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Robert Sibbald et al. A checklist to meet ethical and legal obligations to critically ill patients at end of life
pp
Healthcare Quarterly Vol.14 No.3 2011
Abstract
Despite improvements in communication, errors in end of life
care continue to be made. For example, health care
professionals may take direction from the wrong substitute
decision-maker, or from family members when the patient is
capable; permit families to propose treatment plans; conflate
values and beliefs with prior expressed wishes or fail to inquire
about prior expressed wishes. Sometimes health care
professionals know what prior expressed wishes are but do not
respect them, or do not believe they have enough time to have
an end of life discussion or lack the confidence, willingness and
skills to manage one.
As has been shown in initiatives to improve in surgical safety,
using a checklist presents opportunities to potentially minimize
common mistakes and errors when engaging in end of life care.
A checklist can help focus on what needs to be communicated
rather than how it needs to be communicated. We propose a
checklist to support health care professionals meet their ethical
and legal obligations to patients at end of life. The checklist
should minimize common mistakes and in situations where
irreconcilable conflict is unavoidable, will ensure both healthcare
teams and family members are informed and prepared.
Illustrative Case
An 84 year old patient is transferred to the ICU with respiratory
failure due to hospital acquired pneumonia. Sheila has severe
functional impairment, two stage 4 sacral wounds, and difficulty
swallowing with a high risk of aspiration. While discharge home
is unlikely Sheila’s family and her SDM remain hopeful and
believe in her ability to rally. When Sheila suffered a respiratory
arrest, a “full code” was run as per family’s wishes; however
after resuscitation it was apparent that she sustained a severe
anoxic brain injury. The family continued to insist that
“everything be done”. A tracheostomy was performed and after
some time in the ICU she was transferred to the floor. At this
time the family began to report that Sheila was communicating
with them. They are hopeful she will be back to her old self
soon. One night she is again discovered in cardiorespiratory
arrest due to aspiration of enteral feedings administered through
a nasogastric tube. After another code her physician asked her
family – “do you want us to keep treating her?” and the family
responds, “it is not for us to decide when she dies – it is up to
God to decide – and we cannot lose our grandmother right now
– she means too much to us.”
Introduction
Error in medicine has been defined as “failed processes that are
clearly linked to adverse outcomes.” [1] “Adverse outcomes”
might be anything from longer recovery times to unnecessary
suffering and death. However, the concept of medical error
does not properly address mistakes that might arise while
treating the ‘dying patient’. Adverse outcomes at end of life
require more thought because while traditionally in medicine
death itself would be considered the worst of errors or adverse
events it does not account for the fact that 100% of persons
will die. Therefore, there may be better or worse ways to die
(the philosophy of palliative care presupposes this fact) [2]. So
error at end of life must consider adverse outcomes other than
just death. When death is expected for a patient in the ICU or
A checklist to meet ethical and legal obligations to critically ill patients at
end of life
Robert W Sibbald
1,2§
, Paula Chidwick
3
, Mark Handelman, Andrew B Cooper
3,4
1
Department of Family Medicine, Schulich School of Medicine and Dentistry, University of Western Ontario
2
London Health Sciences Centre, London Ontario
3
William Osler Health System, Brampton Ontario
4
Division of Critical Care Medicine, Faculty of Medicine, University of Toronto
§ Corresponding Author
Email Address: robert.sibbald@uwo.on.ca
Robert Sibbald et al. A checklist to meet ethical and legal obligations to critically ill patients at end of life
pp
Healthcare Quarterly Vol.14 No.3 2011
elsewhere, there are several types of error that we do not always
consider (Table 1).
TABLE 1.
Examples of ‘error’ at end of life:
Not acting on prior capable wishes
Not identifying legal substitute decision-maker(s)
Not explaining consequences of the treatment alternatives resulting in
unrealistic expectations
Allowing a family members or SDM to ‘direct’ care resulting in treatment(s)
that are not indicated
Repercussions of these errors include moral distress and
moral residue for the family and treatment team [3-5];
prolonged stays in the ICU, and confusion, misunderstanding
or conflict between team members or between health care
professionals and family members [6,7] These errors, when
not identified, can also be the source of team-family conflict
[3,8,9,10] It has been suggested that end of life conflict should
be addressed by creating policies and statements that guide
healthcare professionals behaviour [3, 11-13] or defining
notions of futility/inappropriateness [14,15]. While formally
established professional opinions have provided information
[16], such documents have done little to prevent end of life
conflict [17]. Others have suggested that underlying all these
errors is poor communication [7, 10, 18-20] and several
mnemonics have been created to trigger important elements to
raise in conversations (e.g. ASCEND, VALUE, etc) [21]. While
these tools are useful in considering how one should
communicate, they do not address what information is
necessary to communicate in order to meet legal and ethical
obligations to the patient. Further, if errors lead to conflict, they
may actually be the source of communication problems rather
than the other way around.
There is uncertainty regarding what constitutes an end of life
conversation, (e.g., who should be involved, when it is
appropriate, and what should be discussed) and also a lack of
comprehensive documentation on end of life conversation [22].
For these reasons we propose a checklist that will support
health care professionals to meet their basic ethical and legal
obligations to patients at end of life, and documentation to
support them. As has been shown in initiatives to improve in
surgical safety [23], using a checklist presents opportunities to
potentially minimize common mistakes and errors when
engaging in end of life care. An effective checklist must be
patient centered, process oriented and values driven.
Legal Framework
The checklist draws heavily from The Health Care Consent Act
(HCCA) of Ontario because it is more detailed than the consent
laws from other jurisdictions (e.g. includes notions of
withdrawal and withholding in its definitions) and also provides
a novel process for resolving conflicts (i.e. Consent & Capacity
Board) that has proven more efficient than traditional courts
processes [24] that physicians find beneficial [25]. However, the
broad ethical and legal principles are the same across Canada
and this checklist could be used in any Canadian Province.
Checklist
In order to meet one’s ethical and legal obligations and
minimize errors when providing end of life care, we propose
using this checklist (Table 2)
1. Ask the capable patient about his values and beliefs
Taking direction from a capable patient is required by the
ethical and legal principles that underlie the principle of
autonomy and The Health Care Consent Act [HCCA, 1996].
Sometimes, healthcare professionals turn to capable, caring
informed families for direction on treatment decisions despite
the presence of a capable patient. First, ask how your patient
makes decisions in his/her family and/or how he/she would
like decisions to be made. In some cases, a patient’s or family’s
cultural values will reflect different models of decision making
(e.g. elder family member makes all decisions or a group of
family members or friends make decisions). Whatever the
model of decision-making, it should be respected (within the
law) and documented. Patients are presumed to be capable
unless they no longer have an ability to understand the
information required to make a decision or no longer have the
ability to appreciate the consequences of making that decision
[26]. It is only at this time that we can ethically and legally take
direction from the substitute decision-maker. The HCCA also
requires that the practitioner proposing the treatment be
responsible for determining the capacity of the patient
(http://www.e-laws.gov.on.ca/html/statutes/english/elaws-
statutes_96h02_f.htm#s10s1). If the patient is deemed
incapable, the practitioner must document finding of incapacity
(and the reasons for it) and where appropriate explain the
finding and its consequences to the incapable patient, advise of
the right to challenge it and assist with that process if the
patient indicates a desire to do so.
2. Ask the substitute decision maker about prior expressed
wishes, and values and beliefs of the patient
In some end of life cases, the health care team will turn to
the first identifiable family member to make decisions.
However, it is the responsibility of health care professionals to
identify the legally correct substitute decision-maker(s) to obtain
consent. Culturally, there are many approaches to familial
decision making. For example, some interpret kinship relations
in a way that is not reflective of the HCCA interpretations of
Robert Sibbald et al. A checklist to meet ethical and legal obligations to critically ill patients at end of life
pp
Healthcare Quarterly Vol.14 No.3 2011
kinship. In the HCCA, “brother” or “sister” means a genetically
related or legally adopted individual. For others, “brother” or
“sister” may be someone who has significant meaning in the
patient’s life but is not legally related. In situations where there
are multiple substitute decision makers, (siblings) a reasonable
effort must be made to reach all of them. The HCCA sets out
the hierarchy of substitute decision-makers and requires that
they be willing, available and capable with respect to the treatment
decision for which consent is sought. ( http://www.e-
laws.gov.on.ca/html/statutes/english/elaws_statutes_96h02_f.
htm#s20s1 ). Substitute decision makers need to be informed
of their obligations in decision making (http://www.e-
laws.gov.on.ca/html-/statutes/english/elaws_statutes_96h02-
f.htm#s20s2): they must consent or refuse consent first in
accordance with prior expressed applicable and capable wishes,
and if none exists, then based on best interests, as the legislation
defines that phrase. Required considerations of “best interests”
are carefully detailed in Section 21 to include the patient’s
values and beliefs as well as clinical situation (e.g. is the patient
likely to benefit from the proposed treatment?). Substitute
decision-makers cannot legally consent or refuse consent based
on what they prefer for the patient, although in practice, this
often occurs [24].
Ask substitute decision-makers about the patient’s prior
expressed wishes and about the patient’s values and beliefs.
One way to do this is to have SDMs recall a story about the
patient [27]. These values and beliefs should inform how
‘benefit’ is construed [13].
Substitute decision-makers cannot propose treatments
although it is quite common that they do. Nothing in the law
requires a health practitioner to accede to proposals made by
substitute decision-makers (or patients in some cases) for
treatments that in the opinion of the practitioner are not
indicated or offer no medical benefit. It is important to clearly
communicate what is being proposed and in some cases to put
limits on the duration of a proposed treatment(s). Discussions
about all the above should be documented.
TABLE 2.
Checklist for meeting ethical and legal obligations at EOL
Ask the capable patie
nt
about wishes and
beliefs
a.
“What is your understanding of your condition?”
b. “What worries you about your situation?”
c. “How do you make decisions in your family?”
d. “What is important to you right now when making decisions?”
….Document. If the patient is not capable, document this before proceeding to 2.
Identify the legally
correct SDM
a.
See hierarchy of decision makers (HCCA, Sec. 20)
b. Document decision maker(s)
Ask the substitute
decision-maker (SDM)
a.
“Is there a living will?”
b. “Do you know your role?” (e.g. to act on prior expressed wishes or best interests)
c. ”Do you know what the patient would have wanted in this situation and what was important to them ? (beliefs or
share stories)
…Document what you learned.
If there is no prior
applicable wish, inform
SDM about “best
interests”
a.
“If there are no prior expresses wishes we then have to consider what is in the best interests of the patient
–
that
means “we can propose treatments that will change or improve the condition of the patient for the better, while taking
into account their goals, values, and beliefs.”
Propose
indicated
treatment plan
a.
Say “We are going to do what will benefit your love
d one and we will continue the treatments that are indicated and
in her best interests.” OR
b. “Your [patient] is really sick, we will provide treatment that improves or changes [his/her] condition for the better, so
that leaves us with the following options... palliative care, comfort care …”
c. “When a treatment is no longer indicated, we will let you know that we are no longer providing it.”
If NO consent is
obtained…
a.
Say “It is a challenge when we cannot reach agreement however; we have resourc
es that can help us called the
Consent & Capacity Board. They are a neutral third party that will come into the hospital and listen to both sides of
the story. They will then decide what is in the best interests of the patient.” Patient will likely have a lawyer, as may
we. You are entitled to have one also. Refer to www.ccboard.on.ca
b. Document you have explained the role of CCB . Give the family time ask questions
Robert Sibbald et al. A checklist to meet ethical and legal obligations to critically ill patients at end of life
pp
Healthcare Quarterly Vol.14 No.3 2011
3. Form and Propose a Treatment Plan to the patient /
substitute decision-maker
Treatment plans are defined in the HCCA as being proposed
by one or more practitioners to resolve a condition or number
of conditions. A “Plan of Treatment” may also include the
withholding or withdrawal of a treatment. Health care
professionals meet their ethical and legal obligations when they
propose a treatment plan that is medically indicated and that
reflects the patient’s previously expressed capable wishes
applicable to the circumstances and / or the patient’s values and
beliefs. There is no ethical or legal obligation to propose a
treatment plan that is not medically indicated. However, it may
be unclear if a life sustaining treatment is indicated or not.
There is a difference between providing non indicated
treatment because the family demands it and a disagreement
between what physicians agree on what is indicated. Either way,
it is not appropriate to take direction from SDM’s on what is
indicated. Deciding what is indicated is a matter of professional
integrity.
The physician must exercise his/her judgement in
determining what is indicated. The legal interpretation of the
‘standard of care’ may be useful in this regard. In Crits v. Sylvester
[28] the court described the standard of care as “the degree of
care and skill which could reasonably be expected of a normal,
prudent practitioner of the same experience and standing.”
How practitioners decide what is indicated can be done through
collaborative approaches (e.g. Board Rounds, Team Rounds),
that have been found useful in similar circumstances. In
Ontario, the College of Physicians and Surgeons also provides
guidance in its policy on end of life treatments. In particular, it
describes the circumstances where end of life treatment should
not be offered (“[When] there is almost certainly no chance that
the person will benefit from CPR and other life support, either
because the underlying illness or disease makes recovery or
improvement virtually unprecedented, or because the person
will be unable to experience any permanent benefit.” [13].
Whatever agreement or disagreement is found among team
members should be documented. If no agreement can be
reached regarding the determination that a treatment is not
indicated (and therefore should not be proposed), then a
treatment plan that is determined to be in the best interests of
the patient (that may include withholding or withdrawal) should
be proposed to the SDM for consent. Treatment plans may
have to change when the patient’s condition changes. This
information should be shared with SDMs when initiating
treatment if it is reasonable, or when the patient’s condition
requires it. This sharing of potential outcomes is especially
important for substitute decision-makers who may have
unrealistic expectations about treatment plans and who may not
appreciate the limits of treatment. Discussions should be
documented.
Treatment plans and changes to them require consent,
unless these treatments are no longer indicated. To meet the
legal obligations of informed consent, the decision must be
informed, voluntary, and provided by the legal substitute
decision-maker. In situations at end of life, proposing
treatment plans in the positive instead of focusing on what is
not indicated is more effective [25] For example, if further
aggressive treatment would not benefit the patient then
palliative care should be proposed. If you believe that the
substitute decision-maker is not providing consent in line with
prior expressed wishes or best interests, then an application can
be made to the CCB. The CCB process as a means of resolving
end of life conflict have been described in detail elsewhere [3,
25, 29]
No CPR / Escalation
No CPR order and “no escalation” pose unique challenges in
that they are often discussed in advance and include treatment
that the team is not intending to perform. The patient’s
condition is not static and the challenge for the team is deciding
whether CPR is indicated in this context and that a patient’s
condition cannot improve to a point where treatment may be
indicated. According to the checklist if agreement can be
reached on this point that treatment is not indicated then it is
not a matter of consent and therefore does not need to be
proposed. If the team is not sure whether CPR is indicated they
can propose an appropriate plan of treatment and seek consent.
Conclusions
While excellent communication is desirable for any end of life
conversation, healthcare professionals must first be able to meet
their basic ethical and legal obligations to critically ill patients. A
checklist for managing these obligations in end of life scenarios
offers several benefits (see Table 3). The checklist we propose
could minimize common mistakes and errors when engaging in
end of life care by being patient centred, process oriented and
values driven. The checklist will ensure the team takes direction
from the correct substitute decision maker; the substitute
TABLE 6.
Benefits of Checklist
Minimizes common errors at end of life
Ensures patient centred decision-making by respecting wishes and
values
Respects professional integrity and clinical judgment
Ensures team meets ethical and legal obligations to patients
Clarifies what constitutes an end of life conversation
Robert Sibbald et al. A checklist to meet ethical and legal obligations to critically ill patients at end of life
pp
Healthcare Quarterly Vol.14 No.3 2011
decision-maker consents in accordance with the legislative
standards; that decision-making is patient centred by
establishing prior expressed wishes, beliefs and values of the
patient; and that there is respect for the professional integrity of
physicians proposing treatment plans. Finally the checklist can
reduce uncertainty regarding what constitutes an end of life
conversation and provide clear steps to manage conversations
at end of life
Illustrative Case Analysis
While the team was confident the patient was not capable it was
not documented in the clinical notes. The team using the
checklist documents this finding by dictating a note that the
patient does not have the ability to understand the situation and
appreciate the consequences of making a decision. Sheila is also
is too critically ill to be able to understand the “rights advice”
and challenge the finding of incapacity. The team discovers
through conversation the son is recognized as the legal
substitute decision-maker and not the husband and that this
family decision-making model is documented. After asking the
family what their understanding of the situation is they discover
the family expects that the patient will be fine in a few weeks
because hospital visit “do her good.” And a birth is expected
and everyone knew she wants to see the grandchild. There was
no explicit advance directive or living will but the team did find
out from her husband that she said when the dementia got
really advanced “please no heroics” and “let me die.” The team
also found out that the patient was a proud, highly valued
member of her community who love to cook for others and
never wanted to be a burden on anyone. The team took some
time to explain the role of the SDM and it turns out that the
family had no idea they had to make decisions according to
prior expressed wishes or best interests. They said it was a great
relief to learn that they did not have to carry the burden of the
decision of life and death of their mother and wife. Based upon
the information about prior wishes and values of the patient
and clinical prognosis the team proposed a treatment plan
based on palliative care to emphasis symptom control. They
take some time to propose and go over the plan with the family,
who are very concerned. A cousin who is also a Senator from
California that carries a lot of influence wanted to be
teleconferenced in to participate. The son authorized this
sharing of his mother’s personal health information with the
cousin. During the meeting the cousin demanded “everything”
be done - he had not seen his aunt for a number of years and
said she just “could not die now” The team explained
respectfully that while sharing the information about the patient
was ok the cousin did not have a formal decision-making role in
the proposed treatment plan. The team gave some time for the
family to think about the decision and explained that there was
a conflict resolution resource we could both access called the
Consent & Capacity Board if we could not reach agreement or
if the family could not decide whether palliative care respected
the patient’s wishes, values and beliefs. A day later, the
patient’s son consented to palliative care.
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