1. Busyness, patient values,
targets, unnecessary
interventions, challenging
demographics and health
spending - where to from here?
Alastair Macdonald
Clinical Ethics Advisor
CCDHB

2. Jim - aged 72
• Drove his car into a tree.
• Minor stroke?
• Major trauma problems
• Limbs, pelvis, chest,
• Survival ?
• Lifetime smoker
• Limited to 100 m walking because of shortness of
breath

3. Jim - aged 72
• You talk to family
• What would Jim have wanted?
• No advance Care Plan
• No EPOA
• “He was a brave fighter”
• “He would have wanted everything possible done”
• What do you do?
A) Operate on all the fractures.
• Keep Jim on a ventilator in the ICU and hope that he will beat the
odds?
B) Keep him comfortable?

4. Themes
• History
• Demographics
• What is a good death?
• Frailty and decision making
• History of death and dying
• Death denial
• Values and Goals
• Communication
• Stewardship

5. “The transition between life and death
should be gentle in the winter of life”
Rudolph Matas

6. Achievementsand consequences
• increased life expectancy
• degenerative / chronic
diseases
• dependency

8. Dying for change?
But many people die
@ Hospital
“medicalised”
Most people want to die
@ home
family/whanau
conversing
comfortable/pain free
familiar surroundings
saying goodbye
prepared to die

10. Acute hospitaloccupancyper personby age

11. Postdischargemortality by age

12. 1) Unintentional weight
loss 5 kg
2) Exhaustion
3) Slowness
4) Decreased activity
5) Cognition decline (?)
6) Lack of resilience
Frailty
How often is frailty
specifically incorporated
into clinical decision
making?

13. Frailty models….

14. Need a new hip?

15. Need a new hip?
Frail +hip replacement
3x risk of dying

16. Need a new hip?
• You survive-just.
• Post-operative complications
• Long hospital stay
• Increased dependency
• Living in an assisted living
facility
• Worsening cognition?
• Were these possibilities included
I.C. process?
Frail +hip replacement
3x risk of dying

17. “Frailty may help
predict in-patient
morbidity and mortality
and target specialist
geriatric/ palliative
resources within the
hospital”
QJM: An International Journal of Medicine, 2015, 1–7
“Association of the clinical frailty scale with hospital outcomes”
S.J. Wallis, R.W.S. Biram and R. Romero-Ortuno

18. “Frailty may help predict
in-patient morbidity and
mortality and target specialist
geriatric/ palliative resources
within the hospital”
QJM: An International Journal of Medicine, 2015, 1–7
“Association of the clinical frailty scale with hospital outcomes”
S.J. Wallis, R.W.S. Biram and R. Romero-Ortuno

19. “Frailty may help predict
in-patient mortality and
target specialist geriatric
resources within the
hospital”
QJM: An International Journal of Medicine, 2015, 1–7
“Association of the clinical frailty scale with hospital outcomes”
S.J. Wallis, R.W.S. Biram and R. Romero-Ortuno

20. Cardiacsurveyincohort80+years
Internal Medicine Journal
Volume 46, Issue 6, pages 694-702, 3 JUN 2016 DOI: 10.1111/imj.13079
http://onlinelibrary.wiley.com/doi/10.1111/imj.13079/full#imj13079-fig-0002

21. Ars Moriendi• Follow the rules
• AND one’s soul would be guaranteed salvation from eternal damnation in the life to
come
• Two “infectious events”
• the infectious spread of Gutenberg’s printing press
• the mass distribution of Yersinia pestis, -“bubonic plague”
• In the wake of the Black Death
• a critical shortage of priests (who traditionally fulfilled a cultural role as the
guarantors of salvation through the administration of ‘last rites’
• pamphlets containing prayers and penances were easily producible and
distributable
• where they often lie waiting (in cupboards or at bedsides) in the case of an
unexpected fatal illness.

22. Black death c.1350

23. Ars Moriendi- the art of dying
c.1415
• Black Death (1350s)
• First Western guide to
death and dying
• A way of controlling
people?

24. Death-usedto be simpler
Angel
.
Ars Moriendi (the art of dying well) c. 1400
DeathThreatened soul
The devil
Dying and Death were
very much part of living

25. A short history of dying
• 19th century
• death @ home
• family members
caring for the dying
during the final
hours, days, weeks.

26. A short history of “dying”
20th century
• death more likely in hospital
• doctors and nurses cared for dying people
Early 21st century
• Many deaths occur in hospitals and rest
homes

27. The evolution of the word “death”
• 1970s – Parrots did not die, they became

28. The evolution of the word “death”
• sensitive parrots began to pine for

29. The evolution of the word “death”
• sensitive parrots began to pine for

30. • The public took their lead from parrots
• Folk did not “die” They “passed away”
• Patients began to lose their “battle with cancer”

31. A death denying culture?
• 1,500 respondents
• Adult medicine 50%
• 2/3 caring for EOL
• 1/3
- observed non-beneficial treatment given once a week to
patients likely to die within 12 months
- at least once a week, the provision of treatments that were
a) inconsistent with known patient wishes
b) delivery of treatments with little chance of significant
benefit.

32. • R.A.C.P. Survey
• Discussing death is easy to avoid
• < 20% of doctors know a patient’s EOL
wishes
• 80% said that training in
communication skills should be
mandatory
A death denying culture?

33. Little
experience
DEATH
Certain
Timing isn’t
Medical
failure?
Life’s natural
conclusion ?

34. Effective communication
34

35. 35

36. A death denying culture?
“Lead a public conversation to
promote awareness of good
end-of-life care and a focus on
quality of life rather than
prolonging life by any means”

37. Shared decision making
“The type and intensity of health care that a
patient receives is ultimately determined by
a conversation”

38. Shared decision making
“The type and intensity of health care that a
patient receives is ultimately determined by
a conversation”

40. Challenging demographics
• Older frailer cohort + increased dementia
• Most of deaths over age 85 will occur
• in residential aged care facilities
• after an extended period of care
• How will existing models of care manage?
• How will this be funded?

41. Palliative/geriatricworkforce
• Increased demand
• Lack of supply

42. Patient values, goals and the care they
receive
Patient
Whanau
Care/treatment
Alignment
Emotions
Values + Goals

43. Talking about death
• If death is not openly discussed
• How can you plan?
• How do you know?
• who will provide end of life care?
• where you will die?
• the likely outcome/s of the disease?

44. Patient values, goals and the care they
receive
Patient
Whanau
Doctor
Care/treatment
Alignment
Barriers
Discussions-often late
Lack of communication
Skills/training
ACP +/-
Emotions
Values + Goals

45. Patient values, goals and the care they
receive
Patient
Whanau
Doctor
Care/treatment
Alignment
Barriers
Discussions-often late
Lack of communication
Skills/training
ACP +/-
Emotions
Values + Goals

46. Patient values, goals and the care they
receive
Patient
Values + Goals
Doctor
Care/treatment
Alignment
Solution?
Barriers
Discussions-often late
Lack of communication
Skills/training
ACP +/-Palliative skills training?

47. Patient values, goals and the care they
receive
Patient
Values + Goals
Doctor
Care/treatment
Alignment
Solution?
Barriers
Discussions-often late
Lack of communication
Skills/training
ACP +/-Palliative skills training?

48. Challenging demographics
• Older frailer cohort + increased dementia
• Most of deaths over age 85 will occur
• in residential aged care facilities
• after an extended period of care
• How will existing models of care manage?
• How will this be funded?

49. Pre-Visit Letter
“This letter is designed to prepare patients
for a serious illness conversation with their
clinician. It includes topics for patients to
think about in advance, reinforces the
importance of the conversation, encourages
them to engage family members, and
reassures patients that talking about
the future will help them have more
control over their care.”

50. Pre-Visit Letter
“This letter is designed to prepare patients
for a serious illness conversation with their
clinician. It includes topics for patients to
think about in advance, reinforces the
importance of the conversation, encourages
them to engage family members, and
reassures patients that talking about
the future will help them have more
control over their care.”

53. What improvementswiththe use of this
decisionmakingtool?
Baseline documentation of patient
values and goals- 5%

54. What improvementswiththe use of this
decisionmakingtool?
2.5 hour training + use of
ACP module
Baseline documentation of patient values
and goals-5%

55. What improvementswiththe use of this
decisionmakingtool?
2.5 hour training + use of
ACP module
Baseline documentation of patient values
and goals
•5%
90%

56. What improvementswiththe use of this
decisionmakingtool?
2.5 hour training + use of
ACP module
Baseline documentation of patient values
and goals
•5%
A better basis
for sensitive
conversations
90%

57. benefits
• Patient understands illness
• Promotes decision-making preferences
• Prognosis clarified
• Understanding goals and fears
• Exploring views on trade-offs and impaired function
• Promotes family discussions about values and goals

58. Patient values, goals and the care they
receive
Patient
Values + Goals
Doctor
Care/treatment
Alignment
Solution?
Barriers
Discussions-often late
Lack of communication
Skills/training
ACP +/-Palliative skills training
Busyness /Burnout

59. Moral theories
• What is right / wrong?
• Utilitarianism
• maximising human welfare makes an action right.

61. The health care
“commons”
$$

62. Garrett Hardin
“The unmanaged commons would be
ruined by overgrazing; competitive
individualism would be helpless to
prevent social disaster”
“Individualism is cherished because it produces freedom, but the gift is conditional: The more the population exceeds the carrying capacity of the environment, the more
freedoms must be given up”

63. AMA statementonadoctor’srole
Stewardship/Tuaritanga
“Stewardship”
• avoiding / eliminating wasteful expenditure
• good decision-making / communication

64. GovernmentalStewardship/Tuaritanga
• Public welfare
• Health goals
• Funding
• Right infrastructure
• Social justice

65. Stewardship/Tuaritanga
• Moral concept
• More than fiscal / administrative responsibility
• Each society needs to define its values
• Wise investment in limited resources
• Sustainability

66. 38 studies
1.2 million patients
N.B.T. prevalence overall 33-
38%
• Blood tests
• NG Feeding
• Antibiotics
• Dialysis
• Ventilation
• Chemotherapy
• Radiotherapy
• Resuscitation
While a certain level
of N.B.T. is inevitable,
its extent, variation
and justification need
further scrutiny.

67. 38 studies
1.2 million patients
N.B.T. prevalence overall 33-
38%
• Blood tests
• NG Feeding
• Antibiotics
• Dialysis
• Ventilation
• Chemotherapy
• Radiotherapy
• Resuscitation
While a certain level
of N.B.T. is inevitable,
its extent, variation
and justification need
further scrutiny.

68. this requires uterineStewardship?

69. this requires uterineStewardship?
Healthy ageing-OK
What about a healthy
start?

70. this requires uterineStewardship?
Healthy ageing-OK
What about a healthy
start?
Dunedin study:
Aging process operates
from the beginning of life
driven by economic and
social factors

71. this requires uterineStewardship?
Not a good
start for our
KIDS !!

72. Shared decision making
“Although patient, doctor, surrogate, and system
factors all play a role, the type and intensity of health
care that a patient receives is ultimately determined by
a conversation”

73. Jim - aged 72
• Drove his car at 100 kilometres an hour into a tree.
• Minor stroke?
• Lifetime smoker
• Limited to 100 m walking because of shortness of
breath
• Major traumatic problems
• Limbs, pelvis, chest, intestines
• Survival ?

74. Jim - aged 72
• Talk to family-What would Jim have wanted?
• No advance Care Plan
• “He was a brave fighter”
• “He would have wanted everything possible done”
• What do you do?
• Operate on all the fractures.
• Keep Jim on a ventilator in the ICU and hope that he will
beat the odds?
• Keep him comfortable?

75. Jim aged 72
• Day 2 in the ICU
• Survives major surgery
• Then his son reports that he has found an advance directive written
by Jim three months ago.
“If I have a major illness or accident and there is little or no chance of
survival I just want comfort cares”
To my family
“Thanks for respecting my wishes, I love all of you – Goodbye!!”

77. Jim aged 72
• Day 2 in the ICU
• Survives major surgery
• Then his son reports that he has found an advance directive written
by Jim three months ago.
• “If I have a major illness or accident and there is little or no chance
of survival I just want comfort cares”
• To my family
• “Thanks for respecting my wishes, I love all of you – Goodbye!!”

78. Take home messages
We are not immortal!
We must communicate well
We have to care for “The Commons”

79. Surrogate Decision Making
• Advance directives-
• EPOA / living will.
• Executed while competent
• Will it cover actual current situation?
• Substituted judgment:
• acting according to what the individual, if competent, would do.
• families can be stressed and distracted and may have their own biases or competing interests
• Surrogates may not be able to predict what a patient would want in one third of the cases
• Patients may evolve to actively contribute to the decision making process
• Patients may have the ability to adapt to an unexpected disability
• Best interest standard:
• acting so as to promote maximally the good of the individual.

80. Considerlimitstosurrogateauthority:
• Unsubstantiated rationale for irreversible treatment decisions.
• Decisions are known to be inconsistent with the patient’s
preferences & values.
• Decisions in which a surrogate imposes his/her own values or
has a conflict of interest.
• 4. Decision that can be delayed (consider time-limited trials)
as a patient recovers decisional making capacity.

81. Some “terminal” thoughts..........
• You have a right to health care
• not a specific intervention
• Communication skills training
• strongly encouraged / mandatory
• more research on decision making in older age
group
• promote Advance Care Planning
• New houses should be “elder friendly”
• ACC cost savings?
• Encourage narratives about death and dying that are realistic-
theatre, film, books, blogs,
• Trials on specific surgical treatments !!
• Arthroscopic surgery for knee pain
• BMJ 2016;354:i3934 doi: 10.1136/bmj.i3934 (Published 20
July 2016)
• How much should we spend on research on medical
interventions (drugs)for Alzheimers?
• Beware of “compassionate” therapeutic options for some drugs

82. EOL Must haves
• Diagnosing dying
• Respect for patient
autonomy and supported
decision making
• Treatment and values align
• Respect best interests
• Managing symptoms
• Supporting carers and
family/whãnau.