Identification of patients who may
benefit from palliative care
(25 minutes)
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Who would benefit from a palliative approach?
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PSP End of Life Care Algorithm
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Identify patients:
Gold Standard Framework triggers
Three triggers for supportive/palliative care:
1. The surprise question: “Would you be surprised
if this patient were to die in the next year?
2. Choice/need: patient makes a choice for
comfort care only, or is in special need of
supportive/palliative care.
3. Specific indicators: clinical indicators for each of
3 main EOL groups (cancer, organ failure, frail
elderly/dementia).
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WOULD I BE
SURPRISED IF JAMES
LEE DIED WITHIN THE
NEXT YEAR?
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Identify: Use prognostic indicators
General:
• Co-morbidity.
• Recent, multiple ER visits/hospital visits.
• Complications of recent hospital stay.
• Reducing performance status (ECOG/Karnofsky/PPS).
• Dependence in most activities of daily living (ADLs).
• Impaired nutritional status despite attempts to improve
 Serum albumin < 25 g/l.
 Weight loss 5-10% of body weight
(last 6 months).
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Identify: Sentinel events
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Palliative Approach:
Care through all the transitions
Early
Disease
advancement
Decompensation
Experiencing life
limiting illness
Transitions
Transitions
Decline and
last days
Dependency and
symptoms increase
Transitions
Transitions
Death and
bereavement
Transitions
Time of
Diagnosis
Time
McGregor and Porterfield 2009
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Sentinel events questions/comments
• “Well, that was a close call. What were you
thinking about when this happened?”
• “What if things don’t go so well the next time?”
• “How did your family do during this time?”
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Identification: Table discussion (15 minutes)
• At your table, start discussing the topics covered:
 How will you think differently about identifying patients
 How will you communicate and to whom
 Consider who should be involved in your community
 Registry
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Patient registry and flagging charts
• Include terminally ill patients with:






Cancer
COPD
Chronic heart disease
Renal failure
Neurological conditions, including dementia
Frailty or multiple co-morbidities
• Develop EOL registry from CDM-based one
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Identification - what changes do you see?.....
Flagging by MOA
• Changes in appearance
• Missing appointments
• Admissions to Long Term
Care or multiple
hospital visits or even
frequent doctors visits
• Family members
expressing concern,
wanting to talk to the
doctor about them
• Changes in behaviour
• Changes in gait
• Decrease in ability to care
for themselves
• Changes in
communication
• Gut feeling
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Identification: Pearls
What have we learned?
1. Everyone can seek to identify.
2. Tools are available to support identification



Surprise question (intuitive awareness of
transition).
Choice (readiness of patient).
Clinical indicators (Functional/Prognostic signs).
3. Tools are available to support identification.
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and beyond the Identification……..
Early
Disease
advancement
Decompensation
Experiencing life
limiting illness
Transitions
Transitions
Decline and
last days
Dependency and
symptoms increase
Transitions
Transitions
Death and
bereavement
Transitions
Time of
Diagnosis
Time
McGregor and Porterfield 2009
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Roles which emerge at transition “points”
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Break
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Communication
(40 minutes)
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Principles of Communication in Medicine
• We treat patients, not diseases
• All healthcare flows through the
relationship between the
healthcare provider and patient
• The spoken language is the most
important tool in medicine
• Adapted from Eric Cassell. Talking
with Patients, MIT Press,1985
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Critical importance of communication
Six key components
1.
Talking with patients in an honest and straightforward way.
2.
Willing to talk about dying: Not abandoning/avoiding the dying
patient.
3.
Giving bad news in a sensitive way: Balancing being realistic with
maintaining hope.
4.
Listening to patients.
5.
Encouraging questions.
6.
Sensitive to patients readiness to talk about death.
Weinrich et al. Communicating with dying patients within the spectrum of
medical care from terminal diagnosis.
AIM 2001; 161: 868-874; Curtis, J Gen Intern Med 2000; 16:41
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Video of failing older man
Things to keep in mind as you view this video:
• This series of videos was created to support learning
about how conversations regarding advance care
planning may be started.
• There are many ways to broach this subject.
• These conversations are intentionally abridged due
to the limits of time for the presentations.
• They represent communications between a
practitioner and a well-known patient.
• In real life these conversations would occur over a
longer visit or series of visits.
As you watch the video, consider what works well and
what might be done differently.
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When to hold ACP conversations
• Patients often give you an opening…..
• Patient history form/intake assessment.
• Annually for all adults: “I talk with all my patients about this
and we talked a little about this last year…”
• Part of chronic disease management: “Hope for the best but
plan for the worst…” "This illness can have a fairly
predictable course…here are some things you need to think
about ahead of time…"
• Following emergency department/hospital admissions: “I
understand you have been in the hospital.
What did the doctors say?”
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Patient wishes
• An Advance Care Plan ensures that the patient's
wishes would be listened to no matter who is present.
• http://www.fraserhealth.ca/media/MyVoiceWorkbookE
NG.pdf (PJ: this link will need to change to the
Provincial model for Sept 1)
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Video of dying young mom
Things to keep in mind as you view this video:
• This series of videos was created to support learning
about how conversations regarding advance care
planning may be started.
• There are many ways to broach this subject.
• These conversations are intentionally abridged due
to the limits of time for the presentations.
• They represent communications between a
practitioner and a well-known patient.
• In real life these conversations would occur over a
longer visit or series of visits.
As you watch the video, consider what works well and
what might be done differently.
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You will be a better communicator if you….
• Assess understanding: “What you understand about
your current health? What are you expecting as your
illness changes?”
• Assess informational needs: “Are you the kind of
person who wants to know all the details about your
illness or just an outline?”
• Assess decision-making style: “Do you make
decisions on your own or as a family?”
Adjust your communication accordingly…
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No CPR form
• Purpose: Physician medical order, with patient’s
written consent, to allow paramedics and first responders
to withhold cardiopulmonary resuscitation if patient has
an arrest.
• Completed by: Physician and patient - community
use only - form not for use in acute care hospital
settings.
www.healthlinkbc.ca/no_cpr.stm
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Video of patient with dementia
Things to keep in mind as you view this video:
• This series of videos was created to support learning
about how conversations regarding advance care
planning may be started.
• There are many ways to broach this subject.
• These conversations are intentionally abridged due
to the limits of time for the presentations.
• They represent communications between a
practitioner and a well-known patient.
• In real life these conversations would occur over a
longer visit or series of visits.
As you watch the video, consider what works well and
what might be done differently.
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ACP: Process and intervention
•
Discuss, document, and review goals of care at
various transitions
•
Break “bad news” across all transition points
•
Include the family in the care process
•
Provide information for the patient/family to
make informed decisions throughout trajectory.
•
Plan for acute episodic and crisis events,
declining function, and terminal phase
management.
•
Planning ahead can prevent suffering
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Glossary
Advance Care Planning (ACP) - the process of a capable adult talking over
their beliefs, values, and wishes about the health care they wish to consent to or
refuse, with their health care provider and/or family, in advance of a situation
when they are incapable of making health decisions. On Sept. 1, 2011, in
addition to being able to appoint a representative in a representation agreement
(RA), an adult will be allowed to make an advance directive.
Advance Care Plan - a written summary of the capable adult’s advance care
planning conversation and wishes to guide their temporary substitute decisionmaker or representative, if called to make a health care decision in the event the
adult is incapable of making decisions.
Advance Directive (AD) - a written instruction made by a capable adult that
gives or refuses consent to health care directly to the health care provider, if no
appointed Representative. If a Representative is appointed, the Representative
must treat the AD as the adult’s wishes, unless the adult has
provided in the RA that the HCP may act on an AD without the consent of the
Representative.
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Glossary (continued)
• Temporary Substitute Decision-Maker (TSDM) – a family
member or friend who is legally qualified and available to make
health care decisions on behalf of an incapable adult. The health
care provider (HCP) must select a TSDM from the list in the Health
Care Consent and Care Facility Admission Act in the order given.
• Representative – a person appointed by a capable adult to
make health care decisions on behalf of the adult if they become
incapable.
• Representation Agreement – the document in which a capable
adult appoints a representative and sets out the type and scope of
decisions that the representative may make on behalf of the adult if
the adult becomes incapable.
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Advance Care Planning legislation in BC
On September 1, 2011, three scenarios will exist for capable adults
to plan or make future health decisions with Provincial My Voice:
1) Advance Care Planning conversation held between patient,
physician and/or trusted family/friend; then patient may choose to
write advance care plan stating their beliefs, values, wishes for
health decisions; (doesn’t make advance directive or representation
agreement)
 Temporary substitute decision-maker makes health
decisions with MD or health care provider per ‘wishes’
OR
2) ACP conversation held; then patient chooses to write advance care
plan and decides to appoint a representative in a representation
agreement
 Representative makes health decisions with MD
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or other provider based on patients wishes, OR
Advance Care Planning legislation in BC
(continued)
3) ACP conversation held between capable adult and physician, and/or
family/friend; then patient chooses to write advance directive; patient
may or may not decide to appoint a representative.
 If patient has an advance directive but no representative:
- Physician follows advance directive as long as it addresses the care required;
- TSDM needed if advance directive does not address the health issue
 If patient has both advance directive and representative:
- Physician must obtain health care decision from representative, unless the
adult has provided in the RA that the HCP may act on an AD without the consent
of the Representative
If the patient has not done, or does not want to do ACP:
 Physician or other care provider must select a temporary
substitute decision-maker from list in HCCCFAA
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ACP legislation in BC: Appointment of a
Temporary Substitute Decision-Maker (TSDM)
The order below matters! (As of September 1, 2011)
The adult’s spouse
The adult’s child (may be any child; birth order not relevant)
The adult’s parent
The adult’s brother or sister (any sibling; birth order not relevant)
The adult’s grandparent
The adult’s grandchild (any grandchild; birth order not relevant)
Anyone else related by birth or adoption to the adult
A close friend of the adult
A person immediately related to the adult by marriage.
The TSDM must be at least 19, been in contact with the adult in past 12
months, have no disputes with adult, be capable of giving, refusing or
revoking consent, be willing to comply with duties in Part 2, section 19.
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Substitute Decision Makers (SDM)
• The role of the SDM is to represent the values, beliefs,
and wishes/preferences/instructions of the patient.
• SDM is a stressful role as own preferences may vary
from those of the patient and/or other family/friends
• Frame the question in a way that clearly indicates what
you need from the SDM:
“What would your father be thinking … ?”
“What would be important to your mother ..?”
“What would they do in this circumstance?”
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“Everything, including CPR must be done”…
“Differential diagnosis” of incongruent requests for
care:
–
–
–
–
–
Language barrier
Low health literacy
Not all options have been discussed
Not understanding the normal process of dying
Not understanding how the day to day events are
manifestations of a terminal illness
– Differing values of what is quality of life and what is
important at end of life
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“Everything, including CPR must be done…”
• Professional interpreter
• Short life review of the patient may elicit
memories of conversations that aid in decisionmaking
• Which member of the team works best with
family?
• Liaise with other teams/physicians involved to
ensure message is consistent
• Build trust with consistent messaging and care
• Ethics, spiritual care provider/community
religious leader consultation if appropriate
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“Everything, including CPR must be done…”
(continued)
• Shared-decision making includes a
recommendation by the clinician
• Decision-making is a balance between
patient/SDM autonomy and physician
beneficence/nonmalificience
• Clinicians must strive not to project their
values onto patients and families
• Keep communication lines open…
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Healthcare provider barriers/solutions
• Cultural: Ask how patient and family make decisions about
serious illness
• Patient responds with emotion: Be sensitive to patient
readiness to discuss
• Not within their role: We can all listen and support patients
dealing with their illness
• Lack of confidence and comfort with the conversation: Learn
some opening lines…
• Don’t want to take away hope: Evidence shows that it increases
patient satisfaction with care
• Time constraints: Can set aside time for this as part
of care
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Patients barriers/solutions
•
Too many medical problems: Discuss what is important to the patient as
their illness progresses – no need to understand illness to discuss this
•
Doctor too busy: Put My Voice brochures in the office waiting room to
show your readiness to discuss
•
Perceiving ACP as irrelevant: “I want to be able to respect your wishes
if you are unable to make decisions
•
Prefer to leave health in God’s hands: Healthcare providers do not
control who lives or dies but we can try to make the journey as
comfortable as possible
•
Information needs about health and choices: Have multiple sources of
information. Canadian Virtual Hospice (www.virtualhospice.ca) is a good
source of palliative care information
•
Nervous, sad, or too busy: Sharing concerns and planning ahead can
reduce anxiety
•
Need help with “the form”: Have the conversation first then
get family member to help with form
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Communication pearls
All primary providers can:
• Initiate ACP conversations.
• Share information.
• Contribute to clarifying needs/preferences and establishing
goals of care.
• Support families to keep talking.
• Clinicians can be healers through listening, supportive
conversation and presence.
“The secret of caring for the patient is caring about the patient.”
• Peabody 1929
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Skills-based practice session
• Groups of 3
– Each scenario has 3 roles: patient, clinician, and
observer.
– Choose role you wish to play.
– Take 1-2 minutes to review your role.
– Clinician initiates the 5 minute conversation.
– Take 2 minutes to review the role play together.
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Review skills-based exercise
• What feelings did you experience as you played the
role of the patient?
• What did you learn as you played the role of the
observer?
• In the clinician role, what surprised you?
• What 1 thing might you change about your ACP
conversations in the future?
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