Download Living Wills / Health Care Directives

“Living Wills”
Fiona Crow MD
March 2009
Where to start?
What do we want to achieve?
When?
Where to start?
The goal is to create an atmosphere with the
patient and/or appropriate other where the
goals of care can be frankly, but gently,
discussed. Where the “client” and significant
others have enough (while not overwhelming
them) information about the illness and likely
outcomes to establish principles to guide
ongoing care and to name a proxy.
This document is fluid because with changes
in status the goals may change.
What are the Obstacles?
What are the Obstacles?
TIME,TIME, TIME it can take a lot but..
 Space and Privacy
 Professional’s discomfort
 Lack of understanding of WRHA ACP levels
and their interpretation
 Lack of experience/knowledge about the
legalities of Advance Care Plan, Health Care
Directive, Living Wills, Proxy, POA etc

Definitions
as pertain to Manitoba
Health Care Directive
Often
imprecise, vague, and
Advance Care Plan
Lack
of consensus –then
static
what?
Logistics
(is it available
when needed?)
Fit
Lack
of understanding by
health care providers
Lack
Developed
Some
without medical
input
Need
to be competent, must
be signed
Some physicians trump
wishes (research based)
in specialty areas
of understanding by
health care providers
physicians trump
wishes (clinical evidence)
Related to
health care
Related to
finances
Patients prior to becoming
incapacitated(incompetent),
appoint a person or persons to
make decisions for them should
they be unable to make their
own decisions
Advanced
directive or
Living Will
= Proxy
Enduring
Power of
Attorney
= POA
The patient has not appointed
anyone or made his or her
wishes known regarding health
or financial issues, but is now
unable to do so. The court
appoints persons to make
decisions on behalf of the
patient
Guardianship
Trusteeship
Manitoba Health Care Directives Act
 Must be competent, aged 16 yrs old or more
 A directive must be in writing and dated (witness not required
unless physically incapable of signing)
 “No person is required to inquire into the existence of a directive
or of a revocation of a directive”
 “No action lies against a person who administers or refrains
from administering treatment to another person by reason only
that the person
a) has acted in good faith in accordance with the wishes
expressed in a directive or in accordance with a decision
made by a proxy; or
b) has acted contrary to the wishes expressed in a directive if
the person did not know of the existence of the directive or
its contents.
Substitute Decision Makers
The following, in order of priority, may act as substitute decisionmakers:
1. A proxy named in a Health Care Directive/Living Will.
2. A Court-Appointed Committee appointed under section 75(2) of the
Mental Health Act, or a Substitute Decision-Maker for Personal
Care appointed under the Vulnerable Persons Living with a Mental
Disability Act. A Committee or a Substitute Decision-Maker for
Personal Care may be an individual(s) or the Public Trustee. Some
Orders of Committeeship were previously known as “Orders of
Supervision”. Existing Orders of Supervision are treated as Orders
of Committeeship under the Mental Health Act.
3. Others, including family and/or friends.
Family/Friends as Substitute Decision Makers
• likely to be the most common scenario.
• For ACP, must have the support of all interested and
available parties.
• usually, but not necessarily, a close relative, who speaks
for all.
• may, however, be a supportive friend
• Power of Attorney does not entitle its holder to make health
care decisions however…
 on occasion, an existing power of attorney may be
most appropriate to fulfill this role, since such an
individual, although limited to property decisions, has
obviously been placed in a position of trust.
slide courtesy of Dr M Harlos
Advance Care Plan 4
This plan provides for all available treatment
of all conditions, and includes full CPR.
WRHA Advance Care Plan 1
This is often referred to as palliative or comfort care. It focuses on
aggressive relief of pain and discomfort. There is no CPR
(intubation, assisted ventilation, defibrillation, chest
compressions, advanced life support medications). There are
also no life sustaining or curative treatments such as ICU, tube
feeds, transfusions, dialysis, IV’s and certain medications. All
available tests and treatments necessary for palliation are done,
including medications and transfer to hospital if necessary.
and everything in between…
ACP 1 on deeper discussion may NOT
necessarily mean no lab, no treatments but
rather that the focus is comfort. Depending
on the burden and goals at that moment
treatment, that is not aimed at cure but
rather quality and time, may be considered.
ACP 4 does not mean that it is not
appropriate often to discuss the
“what if ….”
Barriers to Physician Comfort
Barriers to Physician Comfort



Sense of failure
– Reframe task , chance to connect, helping
provide a better experience for patient and
family.
Patients do not want to discuss these issues.
– Data does not support this, ask the patient
permission, ask what is hard for them.
Do not want to take away hope.
– Reframe hope and opportunities
Barriers to Physician Comfort
…cont’d



Discomfort with lack of certainty
– Help patients ask for and get the info they
need to make decisions.
Getting close to the patient will interfere with
my ability to care for them.
– With time you will take lessons from your
patient and grow because of the experience.
Discomfort with silence.
– Practice it will feel okay, think about what
the silence is saying.
Weiner, J.S.et al 2004
Essentials Of Discussion
Essentials Of Discussion
Willing? Capable? Where? With whom?
Confirm diagnosis and expected outcome.
What options are there for treatment?



–
What is reversible and what is not. Be as clear as
possible
Leave space for hope, address fear of
abandonment.
Uniqueness of their situation.


–
–
Prognosis is an estimate
Possibility of unexpected events for good and bad
Essentials Of Discussion
cont’d..
Is there an advance directive already.
 Address sense of unfairness, of being a
burden.
 Make eye contact and appropriate
physical contact.
 Finally ask for some sense of
understanding of discussion.

Pentz,R.D. et al 2002
How to open the discussion when not
a response to an enquiry.
Family Conference
Proxy
Bedside
“Family Conference”
1. Introductions.
2. Ask them for quick background of their
understanding of illness.
3. Ask them for a sense of the trajectory
over the last while.
Help for substitute decision
makers:
Help for substitute decision makers:

Remind them of their role.
– Speak from loved one’s head and not their heart

Have there been recent comments reflecting a
probable approach?
– “I’ve had enough… I wish this would end soon”

Consider the difference between prolonging living
and making someone take longer to die.
– A concept that depends on interpretation of the quality of
life… need input from patient / family.

Values exhibited/ discussed with decisions in the
past
Treatment / Intervention
Considerations
Treatment / Intervention Considerations
 What are the goals of the treatment?
 Whose goals are they, and are they consistent with
those of the patient?
 Is it possible to achieve the goals?
 What are the:
 Positive effects vs. Side effects (clinical assessment
by health care team)
 Benefits vs. Burdens (experiential interpretation by
patient / family)
 Is there enough reserve to tolerate the treatment?
slide courtesy of Dr M Harlos
Bedside with patient
Do they want to talk about their
illness and its implications??
Values
What do you value about your life?
– Pleasurable activity, cognition, dignity,
relationships, surroundings.
 How do you feel about death and dying.
– Fears of process and / or afterlife.
 Do you believe life should always be preserved
as long as possible, if not what situations might
lead you to feel otherwise? Can you imagine
scenarios where this would be tolerable
temporarily?

Values, cont’d
What is fair to tolerate in the face of
various prognoses.
 Do you hold any religious or moral
views that influence your treatment
choices.
 Have you heard of or witnessed end of
life scenes that influence your answers
and feelings.

Lynn.J, & Harrold,J.1999
Example:

In case of a serious illness or injury, there
are a number of medical procedures called
interventions, which can prolong life and
delay the moment of death. These include
ventilation, tube feeding, intravenous fluids,
etc. It is important to think about and
choose what you want from the following:

Fraser Health
• Have full life support with medical
interventions.
 • Have a trial period of life support with
medical interventions and, if unsuccessful,
allow natural death to occur. The trial
period could last several days or weeks and
would be the result of a discussion between
your substitute decision maker and your
healthcare providers.
 • Limit the use of life support with medical
interventions and allow natural death to
occur.

Patient / family resources




WRHA advance Care Planning booklet ( available on line at
the WRHA site).
ERIK booklet .Winnipeg Fire and Ambulance.
Let me Decide .
http://www.newgrangepress.com/let_me_decide_series_boo
ks_videos.html
Government of Manitoba
(www.gov.mb.ca/health/livingwill.html)



▪ Manitoba Ministry of Healthy Living:
http://www.gov.mb.ca/health/legislation/statutes.html
▪ Health Care Directives Act, C.C.S.M. 1992, c. H27:
http://web2.gov.mb.ca/laws/statutes/ccsm/h027e.php
Fraser Health
http://www.fraserhealth.ca/Services/HomeandCommunityCare/Advance
CarePlanning/Pages/Workbook.aspx
References






Knopps, K.M. et al. 2005. Patient desires: A model for assessment of
patient preferences for severe or terminal illness. Palliative and
Supportive Care. 3: 289-299.
Weiner, J.S. et al. 2004. Acare, a communication training program for
shared decision making along a life limiting illness. Palliative and
Supportive Care 2: 231-241
Pentz R.D. et al. 2002 Discussion of the Do Not Resuscitate order: A
pilot study… Support Care Cancer 10: 573-578
Lynn, J and Harrold, J. Handbook for Mortals. Guidance for people
facing serious illness. 1999, Oxford University Press. p 122
WRHA presentation on ACP
Pallium
Facilitating Advance Care Planning: An Interprofessional Educational Program.
Curriculum Materials. Educating Future Physicians in Palliative and
End of Life Care (EFPPEC)