Conversation Guide and Manual for

Identifying Patients’ Health Priorities

© Mary Tinetti, Aanand Naik, Lilian Dindo, 2018

2
I Table of contents

Introduction and overview………………………………………………………….. 4

How to use this manual …….…………………………………………..…….…….. 7

Step 1
Exploring what matters……………….………………………………………... 9

Step 2
Doing what matters…...………………………………………………………... 14

Step 3
Understanding health tradeoffs …………………………………………… 20

Step 4
Talking with your health care team ……………………………………….. 23

Step 5
Adapting to changes in your life and health………………………… 28

STEP 1 STEP 2 STEP 3 STEP 4 STEP 5

3 © Mary Tinetti, Aanand Naik, Lilian Dindo, 2017
 Project overview I Overview of Purpose
The purpose of this intervention is to elicit patients’ values and health goals, empower them
to become more engaged partners in their health care, and provide their clinicians with
information to align their health care with the patient’s health goals and care preferences.
The patient is the expert in what matters most to them; their providers are the experts in
how to help the patient get there.
Your role as health priorities facilitator is to walk the patient through the following process:
1. To help the patient express their values (step 1). Values are the things that matter most for the
patient. Values tend to remain stable even with life and health changes, and will directly lead to the
patient’s goals and health care preferences. Common values are things like family or friends, spirituality,
hobbies, independence, etc.
2. To help the patient establish health outcome goals (step 2). SMART health goals (specific,
measurable, actionable, realistic, and time based) are best. Additionally, the best goals are activities that
are consistent with the patient’s values and what the patient most wants to be able to achieve. For
example, a value of family might lead to a goal of being mobile enough to attend family outings. A value of
spirituality might lead to a goal of managing their fatigue to be able to attend church.
3. To help the patient recognize how their health and health care helps or hinders the
achievement of these outcome goals (step 2). For example, a goal of being mobile enough to
attend family outings may be hindered by arthritis, but helped by prescription arthritis medication. A goal
of being able to attend church may be helped by using a walker, but hindered by using oxygen. In this
process, you will also assess for healthcare burden (healthcare activities interfering with goals).
4. To help the patient express care preferences and make decisions on health tradeoffs (step
3). Care Preferences are what health care activities the patient is willing and not willing to do to achieve
his/her health goals. For example, a patient with mobility issues may be willing to try physical therapy, but
not surgery. Tradeoffs are when the patient needs to balance or exchange one thing or event for another.
Tradeoffs may be between: 1) one desired outcome or another (e.g., prioritize working on mobility vs. pain
control right now); 2) a desired outcome and what the person is willing and able to do or accept to achieve
the desired outcome (for example, the patient may decide that taking NSAIDs for their arthritis helps with
mobility, and they are willing to accept the increased risk of stroke).
5. To help the patient communicate those goals, care preferences, and tradeoffs back to their
health care team and to help patients become active participants on their care team (step
4). The purpose of this process is to promote a partnership between the patient and their health care
team through proactive communication methods to help the patient meet their goals. Patients learn how
to communicate with their healthcare team, and create a personalized summary of goals and health care
preferences to bring to their next primary care appointment. Throughout the intervention, remind the
patient to share the information discussed with their health care team. You may even suggest helpful ways
to word statements or start the conversation. Through patient activation and strengthening patient-
clinician partnerships we hope to achieve alignment of health priorities to current treatment.
6. To help the patient plan for health care changes based on their health trajectory (optional
step 5). Health trajectory is how a person’s health and functioning will likely change in the future. As their
health changes, certain goals may become more or less realistic, and care preferences may change as well.
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Project overview I Practical Information
The intervention consists of the following 5 steps:

1.Explore 2. Do what 3. Understand 4. Talk with 5. Respond to

what matters matters health tradeoffs providers life changes

Overview
Steps 1—4 are covered with every patient. Step 5 is a flexible session that is tailored to a patient’s
individualized needs and circumstances. Each is designed to take approximately 20 minutes,
although some patients will grasp these concepts right away and identify their values quickly,
others may need help and additional time. You can complete a single step or two steps each
time you see the patient. The steps are structured, yet we encourage flexibility in order to meet
each patient’s needs. As a result, the exact nature of the intervention you deliver may vary from
patient to patient.

Encourage the patient to include any caregivers and/or family members who are important to
him/her. These individuals will both help construct and be privy to the patient’s health goals
and care preferences. However, remember that this intervention is focused on the patient’s
goals, not their caregiver’s.

Some patients may not want to write in their workbook because they feel overwhelmed or
they have physical restrictions such as arthritis or tremors. You can transcribe the patient’s
ideas in the workbook for them if they are willing; otherwise, you can discuss the questions
verbally. Guide them through the process using the prompts and questions. At a minimum,
the only sheet that must be filled out is the Summary of Health Priorities on patient workbook
page 21. Patients will bring this sheet to their next primary care appointment, in order to
spark a conversation about aligning healthcare to their goals and preferences. Tips for starting
this conversation are on the back of this sheet (page 22 in the patient manual). The
information obtained in the intervention should also be integrated into the patients’
electronic medical records using a standardized template (provided; see instructions on p. 31
of this facilitator manual).

STEP 1 STEP 2 STEP 3 STEP 4 STEP 5

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Project overview I Tips for Guiding the Conversation

• Active listening is an important skill for ensuring that you help patients identify their
own values, goals and care preferences. Active listening means using non-verbal cues
like nodding and appearing interested, and verbal cues such as summarizing what the
patient has said to ensure you understand.
• The most important thing you can do as the facilitator is listen to what the patient is say-
ing and watch where he/she “lights up.” Their voice and body language may show you
what is most exciting and meaningful to them, and then you can follow up by asking
more about these activities and how their health relates to them.
• These sessions are never completely linear. You may need to circle back or jump ahead
as a patient brings up an important issue. On the other hand, sometimes patients may
go off topic. You may listen briefly and sympathetically and then redirect them back to
the topics at hand by saying something like: “That family conflict sounds really stressful!
But I want to make sure we save time to talk about your goals.”
• Sometimes patients will be confused about what we are asking. They likely have never
had to identify values, goals, or care preferences in this way before. You may try to pro-
vide an example (e.g., the Dave example from the patient manual) or suggest an answer
based upon something the patient has already said (e.g., “I remember you mentioned
that a medication you’re taking helps with shortness of breath but causes you to go to
the bathroom all night. That sounds like a tradeoff to me. What do you think?”
• Remind patients that there are no right answers and they can feel free to be honest with
you. This is about getting the healthcare they want, not what their health care providers
or family want.
• At each step in the process, validate what the patient tells you. Validation means that
you convey to the patient an accepting, non-judgmental attitude, and that you recognize
the validity, worth, or truth of what they are saying. Example validation language in-
cludes: “You’re overwhelmed by all of your healthcare activities. That makes a lot of
sense.” “I can understand why you’d rather not take any more medications! You’re al-
ready taking a lot.” or “That sounds really frustrating!” Validation language conveys to
the patient that this is an accepting place to express whatever opinions and preferences
they have, which is crucial to eliciting their true goals and care preferences.
• Your role as a facilitator is to stay objective. There may be times that patients might want
something that you disagree with or think is the wrong direction for them, but your role
as a facilitator is to help each patient achieve their goals and live according to their val-
ues to the degree possible.
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 How to use this manual:

This manual follows the steps in the accompanying patient workbook, page by page,
with screenshots of the accompanying patient manual pages. It is meant to be used in
conjunction with that workbook. This assumes that you have completed training in
Value-based Health Priorities facilitation and understand the concepts and purpose of
the health priorities elicitation. Refer back to the facilitation training for more in-depth
discussion of the concepts.

These boxes will give

instructions on what to say or
how to help the patient with
the exercises on the page.
“Suggested language to use
with patients is presented in
blue.”
Of course, feel free to use
whatever language is most
natural to you and
understandable to the patient.

Tips:
 Helpful tools for the
facilitator will appear in
these orange boxes.

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 INTRODUCING THE PROGRAM: PAGE 2

Before we start going through the steps, it is important to make sure the patient under-
stands the purpose of this intervention. Having patient buy-in is crucial to engagement in
the process. Additionally, you should identify your connection with their current
healthcare providers, making sure the patient understands that you are part of their
healthcare team and will be communicating with their healthcare team, and also that they
are an important part of their healthcare team. Make sure you give the patient time to
ask questions.

“I work with your health care

team and they want to know
more about what matters most
to you in your life and your
health. The more he/she knows
your goals and understands
your feelings about your health
and your health care, the better
he/she can help you make the
best choices about your care.
It’s about finding what works
best for you. In Step 1, we will
start with what matters to you
in life. In Step 2, you will set
goals. In Step 3, you will discuss
how your healthcare helps or
doesn’t help you meet your
goals. In Step 4, you will state
your health care preferences,
and finally, in Step 5, we will
work on communicating those
with your health care team.
Do you have any questions for
me before we get started?”

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 STEP 1: PAGE 3

Direct the patient to turn to page 3 to begin step 1. Introduce the step, summa-
rizing the bullet points on page 1.

“First, we’re going to

talk about what
matters most to you,
and what you want
your healthcare to
be able to do for
you.”

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 STEP 1: PAGE 4

The first step is to identify the patient’s values. Direct them to look at the diagram on
page 4 for examples of possible values. Provide a few examples, so they understand
what you mean by values. Sometimes people have a difficult time understand the
word “values”. If so, use “what matters most to you” or “what’s most important to
you in life”.

“First we’re going to start

with what’s most
important to you, or
what you might call
values. Look at this
picture—it has some
examples of what
matters most for
different people, like
family, friends,
independence,
recreation, or spirituality.
What comes to mind
when I ask, ‘What
matters most to you?”

10
 STEP 1: PAGES 5 & 6

Page 5 introduces an example character that patients will follow throughout the work-
book. On page 6, Dave lists what matters most to him. You can briefly go through this
example so that patients understand what we are asking for when we discuss values.
Remind patients that everyone has their own values, and there are no right or wrong
answers to these questions.

“This is an example of another

patient who went through this
process. We are going to go
through this just as an example.
Remember that everyone has
their own values—there are no
right or wrong answers.”

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 STEP 1: PAGE 7

Next, we ask the patient to identify their own values. Go through each of the four domains to
assess the patient’s values in that area using the questions provided. If the patient has trouble
writing, offer to write for them or have them say the answers out loud.
Clarifying values early on will help the patient in step 2 identify meaningful goals that are con-
sistent with their values. In later sessions, patients may identify goals that are not realistic; if
the facilitator is aware of the value underlying the goal, the facilitator can help the patient
identify other goals that reflect the value.
Additional prompts if necessary: “If you had
to name the three things that matter most
to you in your life, what would they be?”

Connecting: “Who are the most important

people in your life? How often do you get to
see them? What kinds of things do you do
together?

Enjoying Life: Which activities do you do that

you find so important and enjoyable that
you can’t imagine living without them?
What brings you enjoyment or comfort?

What could you do before that you would

like to do now? What do you do now that
you’d like to be able to keep doing?

Functioning: “What does a good day look

like and what does a bad day look like?
When it is a good day, what goes right?
What kinds of things are you able to do/not
able to do? How do you feel about asking for
or accepting help?

Managing health: In what ways do your

health conditions and treatments limit your
ability to do what matters to you?

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Tips:
• A patient may only be able to articulate one particular valued life activity or ability that
is at the forefront of their mind, but that doesn’t mean the others are not as
important. It is important to systematically ask about all the valued life activity / ability
domains to make sure the patient has the opportunity to identify activities in many
areas. It is also fine if a patient articulates only a few values initially. It also may be
that they have more than one goal linked to a single value.
• Sometimes patients delve immediately into their health or bothersome symptoms.
This can be a good place to start, as you will learn much about their care preferences
from what they describe. Learning about their perception of their health status and
their treatment burden is critical in identifying care preferences. Pay attention to the
health care burden the patient describes. Note this information for the later step (step
3) where you assist the patient in identifying care preferences. Burdens they describe
could be tasks they would prefer not to do.
• If the patient does start with their health care burden or problems, it is important to
remember that their health outcome goals are based on their values—what matters
most to them. You do want to eventually refocus the conversation with the patient
back to expressing their values, you may want to use the following prompts:
Prompts: “What would you be doing if you didn’t have to do X or didn’t have this
problem?” or
“In what ways do your health conditions and treatments limit your ability to do
what matters most to you?”
• During this exercise, you might obtain clues about tradeoffs they are facing. Make a
mental note, as this will help you identify goals and care preferences later.
• If you feel the patient is telling you what they think you want to hear:
Prompt: “I want to make sure I understand what matters to you, not what others
(like your loved ones or health care team) think you should care about. There are
no right or wrong answers to these questions. What’s most important is that you
choose things that are heartfelt and meaningful to you.’

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 STEP 2: PAGE 8

Direct the patient to turn to page 8 to begin step 2. Summarize the bullet
points on page 8.

“In this step, we are

going to understand
your health goals, or
what you want to be
able to do. Then, we
are going to discuss
what’s going well
with your healthcare
and what’s not going
so well.”

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 STEP 2: PAGE 9

Explain that in order to set goals, we need to know what we mean by health goals, and
what good goals look like. You may be more familiar with the SMART goal framework
(specific, measurable, actionable, realistic, and time-bound)—but we have found it neces-
sary to simplify this for patients. Thus, we use the bullet points below.

“First, we need to
understand what we mean
by goals, and what a good
health goal looks like. A
health goal can be
something you want to
keep doing, or something
you would like to be able
to do more of. For
example, a health goal
might be something like:
‘Be able to walk enough so
I can go to family outings.’
or ‘Manage my arthritis
enough to keep knitting.’
In addition to having goals
based on our values, we
also want goals to be
realistic and specific so
that your health care team
can work with you on
making sure your
healthcare is focused on
achieving that goal. And
it’s OK if these goals
change over time—we will
be flexible as your health
changes.”

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 STEP 2: PAGE 10

We start here by reviewing values from the prior step and asking the patient to identify activ-
ities that they already do or would like to be able to do to live out that value. This may not
yet take the shape of a true SMART goal, and that’s OK—at the bottom of the page are
prompts to facilitate a discussion about whether they are currently able to do that activity,
and whether it’s specific and realistic. This discussion should help shape the goal into a more
’SMART’ format. For example, a patient who identifies that family is an important value for
him might state that he wants to be able to play with his grandchildren. Through discussion,
he may identify that he means being able to play their favorite videogames (a more specific
goal) and that this is realistic for him given his health.

“We’ve already talked about

what matters most to you in
your life. Based on what you
said last time we met, that was
(summarize). Now let’s talk
more about how you would
show that you are living out
those important things. Let’s
identify activities that you can
do or want to be able to do that
reflect what is important to
you.”

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 STEP 2: PAGE 11

By this point, you should have been able to identify goals that are meaningful (connected
to values) and realistic. We are not setting goals in the behavioral sense but rather identi-
fying health outcomes that patients want to achieve that will be used in decision making
between patients and their clinicians. On this page, patients can write down their revised
goals, after any discussion from the prior page about whether their goals are specific, real-
istic, etc. These goals should be actionable health goals that will aid their health care team
in prioritizing treatment. Again, Dave provides an example. At the bottom of the page, we
ask patients to elaborate about how their health gets in the way of doing these goals.

“Given everything we’ve

talked about, let’s set two
specific, realistic goals for
things you want to be able to
do. You can see Dave’s exam-
ple here.”
“Now, does your health get in
the way of those goals?
How?”

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Tips for Goal Setting:
• It is important to make sure the patient’s goals are SMART! (specific, measurable,
actionable, realistic, time-bound). To do so, you may ask questions like “What would
you do specifically? For how long? How often?”
• To determine if goals are realistic, review them briefly with the patient. Try asking
“When was the last time you were able to do this activity? Or “Maybe we need to
work our way up to that—what do you think is a good place to start?”
• If a patient has difficulty articulating goals, provide examples of meaningful goals
(Example: if the value is being physically active, the goal might be walking for 20
minutes/day); or, return back to their values and ask them how they would like to
live that value: “You told me that your relationship with your grandchildren is very
important to you…what kinds of activities do you do together or would like to be
able to do together, if your health let you?”
• If a patient sets an unrealistic goal, find out why they want to do those things—what
value is that tapping? And set a different goal that addresses the same desire or
value. For example, if a patient sets the unrealistic goal of taking the grandchildren
to the park (patient is housebound), a different goal that addresses the same value
might be being able to play boardgames or read with the grandchildren.
• Goals should always be linked to values. Facilitators can ask about how a goal is
related to the values previously identified.
• If the patient’s goals are about avoiding a feeling, condition, or state (e.g., “Stop worrying
that I will be in pain if I leave my home,” or “I don’t want to feel tired “), work to revise
these goals to become more action- or outcome-based goals. For example, ask “What
would you be doing more of if you were not worrying about pain?” “What would you
do more of if you weren’t so tired?”
• Goals don’t have to be about starting a new behavior. They can also be aimed at
maintaining a current behavior: “Your goals for the future may involve continuing to
do what you currently do in your daily life, or may involve expanding what you are
able to do. What do you already do that you’d like to keep doing in the future? What
do you not do now, but would like to start doing in the future?”
• The right-hand side of the chart walks through the effects of health on the patient’s
ability to achieve their goals. This can provide valuable information about care
preferences and tradeoffs that will be used in step 3. Try asking: “How does your health
get in the way of… X (goal)?”

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 STEP 2: PAGE 12

Now, we discuss how the patient’s healthcare is helping and not helping meet those goals.
Assess for healthcare burden and healthcare preferences—concrete information that can be
communicated back to their health care team to shape the future care they receive. Empha-
size that there are no right or wrong answers—their preferences are their own. Remem-
ber—it’s very important for the health care team to understand patients’ honest statements
about what is helpful and what is burdensome about their care. These care preferences are
often what determines how adherent patients are to the healthcare team’s recommenda-
tions. If the team is worried about patient adherence or patient motivation, then they have
to have a compassionate understanding of patients’ care preferences. On p. 12, we start
with asking about what parts of their healthcare are working. Go through each category of
tasks and ask which they think is working well or helps them achieve their health goals.

“We want your health care

to help you do the things
that matter to you, so let’s
talk about what parts of
your healthcare help you
achieve your goals. For
example, maybe you are
really noticing that a
certain medicine helps you
feel better, which gives
you the energy that you
need to do what is
important to you.”
“Which parts of your
health and healthcare are
going well? ”
“What things are really
helping you?”

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 STEP 2: PAGE 13

On this page, we discuss the opposite side of the coin—parts of their healthcare that are
NOT helping them meet their goals. Assess for healthcare burden and healthcare prefer-
ences—concrete information that can be communicated back to their health care team to
shape the future care they receive. Go through each category of tasks and ask which parts of
their healthcare they don’t think helps or is difficult, burdensome, or causes problems. Some-
times patients are worried about being seen as non-compliant if they object to a treatment.
The facilitator can alleviate this concern by acknowledging it: “This conversation is about
what really helps you—it’s OK to tell me what you really think.” At the end of this discussion,
briefly discuss how it will be important to communicate this information back to their health
care team so that they can receive care that works for them.

“Is there anything in your

healthcare that is making it
difficult or not helping you meet
your goals?”
“Which parts are burdensome or
bothersome?”
“Are there any healthcare
activities that you think aren’t
helping you?”
“Do you feel that self-care tasks
or treatment gets in the way of
what you look forward to
doing?”
To spur discussion, you may need
to ask specific questions about
each area, such as: “What time
of day do you take your
medicines? Does anyone help
you with them? Are you noticing
any side effects? Do you take
insulin or check your blood
sugar? How is that going? How
often do you have medical
appointments? Are you on a
special diet? How is that going?”

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 STEP 3: PAGE 14

Direct the patient to turn to page 14 to begin step 3. Summarize the bullet points on
page 14. The purpose of this step is to understand what is burdensome or bothersome
to the patient, so that this information can be funneled back to their clinicians, who can
engage in shared decision-making about which treatments are worth it to the patient,
given the patient’s goals.

“In this step, we are

going to spend some
more time talking
about balancing the
benefits and burdens
of your healthcare, or
what we call health
tradeoffs.”

21
 STEP 3: PAGE 15

On this page you will explain the concept of the benefits and burdens of healthcare.
Ideally, you will provide one or two examples (see box below). You can also ask the pa-
tient for any examples that come to mind in their life.

“I want to talk about the

benefits and burdens of
healthcare. Here’s one example:
A patient with diabetes may
need to reduce how many
sweets they eat. That’s the
burden. But reducing sweets
may keep them healthier longer.
That’s the benefit. Everyone gets
to decide for themselves which
benefits are worth the burdens.
We call that a tradeoff.”
“Another example is that a
patient with sleeping problems
may take a sleeping pill that
does help them sleep (benefit)
but makes them groggy the next
morning (burden). ”
“It would be great if you could
reach your goals without
treatments that are hard or
uncomfortable, but that is not
always possible, so you may
have choices to make about
which treatments are worth the
added burden.”
“Your health care team may not
know how much certain burdens
bother you. If they understand
better, they can discuss the pros
and cons and make treatment
decisions with you.”
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 STEP 3: PAGE 16

After exploring the benefits and burdens they noticed on the prior page, here we are formal-
izing the health care activities patients are willing to do and prefer not to do. Ask systemati-
cally about each possible type of tradeoff (eg, medications, appointments, self-care activities
like diet or blood pressure monitoring, etc). This information will be funneled back to the pa-
tient’s health care team to help them understand the patient’s preferences.
When treatment burden has been discussed, then it can be used as an opportunity to assess
the individual’s understanding of what that treatment is supposed to do for them and what
it would mean if they were no longer doing it or doing less of it. For example, not wanting
to check blood sugars may result in a hypoglycemic reaction, but they may be willing to take
this risk to avoid the hassle of blood sugar checks. As these situations arise in your visits, try
to point them out to the patient and see if they recognize these tradeoffs. These will be
helpful points for their health care team to help them navigate care choices.

“It’s important to decide what you

are willing put up with in order to get
what matters most to you.
It’s also important for your health
care team to know what is most
important to you, and what you are
willing to put up with, so you can
make the best decisions together.
Given what we’ve talked about so
far, what parts of your medical care
are you willing to do even if it causes
some burden? First, think of
medicines. Now, what about diet,
other types of treatment,
appointments, etc.?
And what parts of your medical care
do you think are not worth the added
burden? What health care activities
would you prefer not to do?
Tradeoffs can change over time as
things change in your life, so let your
team know if things are becoming
too much.”
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 STEP 4: PAGE 17

Direct the patient to turn to page 17 to begin step 4.

“In this step, we are

going to talk about
how to communicate
your health care
preferences when
talking with your
health care team, and
how to be an active
partner in making
health care decisions.
We will create a
summary sheet of
everything we’ve
talked about to bring
to your next primary
care appointment,
and practice how to
start that
conversation.”

24
 STEP 4: PAGE 18

Discuss with patients that knowing what matters most helps their health care team recom-
mend the care and treatments that are most focused on what they want from their health
care. This will help ensure that their care is aligned with both the health outcomes that
matter most to them and with health care tasks that they are willing and able to do to
achieve these outcomes.

“Your health care team

needs to know what is
most important to you
so you can work
together to make the
best decisions for you.
We are hearing from
many patients that
doing everything they
are supposed to do is
too burdensome. When
you share your goals
with your care team,
you and your team can
design care that
supports your goals,
and provide the least
burdensome care that
can help you be as
healthy as possible. It
will also help us to
make sure that all your
providers are on the
same page in regards
to caring for your
multiple conditions.”

25
 STEP 4: PAGE 19

Many people feel intimidated to bring up their opinions or ask questions when they have
medical appointments. They may not know they can discuss their health goals and care prefer-
ences with their clinicians or that their clinicians want to know these. It is important to encour-
age the patient to share all the things they’ve identified in this process with their health care
team. Additionally, you may ask extra questions to assess whether they have any difficulties
speaking up (like embarrassment, being deferential, not understanding medical terms) or
whether there are difficulties in patient-provider communication that could be addressed.

“Here are some tips for

good communication
with your health care
team. We want you to
be able to communicate
openly and be a part of
your health care team.
Before we go through
these, how comfortable
do you feel talking
openly with your team
about your goals and
preferences?”

Tip:
If a patient is struggling
with communication,
consider talking through
with the patient an
important conversation
they need to have with
their health care team.
You may suggest wording
choices to help them
convey their meaning
effectively.

26
 STEP 4: PAGE 21
This page is designed as a ‘tear out’ sheet for the patient to hand to the health care team
at their next appointment. Although the information will also be placed in the patient’s
electronic medical record, this sheet can remind both patients and providers and help
spark conversation about the patient’s goals and care preferences. Guide them through
completing this so that the information will be useable for their health care team. If nec-
essary, you can go through the Dave example on p. 20.

“Now we are going to create a sheet

to bring to your next appointment to
summarize the things we’ve
discussed, to start a conversation
with your team. First, they need to
know your goals.
Next, it asks ‘The one thing I want
most to work on is___ so I can___:’
For example, you might say things
like ‘The one thing I want most to
work on is my shortness of breath, so
I can play with my grandkids.’ Or you
might say ‘The one thing I want most
to work on is taking fewer medicines,
so I can worry less about mixing
them up.’
Next, we are going to list the things
you are willing and able to do.
Finally, we will list the things you are
unable to do, cause problems, or are
not helpful. For example, you might
put things like ‘It’s not helpful to add
more medications because I already
have trouble keeping track of them.’
or “It causes problems to have too
many appointments because my
daughter has to take off work to
drive me.”
27
Tips:
• Introducing this page:
• "Often times when we go to medical appointments we are focused on what's
wrong with us or what we can't do. Communicating what you can do and
what your goals are will help you and your health care team create care plans
that support your goals."
• Tell patients that this is a comprehensive summary of their health goals and
health care preferences, and that it can be used as a tool to facilitate
conversation with clinicians and loved ones.
• Health Goals section:
• The goals may be pulled from page 12, or may need to be slightly revised based
on your conversations.
• Health Care Preferences section:
• Make sure the second item, the one labeled ‘The one thing I want most to
work on’ is something potentially actionable or realistic. For example, it may
not be realistic to expect to completely eliminate pain, and asking for that may
shut down the conversation with their team. If pain is the issue, try to phrase it
as ‘The one thing I want most to work on is managing my pain so I can do
(Activity X).’
• Encourage the patient to be completely honest. In the past, they may have
agreed to certain treatments but not followed through on those (like taking
certain medications) because they had difficulty telling their health care team
that the benefits to them didn’t outweigh the burdens. This is an opportunity
to have input into discontinuing parts of the treatment plan they don’t think
are worth it, and to focus the health care team’s attention on the functional
goals that are most important to them (mobility, use of their hands, etc). Or
they may find out that this treatment is likely to help them achieve their
outcome goals so they need to decide if this outcome is important enough to
put up with the burden.
• Afterwards: You should discuss how they might bring up these topics with their
health care team or even role play what they might say to communicate this
information. You might say something like “Let's practice together! Take goal #1 .
How might you tell your health care providers about this?”
• You may also need to problem solve how they might remember to bring this to
their next appointment. For example, could they keep a copy with the
appointment reminder card? Or take a picture with their phone so they have it on
hand when needed?

28
 STEP 4: PAGE 22

Conveniently located on the back of the ‘tear out’ sheet (page 21 in the patient manual) is a
list of some example language to use when starting this conversation with their provider. You
can review these in session with the patient and encourage them to select a few that might
apply. Patients can practice the wording in session or with a family member. Some tips for this
conversation are presented on the next page.

29
Tips:
• Health care providers and teams respond to specific patient “asks and tells”. For
example, help your patients learn to phrase things like: “Since I want to be able to
continue to go kayaking, will this medication cause dizziness?” These statements
emphasize the importance of linking the health outcome goals to care
preferences—The one thing I want most to work on is this so that I can…
• Some patients need permission to discuss bothersome care, including side effects
of medications, multiple clinician visits, unwanted or unnecessary procedures, and
how certain care recommendations can affect current functioning. You can help
provide that permission by reassuring the patient that their health care team
wants to know these to be able to work towards a mutually agreeable solution.
• The patient’s perception of the information that their clinicians want to know may
be narrow. As a goals facilitator we should reinforce that clinicians want to know
what matters most to the patient to determine if their current care plan is helping
or hindering achievement of what matters most to them.
• Encourage the patient to be as blatant and deliberate in statements as their
comfort allows. Clinicians cannot act on subtleties. Through transparency, the
patient-clinician partnership can be strengthened and space can be created for the
patient to be candid with their health care team. Some example language might
be: “Your health care team wants to be able to link your care with your health
goals, and they can only do that if they know what parts of your health care may
be bothersome or getting in the way of achieving your goals.” or “Your health
care team wants to know what matters most to you especially if your quality of
life and current function are what you are concerned about.”

30
 AFTER YOUR PATIENT SESSION: EHR TEMPLATE

After completing page 21 with the patient, you will also complete a note in the patient’s elec-
tronic medical record documenting this conversation. This helps notify the patient’s medical
team of their goals and healthcare preferences, so that the team can discuss these with the
patient and take these into account. Notify or route the document to the patient’s care team.

Based on facilitator’s
impression of patient

Values from patient

manual page 7

SMART Goals:
from patient page 11

From patient page 12

From patient page 13

Specific Ask for

health care team

Your name and

contact information

31
 STEP 5: PAGE 23

This is an optional step for patients who anticipate an upcoming change in their health or
who have recently experienced a change that significantly impacted their health, function-
ing, or life expectancy. Common examples are surgeries, amputations, new diagnoses of
cancer, etc. We recognize that as patients’ health status changes, so too might their goals
and preferences. For example, a patient who was previously focused on maintaining inde-
pendence but recently received a lung cancer diagnosis may decide that freedom from
healthcare burdens and minimizing suffering are now his priority. This step gives them a
chance to discuss changes in their goals and preference and to communicate those to their
health care team.

“In this step, we will

discuss any changes in
your life or health,
how your goals may
have changed, and
create an updated
summary for your
health care team.”

32
 STEP 5: PAGE 24

This section starts with summarizing the recent or upcoming change(s). You can discuss
with the patient that as your health changes, so too can your values, goals, and health
care preferences.

33
 STEP 5: PAGE 25

This page walks the patient through 1) how changes have affected or will affect
their ability to live their goals, 2) whether their goals have changed, and 3) how
their preferences have changed.

34
Tips:
 Patients may also set new goals in this process. For example, if the
recent change was a stroke, possible new goals may involve increasing
ability to do self-care like bathing or dressing.
 Gently encourage the patient to be realistic. It can be hard to accept
that goals that may have been realistic in the past may no longer be
realistic. Large changes in functioning or life expectancy may suggest
that it is appropriate to ‘step down’ the intensity of managing certain
chronic diseases and focus instead on quality of life. For example, a
patient with diabetes and terminal cancer may appropriately decide to
have more flexibility in eating what they want.
 Encourage the patient to involve friends and family members. However,
sometimes family members have different goals and want care that is
inconsistent with patients’ own goals and care preferences. Remember,
the purpose of this intervention is to align healthcare with the patient’s
goals, not the family’s goals. One way this intervention may help is by
making the patient’s own preferences clear to the family members.

35 © Mary Tinetti, Aanand Naik, Lilian Dindo, 2017

36 © Mary Tinetti, Aanand Naik, Lilian Dindo, 2017