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Advance Care Directives and End of Life Care Planning
Presented by Dr Nicola Cornally
Centre for Gerontology and Rehabilitation/School of Nursing and Midwifery, University College Cork
Ireland
Team/contributions to presentation: Prof. William Molloy, Dr. Ciara McGlade, Dr. Edel Daly.
Today’s Master Class
10.00-10.10 Introductions- group/lecturer/facilitators
10.15-10.45
Advance care directives and advance care planning
Legal status
Purpose
Advantages
Key challenges in advance care planning
10.45-11.15 Introduction to the ‘Let Me Decide’ Programme (Research
& Documents)
11.15-11.30 Completing a ‘Personal Statement’
11.30-11.45 Coffee
11.45-12.30 Case scenarios: completing an advance care directive and
EOLDCP
12.30-12.50 ‘Lived Experience’ of advance care planning – Staff of St.
Luke’s
12.50-1.00 Top tips and wrap up
Learning Outcomes
• Describe the rationale for conducting Advance Care Planning
• Identify the steps involved in completing an Advance Care Directive
• Critically discuss the key challenges in decision making for end of life
• Recognise and complete a ‘viable’ personal statement
• Understand the process of systematically implementing a programme such as ‘Let Me Decide’ in LTC
Advance Care Planning & Advance Care Directives.........
What do they really mean? • Advance Care Planning (ACP)
– Voluntary process – Discussion and review with person with capacity – To help them understand their condition and how it may affect them in the future – To establish a person’s needs, preferences and goals of care – Educate and Consider treatment choices for future care
• Advance Care Directive (ACD) – Output of Advance Care Planning – Statement of wishes (by a person with capacity) about future care, if specific circumstances
arise and the person no longer has capacity to make care decisions (e.g. Dementia) – ACD decisions only apply if the person has lost capacity – Legally binding in some countries
The key differences between ACD/ACP/CP
• Care planning, either end of life or otherwise can include persons with or without capacity (usually completed/led by care team to guide clinical practice based on needs assessment and sometimes preference gained from a patient’s previously completed ACP/ACD)
• Advance care planning must include persons with capacity (the word advance makes the distinction)
• Advance care directive is a formalised outcome of advance care planning (again only completed with a person with capacity)
Capacity
• To understand the information relevant to the decision
• To retain that information
• To use or weigh that information as part of the process of making the decision
• To communicate his or her decision (whether by talking, using sign language or any other means)
Legal Issues
Current Irish Law for competent people
There is NO absolute right to health care
BUT
There IS an absolute right for a competent person to refuse medical treatment, even if it leads to
death.
Law Reform Commission Report (2008) ‘Bioethics: Advance Care Directives’
• “Ideally decisions regarding CPR should be made and discussed in advance as part of overall care planning.”
• “An advance decision regarding CPR should only be made after the appropriate consultation and consideration of all relevant aspects of the patient’s condition ... which includes the patient’s known or ascertainable wishes.”
• “For those who have taken the trouble to plan what should happen to them in the future (which the Commission would, of course, encourage) it is possible that the person may decide to deal with a range of issues, including their property and health care, in a single document.”
Are ACDs enforceable in Ireland?
• “If created by a competent informed person an ACD would be upheld as valid”
(Madden D. Medicine Ethics & Law, 2002)
• “Advance statement, properly made and containing no directives that were themselves unlawful, would be acceptable to Irish Law” (Mills, S. Clinical Practice & the Law, 2007)
What if…..
What if you had no ACD and you’d lost capacity to decide for yourself e.g. advanced dementia…..
Who would decide for you?
Historical Cases
• There may be disagreement on what is best for the patient from family and healthcare professional’s perspectives especially when the patients wishes are not known
(Karen Ann Quinlan, Terri Schiavo, Nancy Cruzan)
Karen Ann Quinlan Irreversible brain damage
PVS
Family and Hospital wanted ventilation D/C
Morris County prosecutors threatened homicide charges (based on the right to life)
New Jersey supreme court judge denied request
Appealed to the Supreme court and request granted
Lived for a further decade in PVS with artificial feeding
Historical Cases
• Nancy Cruzan Case went to the United States Supreme Court ruling on her right to die in
1990 after a battle between her parents and the Missouri Department of Health
Congress passed the self-determination act in the states in 1991
Month after the ruling: the right to die society received more than 300,000 requests for ACD forms.
• Terri Schiavo Husband campaigned for right to die and removal of artificial feeding –
opposed by parents and federal government
14 appeals – supreme court ruling
Treatment preferences
• These issues are common among the five countries included in this study (Hong Kong, Ireland, Israel, Italy and the USA).
• However, EOL treatment preferences and the use of life-sustaining treatments are also influenced by culture and traditions within each of these countries.
• Little was known about preferences among nurses in different traditions and cultures about EOL treatment.
• A descriptive, comparative design
• A questionnaire developed by Molloy et al (1991) was distributed to a convenience sample of 1089 nurses in the five countries (Ire n=186, Italy n =261, US n=344, Israel n=141, Hong Kong n=157).
• The questionnaire contained three case vignettes describing a patient scenario; each vignette indicated a different level of information regarding the patient’s wishes.
• The three case vignettes where the clinical circumstances were identical: Mr Murphy a patient with Alzheimer’s disease, Mr Murphy as the participant’s father, and Mr Murphy as the participant.
PATIENT CASE SCENARIO: MR MURPHY
– 84yrs old
– Living in a nursing home
– Has Alzheimer’s Disease for 7yrs
– Unable to recognise children, sometimes recognises wife
– Needs assistance with mobilising
– Incontinent
Mr Murphy is having episodes of hematemesis and is hypotensive. Unless treated he will most likely die. His family are not available and there is no advance directive. What would you do?
Choices
Palliative
•leave him in the nursing home and keep him comfortable
•Only measures that enhance comfort or minimize pain; e.g. morphine
•No X-Rays, blood tests or antibiotics, unless they are given to improve comfort
•Do not transfer to hospital unless absolutely necessary
Limited
•Transfer to hospital for transfusion but no surgery or endoscopy
•IV therapy may be appropriate
•X-Ray examination and blood tests may be appropriate
•No invasive procedures; do not transfer to ICU
Surgical
•Blood transfusion, endoscopy and surgery if necessary
•Do not admit to ICU
•Do not ventilate (except during and after surgery)
Intensive
•Blood transfusions, endoscopy, surgery, intensive care, ventilator and everything a modern hospital has to offer to maintain life if necessary.
Palliative / Limited Care Option
40 39 66
40
72
84 71
77
87
57
68
82
53
62
69
0
50
100
150
200
250
300
350
400
450
Patient Parent Self
CASE
HONGKONG
ITALY
IRELAND
USA
ISRAEL
%
Yes, I would perform CPR
0
10
20
30
40
50
60
70
80
90
PatientParent
Self
85
32
16
65
41
22
70
54
32
61
45
24
55
35
20
USA
IRELAND
ISRAEL
ITALY
HONGKONG
Yes, I would provide artificial feeding
0
10
20
30
40
50
60
70
80
PatientParent
Self
74
40
19
65
50
26
79 75
59
66
48
25
77
65
34
USA
IRELAND
ISRAEL
ITALY
HONGKONG
CPR and Tube feeding for case scenario given
0
10
20
30
40
50
60
70
80
90
100
Doctor Nurse AHP Student
Pe
rce
nta
ge
CPR
Tube feeding
CPR and Tube feeding for themselves
0
10
20
30
40
50
60
70
80
90
100
Doctor Nurse AHP Student
Pe
rce
nta
ge
CPR
Tube feeding
KEY POINTS • Interesting differences in preferences among nurses
when presented with the case of Mr Murphy as patient, parent and self.
• Irish nurses opted for ‘palliative care’ more often than their counterparts in other countries.
• The ‘Intensive’ treatment option was most popular choice for nurses in the USA and Israel
• Major influences on participant choices were Lack of knowledge of patient wishes Duty of care. • Fear of legal action was not a major influencing
factor, contrary to public perception.
The Problems with ACDs
• How can you be sure the person understood their decisions?
• How can you be sure the person wasn’t coerced?
• How can you be sure the person was competent when making the ACD?
• What if the choices made are “inappropriate”?
The Problems with ACDs
• If vague, how do you interpret them
– “heroic measures”, “reasonable recovery”....
• Projecting oneself into the future is tricky
• What if you change your mind?
• Some feel ACDs send the message to elderly people that they should refuse treatment
• “Slippery Slope to Euthanasia”
What ACDs ARE NOT
• A means to limit care
• A means to get patient to forego treatment
• An alternative to appropriate/reasonable treatment
• The means for addressing issues of futility or the perceived high costs of end-of-life care
When should I do Advance Care Planning?
• As the patient is coming through the door?
– Most older people prefer if they’ve gotten to know the person first
– Advertise it early
– Allow time for person to “settle in”
• When the person still has capacity
The Process
Information giving is a critical element of the ACP process
Communication is very important
Building trusting relationships with the health care team
“I actually changed dialysis days because of a doctor who did rounds refused to talk with me about end-of-life issues. When I tried to ask him questions,
he would not take me seriously and he was sort of like, oh there you silly girl, you don’t have to think about that yet. And I found that quite distressing. It
was as if he could not bring himself to talk about those issues.”
The Process
• Discuss the issues relevant to the decisions
• Their views on their life as it is
• Their views on what is important to them
• Their views on treatment in their current health, as they are and what would change those views
• Assess their understanding of their current health, diagnosis, prognosis (on their terms) e.g. do they understand their COPD
Documentation
• Document the discussion, views expressed etc.
• If ACD completed: – signed (by whom?),
– witnessed (by whom?),
– filed (where?)
• Want to be able to know at a glance if there’s an ACP
• Want to be able to access it easily and quickly
• Want to be able to show it’s made in a valid way…
Core steps
• Provide information
• Establish desire to complete ACD
• Educate
• Establish decision making capacity
• Document, sign, date
• Store
• Review
‘Let Me Decide’
Pilot Study-Ireland
• Prof Willie Molloy • Dr. Ciara McGlade • Dr. Edel Daly • Dr. Nicola Cornally
Funded by the Irish Hospice Foundation/Atlantic Philanthropies
‘Let Me Decide’ Programme
The systematic implementation of both an
Advance Care Planning using the
‘Let Me Decide’ Advance Care Directive
and
a General Palliative Care Educational Programme
In long-term care institutions in Ireland
Aim: To evaluate the systematic implementation of the LMD-ACP programme in three long-term care sites Design: Two year before/after pilot study. Mixed method evaluation (Qualitative and Quantitative measures) Sample: Three Nursing Homes in Ireland (n residents=290) Intervention: Let Me Decide advance care planning and palliative care education programme Outcomes: Staff knowledge, learning needs, barriers to ACP, up take of ACP/ACD among residents, compliance with ACD/ACP, acute hospital utilisation and quality of death and dying (from family and staff perspective), impact on care environment
Why palliative care component?
• Evidence that ACD increase the demand for palliative care
• Evidence of unmet palliative care needs of residents in long-term care
• Evidence of unmet palliative care educational needs of staff in long-term care
Baseline Data on Nursing Homes
• Profile of home questionnaire
• Baseline residents’ demographics
• Staff Palliative Care educational needs
• Attitudes and Barriers to implementation of Advance Care Planning
• Chart review of all deaths in the previous year
• Quality of Dying and Death (QODD) survey - to assess the death from the perspective of the relative of deceased resident
Let Me Decide - ACD training
• Introduction to Advance Care Directives
• Legal Issues
• Ethical Issues
• Practical Issues
• Measuring Capacity
• Completing an ACD
Let Me Decide – Palliative Care Education
• General palliative care education
• Aimed at LTC staff
– First 3 sessions for nurses & Healthcare assistants
– Last 3 sessions for nurses
• Five core topics
– Informed by Staff Learning Needs Questionnaire
(to build on knowledge & experience of staff)
– Informed also by the Palliative Care Competency Framework
Let Me Decide-Irishified
–Different legislation here in relation to both ACDs and medical decision-making for people lacking capacity
– Irish edition of ‘Let Me Decide’ book (2011)
– LMD form altered for Irish LTC population
–Additional form developed for care planning for residents lacking capacity
–Policy development for institutions
Let Me Decide Advance Care Directive 1. Summary of Patient Treatment Choices
IF I had an Unacceptable/Irreversible condition of health/ functioning and if I became seriously ill I would choose:
Life-Threatening Illness
Cardiac Arrest
Feeding
Palliative Care Limited Care Surgical Care
Intensive Care
No CPR
CPR
Basic
Tube
Let Me Decide Advance Care Directive
2. Personal Statement
I would consider an UNACCEPTABLE condition to be any condition WHERE:_______________
______________________________________
______________________________________
______________________________________
I would agree to the following:
Donating my organs Cremation:
after my death: Yes☐ No☐ Yes☐ No☐
Advance Care Planning and Advance Care Directive Up-Take
• Following implementation, over 50% of residents had some form of end-of-life care plan in place (advance care directives; advance care plans; or end-of-life care plans for those with diminished capacity).
Nursing Home ACDs/EOL Care Plans completed (%)
1. 120 Beds N = 68/120 (57%)
2. 97 Beds N = 58/97 (60%)
3. 79 Beds N = 39/79 (50%)
Compliance with Wishes
• Despite the high prevalence of cognitive impairment, at least 10% of residents had capacity to complete their own advance care directive.
• Of 70 residents who died during the study period, 84% had an end-of-life care plan in place (12% of these were advance care directives).
• Compliance rates: Of those who died, wishes were fully adhered to in 95% of cases.
Health Care Utilisation
Data from largest university teaching hospital in Ireland, only Level 1 Trauma centre in the country showed; Increase of 10.34% NH transfers and 5.76% NH in-patient bed days for the same period
42% reduction of acute hospital bed days from Nursing Home residents observed
Staff survey
Before (n=87) • 50% had no palliative training • 40% would feel confident about
discussing end of life issues with residents and family
• Palliative care learning need as indicated by over 90%:
Pharmacological Management of Pain and opioids & Understanding the emotional needs of the dying patient • Barriers to ACP were lack of
knowledge among general population and staff and lack of sufficient time to educate resident/family
After (n=93)
• 82% found our palliative training ‘very useful’
• 90% believed that every competent person should become more involved in their decision making
• Pain management remains a ‘very important’ learning need for over 70%
• 65% felt confident educating and completed ACP/ACDs with residents and family
Qualitative Evaluation of the programme
• Focus groups were conducted with 15 nurse managers/DONs and staff that were involved in implementing the programme.
• Length of focus groups varied between 51mins-72mins
• Participants asked to describe ‘Let Me Decide’ in one word
‘we are just negligent to look after people without finding out what their wishes are and I think
we have no right to look after people without asking them- give them the opportunity’.
Demonstrating the significance of implementing ACP/ACDs
“It requires engagement on a deeper level particularly
with family members and it means getting involved in
discussions that heretofore may have been avoided or deferred so as not to upset
people.”
LMD enhanced communication and normalised death – one resident even
thanked staff for giving them the dignity to decide.
“I think it has made end of life care in general smarter since we started it. I think we have examined critically our end of life
care”
These observation by staff have been confirmed by quantitative data
“I have received very positive feedback from relatives after their
loved one has passed away and some of the feedback directly
relates to the level of preparedness of the family and next of kin as a
result of LMD. Being prepared and understanding what to expect at this
difficult time has helped family members deal with the loss of their
loved one.”
Benefits of the programme have extended to reducing family distress and creating a sense of preparedness at end of life
“we have had a reduction in the number of transfers to acute hospital at the end of
life, the staff are happier that they are not seeing dying
residents transferred out of their home to a busy A/E
Department. There has been an increase in staff morale”
LMD has enhanced practice
Key Challenges
Challenges
Establishing capacity Persons lacking
capacity
Capacity assessment
Borderline capacity
Enactment of ACP Ensuring compliance
GP involvement
Legal aspects
Indecision Gaining consensus
Misperceptions of
purpose
Not for everybody
Challenges to Implementation
Releasing staff for training
Reluctance of staff to take ownership of ACP role
Lack of adequate time to deliver ACP Difficulties educating residents
with cognitive impairment
Failure of other healthcare professionals to recognise completed
ACP forms
Releasing staff for training
Reluctance of staff to take ownership of ACP role
Lack of adequate time to deliver ACP Difficulties educating residents with
cognitive impairment
Failure of other healthcare professionals to recognise completed ACP forms
Considerable challenge for management
Practical and financial
implications
Prompted the ongoing development of e-learning modules
Blended learning format to deliver training and
assess competence
Challenges to Implementation
Releasing staff for training
Reluctance of staff to take ownership of ACP role
Lack of adequate time to deliver ACP
Difficulties educating residents with cognitive impairment
Failure of other healthcare professionals to recognise completed ACP forms
ACP is part of the management role
Lack of confidence and experience in delivering ACP
Fear of misperception of purpose by residents
“I approached a resident one day about it and he said to me no I don’t want to have anything to do with that now at all he said
because I know well what is going on here. They just don’t
want the likes of me turning up in hospital he said”
”Live ACP demonstrations” were delivered in front of small groups
of nursing staff
Survey of staff attitudes revealed diverse training needs and
diverse levels of confidence among staff
The palliative care education was further developed based on the
staff survey results
Standardisation of training and accreditation to promote
confidence
Challenges to Implementation
Releasing staff for training
Reluctance of staff to take ownership of ACP role
Lack of adequate time to deliver ACP Difficulties educating residents
with cognitive impairment
Failure of other healthcare professionals to recognise completed ACP forms
Lengthy discussions of a sensitive nature
Can be a very slow process for residents lacking capacity
“And then you would have family members that don’t talk and one
member wants this and other members want that so you have to bring them all together in a circle
where the patient isn’t compos mentis…and you have to make sure that the whole lot of them are on the same wavelength, otherwise
you could forget about it”
Need for protected time for staff to engage residents and families in the
ACP process in an unrushed manner
Appointment of ACP facilitator, preferably a staff member with
specialist skills and training
Acceptance that ACP is not for everyone
“I think that once staff began to see the benefits of their hard work delivering ACP to residents and
families, they felt that it was worth putting in the effort, even in the
face of time constraints”
Challenges to Implementation
“You need quite a few meetings actually, you have to introduce it,
introduce the literature and then try and get the relatives and give them
the literature and explain it all to them and then go back and well of course you have to do the SMMSE
first you know so it starts there really. I suppose it does need that amount of consideration as it is a
very big decision”.
Releasing staff for training
Reluctance of staff to take ownership of ACP role
Lack of adequate time to deliver ACP
Difficulties educating residents with cognitive impairment
Failure of other healthcare professionals to recognise completed ACP forms
-Limited ability to concentrate during ACP
education process
-Borderline capacity
”I think there should be a patient’s page for those lacking full capacity to
complete an ACD, but who are clear on some wishes”
-Delivering educational material in ‘bite-sized
chunks’
-Larger print on educational aids
-Summarised versions of key material
-Modifications to the SIACAD assessment
Challenges to Implementation
Releasing staff for training
Reluctance of staff to take ownership of ACP role
Lack of adequate time to deliver ACP
Difficulties educating residents with cognitive impairment
Failure of other healthcare professionals to recognise
completed ACP forms
Out of hours doctors, ambulance staff, and
hospital ED staff
“That has happened to one of my residents as well
that I sent up with an Advance Care Directive
and it was ignored”
Hospitalisation of residents despite wishes to
be kept in the LTC facility
ED staff requesting completion of hospital
order form
Such barriers will not be overcome until ACDs are more normalised in our
society and are protected by supporting legislation
e.g. Assisted Decision-Making Bill
Education for all
healthcare professionals and particularly those in
the emergency services is needed
Challenges to Implementation
The Personal Statement
Personal Statement
• Describes what you would consider intolerable.
• In this irreversible and intolerable condition you would not want life prolonging treatment
4 D’s: Simple Principles
• Don’t name diseases
• Don’t confuse ‘And’ and ‘OR’
• Don’t use time limits
• Describe everyday functions
Don’t Name Diseases
• When you describe this intolerable condition don’t say……
If I had Cancer
OR
If I had Alzheimer's Disease
Don’t Confuse ‘And’ & ‘OR’
Use with caution
Example:
‘I would consider my condition intolerable if I can’t wash and feed and dress myself’
OR
‘If I can’t wash or dress or feed myself’
Don’t Use Time Limits
• ‘If I am terminally ill or have less than six months to live’
Describe every day functions
• ‘If the time ever comes and I am unable to dress myself, or recognise family and friends and if I am so confused that I lose control over my bladder and bowel and there is no hope of recovery, then I would consider that to be an intolerable condition’
Now consider level of care you would want in this condition and what you would not want to prolong your life
Examples:
Good • I would consider a condition unacceptable
if I am permanently confined to bed and have to spend most of my time in hospital and had no hope of recovery. I would consider a condition unacceptable if I am unable to wash and dress myself, and unable to speak, or quadriplegic. I would not consider paraplegia ‘unacceptable’. Do everything to avoid hospitalization. I would want to die at home (or Nursing Home) if at all possible. I would accept temporary restraints for my safety.
Bad • I would consider a stroke an intolerable
condition. Only use life prolonging treatment if there is a reasonable chance of recovery. I would consider it unacceptable if I could not wash or feed myself. I would never accept restraint. I never want to be placed in a Nursing Home. If I have less than 12 months to live Do Not Attempt to resuscitate me.
Key points
• Clear
• Easily Interpretable
• Informed
Case Studies
Things to consider in decision making process
• Valid ACD
• ‘Best interest’ –likely outcomes, risks of treatment vs. non-treatment, patients rights
• Consider alternative course
• Consider medical factors (prognosis, outcomes)
• Consider life factors (wishes, family, spiritual, cultural)
• Ethical concepts
• Possible consequences
Top Tips for Systematically Implementing Advance Care Planning in Long Term Care
Facilities
Recommendations before implementation….
Comprehensive ACP staff education package
Comprehensive policy on ACP tailored to LTC site
Structured ACP process for staff to follow
Clarify who is responsible for each aspect of ACP process
Specialist training for staff members to facilitate ACP
Protected time for engagement in ACP
During implementation….
Appropriate educational material for residents and families
Education of GPs
Open communication between nursing staff, residents, families and doctors
ACPs should be accessible and all staff aware of the existence and content of forms
Provide information to out-of-hours doctors, paramedics, local ED departments
During implementation….
Communication and collaboration between LTC staff, GPs (including out-of-hours doctors), ambulance services and specialist palliative care doctors
Ensure ACP forms are easily interpretable by different groups of HCPs
Design systems for seamless transfer of ACP information between different healthcare settings
Implement quality assurance systems in the nursing home
Resources
http://www.endoflifecareforadults.nhs.uk/publications/pubacpguide
National Programme
• http://learningplatform.thepalliativehub.com/enrol/index.php?id=14
Resources
• http://www.goldstandardsframework.org.uk/Resources/Gold%20Standards%20Framework/Test%20Content/TipOnUsingTheAdvanceCarePlanv1.pdf
• https://www.committedgiving.uk.net/ncpc/publications/Product.aspx?id=358
Recap on Learning Outcomes
• Describe the rationale for conducting Advance Care Planning
• Identify the steps involved in completing an Advance Care Directive
• Critically discuss the key challenges in decision making for end of life
• Recognise and complete a ‘viable’ personal statement
• Understand the process of systematically implementing a programme such as ‘Let Me Decide’ in LTC