  not to a colostomy
• he had had personal experience with the
  difficulties invovled in colostomy (father)

82
Mrs H

• clearly incompetent (unable to retain information
  and weigh risks and benefits, drowsy, mumbling
  incomprehensibly)
• Would you have an operation if it was necessary
  to save your life?
• She replied, Yes.
• I want to live.

83
Overall

• Was treatment in her interests?
• not clear whether operation was in her best
  interests.
• best to operate trial of aggressive treatment,
• but withdraw if no improvement.

84
Overall

• Had Mrs H refused treatment in these
  circumstances?
• Mrs H had refused medical treatment in the past
• limits of this refusal and basis were not clear,
• informedness about the consequences of her
  refusal
• she would not wish multiple procedures or to be
  left with a grossly diminished quality of life.

85
Medical Consultant Husband

• agreed with a trial of full, aggressive treatment
  but stated that she wanted to die with dignity

86
Important points

• Incompetent
• legal duty to do what is in her best interests
  (negligence otherwise)
• unless she has expressed a valid refusal of this
  procedure.

87
Important Points

• Refusal of treatment
• providing treatment in presence of a valid
  refusal, even past refusal, is battery
• validity and applicability of refusal not clear
  in the circumstances.
• Process of clinical ethics consultation
  facilitated resolution

88
Conclusion

• Technology affords us choices.
• Change natural course
• Human beings are rational.
• They are capable of making decisions about what
  they should do on the basis of reasons,
  especially moral reasons.

89
End of Life

• In the area of end of life decision in the West,
  the principles are
• concern to promote human well-being
• respect for personal autonomy
• justice in distributing scarce resources.

90
End of Life

• western medical ethics focuses on promoting the
  best interests
• Sometimes it is better for a person not to be
  treated, even if that treatment is necessary to
  save life.
• It also presumes that patients also have the
  right to make their own decisions about whether
  to accept treatment.
• Most importantly, humans must exercise their
  rational capacities to make choices about how to
  use and restrict technology on the basis of
  reasons

91
Reference

• Hope T, Savulescu J, Hendrick J. Medical Ethics
  and Law. Churchill Livingstone 2003.
• See reference list in chapter on end of life