Advance Care Planning ACP

1
Advance Care Planning (ACP)
Goal Setting

• Associate Professor Cynthia Goh
• Head, Department of Palliative Medicine
• National Cancer Centre Singapore
• Centre Director, Lien Centre for Palliative Care
• Duke-National University of Singapore Graduate
  Medical School

Intensive Course in Basic Palliative Care for
Medical Teachers - 7 Nov 2009
2
In order to plan aheadwe need to know what is
likely to happen to the patient
3
Three kinds of disease trajectories toward the
end of life
4
Disease Trajectory for Cancer
Short period of evident decline
5
Disease Trajectory for Organ Failure
Long-term limitations with intermittent serious
episodes
6
Disease Trajectory for Frailty Dementia
Prolonged dwindling
7
(No Transcript)
8
We think that people with heart disease drop dead
suddenly
9
Prognostication in heart disease

• New York Heart Association Classification
• - based on functional status
• Sudden deaths from arrhythmias decrease with
  functional class
• NYHA class II 50-80
• NYHA class III 30-50
• NYHA class IV lt30 (these tend to die
• of pump
  failure)

10
Prognostication Heart Failure

• Both patients clinicians tend to underestimate
  mortality in Heart Failure
• For men aged 65-74
• 5-yr mortality after onset of HF 50-59
• 5-yr mortality for women 45

11
Prognostication Heart Failure

• During stable periods
• NYHA class
• Class I mortality 5-10 per year
• Class IV mortality 40-50 per year
• 1 yr mortality from 1st admission for HF in
  elderly patient with co-morbidities gt60 -
  worse than most cancers

12
Disease Trajectory for Organ Failure
Long-term limitations with intermittent serious
episodes
13
We think that kidney replacement therapy will
stop people from dying of kidney failure
14
Disease Trajectory for Organ Failure
Long-term limitations with intermittent serious
episodes
15
Background Kidney Failure

• Annual mortality in patients on long-term
• dialysis is 20-25
• 15-25 die from dialysis discontinuation
• (2nd leading cause of death after
• cardiovascular disease)
• Symptom burden very high
• Quality of dying questionable

16
Background

• 6-51 have advance directives (AD)
• Few choose Do-Not-Resuscitate (DNR)
• despite extremely poor CPR outcomes
• Few know they have the option of
• withdrawal from dialysis
• Dialysis patients often do not view
• themselves as terminally ill
• Many believe they can be kept alive
• indefinitely by dialysis

17
Background

• Issues on death dying are often avoided
• until late in the illness
• Patients may no longer be competent to
• make their own decisions
• Hence, the need for advance care planning
• (Davidson Torgunrud, Am Journal of kidney
  Dis 2007)

18
What is Advance Care Planning?
19
(No Transcript)
20
Advance Care Planning is NOT

• Just an Advance Medical Directive
• Done by doctors
• A legal document

21
Definitions

• Advance Care Planning (ACP)
• - is a process of communication among patients,
  families healthcare providers about appropriate
  future medical care, if when the patient is
  unable to make decisions
• - Not a one off event

22
Definitions

• Advance Medical Directive (AMD)
• - may be a component of ACP
• - in Singapore, this is a legal form signed by a
  person stating that should he become terminally
  ill unable to state his wishes, he does not
  want to be kept alive by extraordinary means
• - A one-off event
• - But it can be revoked at any time

23
Differences between ACP AMD

• Advance Care
• Planning
• Advance
• Medical
• 
  Directive
  
  

24
Advance Care Planning is a process

• It involves
• Understanding the situation
• Reflection on life choices
• Communication
• Discussion between patient,
• family or health care proxy,
• healthcare staff

25
Advanced Care Planning is a process

• The purpose is to
• allow the patient to think about the issues
• clarify patient preferences
• develop individualized plans for care near the
  end of life
• identify a surrogate decision maker, if desired

26
Advanced Care Planning is a process

• Outcomes include
• allowing the patient to achieve a sense of
  control
• decreasing the burden on others

27
Hope is central to the process of ACP

• Hope
• helps patients determine future
• goals of care
• provides insight into the perceived
• benefits of ACP
• empowers patients to engage in
• end-of-life discussions
• Davison Simpson, BMJ (2006) 333886-890

28
Understanding the patients values

• Advance Care Planning is about understanding a
  patients life values
• Mr S is an 85-yr old successful businessman, with
  recurrent metastatic Nasopharyngeal Carcinoma
  (NPC) who failed radiotherapy 2 lines of
  chemotherapy had radical neck surgery with a
  tracheostomy now he wants to try experimental
  chemotherapy.
• He wants to be treated and resuscitated at all
  costs because his life mantra is to fight till I
  conquer it or die fighting.
• Dying with dignity means fighting till the end.
  

29
Identifying goals burdens of treatment and care

• Different people have different
• Goals of Care
• - Comfort at all costs
• - Life at all costs
• - Balance between both
• Burden of Care
• - Treatment comes with a price
• - What price am I willing to pay?

30
Study on treatment preferences in seriously ill
patients

• 226 pts with life-limiting illnesses (cancer,
  heart failure and COPD)
• Questionnaire on treatment preferences with low
  adverse outcomes vs high adverse outcomes
• Burden of treatment (prolonged hospital stay,
  extensive investigations, invasive procedures)

31
Study on treatment preferences in seriously ill
patients

• Low burden adverse outcomes
• 98.7 opted for therapy
• High burden adverse outcomes
• - functional impairment
• 25.6 opted for therapy
• - cognitive impairment -
• 11.2 opted for therapy
• Fried et al. N Eng J Med Apr 2002

32
Patients preferences change with disease
progression functional deterioration

• Mrs P, 85 yr old, is homebound but needed minimal
  assistance with activities of daily living.
• She has end-stage COPD with underlying Type 2
  respiratory failure.
• She wants everything to be done for her,
  including intubation and CPR should she
  deteriorate.
• She wanted to live on to see her favourite
  grand-daughter graduate from university.

33
Patients preferences change with disease
progression/functional deterioration

• However, Mrs P suffered an infective exacerbation
  of illness, was intubated had a prolonged ICU
  stay of 3 weeks. She was discharged after 2
  months in hospital, now she was largely
  bedbound required supplemental oxygen.
• She then opted for Home Hospice Care passed
  away peacefully at home after another 2 months.

34
The process of making an Advance Care Plan
35
The Advance Care Planning Process

• Patient participation
• Decision making defining goals of care
• Documentation
• Timing
• Who is involved
• Quality improvement

36
Patient Participation

• Is patient able to participate? (not if
  depressed or cognitively impaired)
• Is he interested to participate?
• Does he perceive any benefits in
• participation?
• Who does the patient want to engage
• doctor, dialysis nurse, MSW?

37
Decision making defining goals

• What do the patient family understand about
  current health status, treatment, treatment
  options, prognosis?
• Who is the decision maker? (Patient? Family? Dr?)
  This may change with time
• What are their expectations of the treatment?
• What are the patients life values?

38
Documentation

• Patient preferences clearly stated
• Choices made known to those involved
• in decision making
• Decision makers must understand
• follow patient choices
• Documentation easily visible and
• transferable across health care settings
• Decision not to participate in ACP is
• also recorded

39
Preferred Place (Priorities) of Care Tool

• A example of the Advance Care Planning tool
  developed implemented in the UK as part of the
  NHS End of Life Care Programme 2007
• A patient-held document recording the process of
  discussion between an individual key persons
  involved in providing care across different care
  settings, regularly reviewed updated

40
Possible ACP Decisions

• If I become mentally incompetent, I would like
  to stop dialysis.
• If I become bedridden unable to sit in a
  wheelchair, I would like to stop dialysis.
• If I am reaching the end of my life, I would like
  to be cared for at home/in hospital/hospice.

41
Possible ACP Decisions

• I would like to give dialysis a try, but if it
  is too burdensome, I would like to have the
  option to stop.
• The next time I have a worsening of my COPD, I do
  not want to have ICU care intubation, but just
  treatment to make me comfortable
• In the event of my deterioration, I would like
  reasonable measures to prolong life, but if I
  continue to decline despite these, I would like
  to be made comfortable be cared for at home.

42
Timing

• Traditionally endof-life care discussions
• are avoided till death is approaching
• Difficult to recognize when dying starts
• Cognitive impairment not uncommon
• Hence important to have ACP discussions
• early in the illness when comprehension
• decision making capacity are still
• preserved

43
Timing

• At the very least, ACP should start when
  prognosis is expected to be lt1 year
• Ask the question Would you be surprised if
  this patient dies within this year?
• The time of discussing initiation of dialysis is
  also a good time to mention options of no
  dialysis or withdrawal when desired

44
Quality Improvement

• Ongoing updating evaluation
• Ongoing education of teams
• Empowerment of health professionals
• to feel comfortable in bringing up the
• topic dealing with emotions

45
What are some of our patients Goals?

• Best possible pain symptom relief
• Spend as much time as possible in the place of
  ones choice, doing things of ones choice
• Reconciliation with family
• Complete unfinished business
• To suffer as little as possible
• To die without pain

46
What are some of our patients Goals?

• Best possible pain symptom relief
• This means impeccable assessment
• Using the right drug, the right route, the right
  dose, the right timing
• Monitoring effect at the right time interval
• Ensuring compliance
• Reviewing for new symptoms
• Knowing our limitations calling for help

47
What are some of our patients Goals?

• Spending as much time as possible in the place of
  ones choice, doing the things of ones choice
• This means not using invasive procedures that
  will keep the patient in hospital
• Keeping care simple
• Appropriate interventions
• pinning of fractures / nerve blocks

48
What are some of our patients Goals?

• Reconciliation with family
• Complete unfinished business
• This means allowing the patient to know that her
  time is limited
• Knowing the name of the disease that will kill
  her may not be necessary, but knowing that the
  time is short is

49
When maximizing comfort is the goal of care.

• Stop unnecessary medications
• Keep tubes to a minimum
• Stop intrusive monitoring that lead to worry or
  interventions detrimental to the patient
• Take your eyes off the medical
• Think about what is enjoyable to a normal person!

50
Right Siting of Care

• From the point of view of health service
  provision
• Where should the patient be cared for that is the
  most appropriate for that patient?
• Taking into account
• 1) The patients wishes
• 2) The familys wishes ability to take care of
  the patient
• 3) What is affordable sustainable for that
  community

51
Right Siting of Care
This leads on to Planning for the right services
for that community What does the patient
want? What do the families want? What can this
community afford?
52
Right Siting of Care
The Singapore model Acute Hospitals Step-down
care community hospitals hospices nursing
homes Home care
53
Where does the Patient want to be cared for?

• At home
• In hospital
• In a nursing home
• At a temple
• At the place of their choice, provided

54
Is there adequate care provided?

• Who is there to give the care?
• Is there space?
• What sort of medical or nursing back-up is
  available?
• Can they get medications?

55
What are the Patients medical /nursing needs?

• Is the patient
• fully ambulant?
• Ambulant when supervised?
• Chair-bound?
• Bed-bound?
• Does the patient need 1-person or 2-person
  transfer?
• Is the patient self-caring?
• Is the patient continent?

56
What are the Patients medical/nursing needs?

• Are there special nursing needs?
• Naso-gastric tube?
• Urinary catheter?
• Stoma?
• Nephrostomy tubes?
• Percutaneous biliary drainage?
• Cope loops for ascites drainage?
• Fistulae?
• Fungating wound?

57
What are the Patients medical/nursing needs?

• Is the patient capable of taking his own
  medications?
• Can the family supervise the medications the
  patient needs to take?
• Are there special medications?
• Subcutaneous infusions?
• Epidural infusions?
• Intrathecal infusions?

58
What are the Patients medical/nursing needs?

• Are special procedures needed?
• Blood transfusions
• Pleural taps
• Abdominocentesis
• IV antibiotics
• How will the patient have these done?

59
Who is there to give the care?

• Spouse?
• Or does an elderly spouse need care?
• Adult children?
• Siblings?
• Friends?
• Is hiring a domestic helper feasible?

60
Is there space?

• Is there space to put a hospital bed?
• Is the bathroom accessible?
• Are ramps / grip bars needed?
• Will a urinal or commode help?
• Is oxygen needed?

61
What services are there in the community?

• Nursing support
• Hospice home care
• Medical
• Nursing
• Medical Social Worker
• Family physician
• Private nurses
• Private nursing aides

62
Conclusions

• What is a good death is different for everyone
• Having options to spend ones last days in the
  place of ones choice is a privilege

63
Conclusions

• Culturally appropriate Palliative Care Services
  needs to be provided where the patient wants to
  be
• at home
• in hospital
• at hospice
• at nursing home
• at the temple

64
Thank you