Advance care planning 1-Think about the treatment you desire andwhom you share your thoughts with -Table of Contents

How to use the patient decision aid ... 1
STEP 1: What treatment would you like to receive?
• Whom can you share your thoughts with? ... 2
STEP 2: Think about what kind of treatment you wish to receive... 3• About the Proxy decision-maker (trustworthy person) ... 4• Discretionary power... 5• What do you value and desire more? ...6
Step 3: Understand the characteristics of the options(Pros and Cons) ... 9
Step 4: Identify your priorities and decisions ... 11
STEP 5: Decide ... 13
SUPPLEMENT: Voices of Experienced People andHealthcare Professionals ... 15

How to use the patient decision aidStructureThis patient decision aid(PtDA) consists of two books.

PtDA_A：-Think about the treatment you desire andwhom you share your thoughts with PtDA_B：-Think about the treatment you hope forif you have difficulty recovering First, read Guide A while checking and writing.
STEP 5 Once you have made your decision, step up to PtDA B.
Do not worry about consulting your healthcare provider
if you feel like doing so.

1

STEP
１

What treatment would you like to receive?
Whom can you share your thoughts with?

Why do you not take the opportunity of surgery and treatment to makea plan for your future life and how to deal with the disease?
If you cannot decide for yourself, or if your life is in crisis, what kind oftreatment would you like to receive?
This guide is designed to help you think about the treatment you want toreceive in the event of a surgery.
It is also designed to help you decide whether you want to share it withyour healthcare provider and the people you trust (surrogate decisionmakers) .
Let us read this guide as you write.

Option1: Do not communicate your ACP’s wishes to surrogate
decision-makers and healthcare providers.
2: Communicate your ACP's wishes to surrogate decisionmakers and healthcare practitioners.

2

STEP
Advance care plannings’ process
2 -Think about what kind of treatment you wish to receive-

１

While you are undergoing treatment, let us think about whether
you are having a hard time living.
What is important to your life?

2Is there any treatment that you do not want to receive?
Do you think about what it would be like to die, and what it
would be like to have this sort of treatment at end of life?

the condition of being
able o take care of oneself

having a better quality of life
receiving every life-prolonging
treatment possible

not burdening one’s family

3

4

Next, think about whom you can trust and who can discuss
the treatment and care you receive on behalf of yourself,
in a crisis.
*These people are called "surrogate decision-makers."

You can also discuss the treatment you want or do not wantwith a surrogate decision-maker or healthcare provider.
This choice can be changed even after you have made adecision, depending on your situation.
If you have any questions, you can be in touch with yourhealthcare providers.
3

STEP
2

About the Proxy decision-maker(trustworthy person).

What is the role of the surrogate decision-maker (trusting person)?
When you cannot make decisions about the treatment you want rely ona healthcare provider as well as the person who is responsible for thinking
and making decisions about the treatment you want to receive.
The surrogate decision-maker has no legal rights and is not involved in
the division of property. Who understands your way of thinking and living
the best?
In the event of an emergency, you will select a person who you believe
will decide to treat you the way you want to be treated.

SpouseFriendChild

ParentSibling

Healthcare
providerPartner

Relative

You can have more than one surrogate decision-maker.
For example, you can choose whether you want your three children to
discuss and decide, or your wife and daughter to decide.
Who is your surrogate decision-maker? Please fill it out.
Surrogate decision-maker:

4

STEP
2

How much do you rely on surrogate
decision-makers?

What is discretion?
If you tell the surrogate decision-maker about your treatment, the decision
will not always go smoothly. In particular, the surrogate decision-maker is
at a loss when there is a difference between the best treatment or care foryou according to the surrogate decision-maker and the healthcare
provider. Therefore, it is also a good idea to decide the extent of yoursurrogate decision-maker’s deciding power.
For example, consider the following:

Check
What do you want to do when your decision-making ability is lost
and the surrogate decision-maker or healthcare provider has adifferent opinion regarding the treatment?
I want you to dowhat I wanted.

Even if the treatment isdifferent from what
I wanted, it can bedecided throughdiscussion between
the healthcare
provider and thesurrogate decision-maker.

Based on the treatment
I had desired, I would
like the healthcare
provider and thesurrogate
decision-maker todiscuss and decide.

CheckI am not sure.
I do not know.

Check5CheckCheckSTEP2

What do you value and desire more?

For example, let us consider the following .

CheckIf you have limited time to live, what is important to you among thefollowing: (Multiple answers allowed)
Being able to continue work andDoing what I desiresocial tasks
Not being a burden on my family

Being able to take care of myself

Having no financial problems withmy family
The state of being near family orfriends

Being financially secure
Absence of pain or distress
Other（）Reasons…

What makes you feel that it could be difficult to live in a particularsituation from the following: (Multiple answers allowed)
I'm in a serious condition and I cannot
wake up and express my feelings topeople around me.

Not being able to control my body

Being unable to take care of myself

I cannot avoid myself

Being in continuous and incurable
pain

Being dependent on medicalequipment. (e.g., ventilator)

Being unable to eat or drink bymyself

I do not Know

Other()
6

What is the predicted course of the disease if it worsens duringhospitalization?
I want to know all the information(I want to make my own decisions as much as I can)If it is getting worse, I do not want to know
I do not know
Other ()

I have the following plans and pleasures that I want to pursue afterI am discharged.
Return to the job (when, timing)
TravelOther (

Other than that, write down how you think and feel.

7Role at home)

8

STEP
3

Understand the characteristics of the option
options (Pros and Cons).

In Step 3, you will consider your options in case your life is in danger.
Compare the pros and cons of discussing or not discussing yourtreatment with surrogate decision-makers before surgery.

Discussion

Not discussion

Your desires are reflected in the treatment.
8 out of 10 surrogate decision-makers
1 ~ 2 of the 10 surrogate decisionfully understood the patient's desire for makers fully understood the patient'streatment.
desire for treatment.

About 86% of thepatients‘ autonomy
was respected until theend of their lives.

About 30% of
patients' autonomy
was respected until
the end of their lives.

86%

30%

Anxiety you felt before surgery
Before surgery, you should consider how you would like to be treated in a lifethreatening situation.
We compared patients who thought about it with those who didn't. Results
revealed that there is no difference in the degree of anxiety in both patients.
However, in some cases, ACP before surgery may increase anxiety.

9STEP
3

Understand the characteristics of the(Pros and Cons).

If you are unable to make your decision, the healthcare providers andsurrogate decision-makers, who are considering treatment for you in the ICU,
may experience difficulty or conflict regarding that decision.
・12.1% of conflicts within families.
・Conflicts between healthcare providers and surrogate decision-makers arereported to be 57.3%.

Discussion

Not discussion

Preoperative anxiety of surrogate decision-makers. * For the first time

When anxiety is scored,
it is reported to be 43/100.

When anxiety is scored, it isreported to be 39/100.

39

43

The conflict that the surrogate decision-maker has after making surrogate decisions about
your treatment.

It scored 19.5 out of 100.

good

0It scored 24.3 out of 100.

goodhighly conflicted255075100

0highly conflicted255075100Did the surrogate decision-makers make decisions in accordance with your preferences?
* Degree of confidence

It was 5-9 out of 10.

It was 8-10 out of 10.

02468100

median2468

median
1010

STEP
4

Examine what is most important to you

Next, you will examine what is most important to you.
For each item, check the one that best matches yourpreferences and see which way your value is tilted.

CheckDiscussion

Not discussion

1. Think for yourself about the treatment you want or do not want
before surgery.

very importantneither

not matter at all

2. Having your surrogate decision-maker know about the treatment
you want or do not want before surgery.

very importantneither

not matter at all

3. Making your healthcare provider aware of the treatments you may or
may not want to receive before surgery.

very importantneither11

not matter at all

STEP
4

Examine what is most important to you

Discussion

Not discussion

4. Sharing with the surrogate decision-maker information about the treatment
you want or do not want before surgery may increase the surrogate
decision-maker's anxiety and worry.

not matter at allneithervery important

5. That surrogate decision-makers may feel burdened by making treatment
decisions on your behalf after surgery.

very importantneither

not matter at all

6. When your treatment is not going well after surgery, your healthcare
provider should give you any information.

very importantneither12

not matter at all

STEP
5Decision

In the previous pages, you have considered what you value and would like todecide.
Now let us check how ready you are to decide.

CheckDo you know the benefits and risks of each option?

YesNoDo you know the benefits and risks of each option?

Yes

NoAre you clear about which benefits and risks matter most to you?

Yes

No

Do you have enough support and advice to make a choice?

Yes

No

If any one of the responses to the four items above is "no," you may not be
ready to decide yet. Is there anything you want to do before you decide ?
13

STEP
5Decision

Write down your decision,
Date：

Do not communicate your ACP’s wishes to surrogate
decision-makers and healthcare providers.

Communicate your ACP's wishes to surrogate decisionmakers and healthcare practitioners.

14SUPPLEMENT：Let us take a look at the experiences of patients who have been admitted
to the intensive care unit (ICU) and treated perioperative period.

15

Let us look at the experience of other patients.
(From decision of surgery to surgery)
Let us imagine by referring to the experiences of those who have been admitted
to the ICU after surgery.
Patients who never thought that their lives could have been in danger

The date of the surgery was decided, so I didn't havemuch time before I was hospitalized. I had a young child,so I prepared so that my family wouldn't be in trouble
while I was in the hospital.
It was my 2nd surgery, so I didn't feel nervous.
After I was admitted and discharged from the hospital,
I worked on my schedule and plans until I returned towork, and mainly adjusted my work accordingly.
I was sorting out what I could and couldn't do while I
was in the hospital.
Patients who thought they could face a life crisis

I thought I might die, so I expressed my feelings to myfamily. If I was going to be bedridden or I was going tobe a vegetative man, let me die.
It's more like, I told them what I thought rather than
discussing it.

My physician informed me that there was a highrisk of complications after surgery, so I thought
about my inheritance and insurance first.
I hoped that if bad happens to me, my family would
not be in any trouble.
16

What did patients consider and express about
the crisis of their lives?
Patients who discussed with one's family and loved ones

I had been informed by my physicians that there
was a high risk of surgical complications, so myfamily was not supportive of the surgery. However,
it is my life. I expressed my intention to my family
that I decided to take risks. And I told my family thatI asked them if there was an accident. So, on theopposite, I prepared myself for surgery.
Patients whose family was anxious and found it difficult to discuss with them

When I informed my wife of the disease, shewas already crying. I couldn't talk to my wife
about the future or the prospect of her death.
So, I wrote a farewell note.
Afterward, I told my wife to look at it if any
problems arise.

Patients who lived alone and thought they had no one to discuss withI have only one daughter. I told my daughter not to
do life-prolonging treatment.
In fact, my heartbeat stopped and I almost died. Atthat time, I was unconscious and I don't remember
anything, but my daughter and the physician
seemed to think of a treatment together based on
my hope for treatment.
17

What do healthcare providers want to know?
What do you think?
Healthcare providers have different thoughts and opinions
No treatment provides a 100%
benefit. Knowing the patient'svalues and treatment
preferences in advance will be
important in the treatment
plan.

It is difficult to say to a patient
who is undergoing surgery
positively, "What if your life isin danger?" I think I makepatients nervous. As ahealthcare provider, I have theresponsibility to save patientsat all times.

I want the patient to recoverwell and be discharged. But I
can't say it's 100% good. At thevery least, when patients can nolonger make their decisions, wewant to provide them with thetreatment and care they desire.

I expect the patient to be very
anxious when they are informed anddecide on the surgery. When I discuss
ACP, I think my anxiety and worry
become more intense.
I don't want to discuss it because
I'm worried about the mental healthof patients and their families.

Information the healthcare provider wants to know
Are there any daily activities that youvalue (e.g., eating by yourself or not
being bedridden)?

Is there any event you want to attend?
(Weddings, entrance ceremonies forgrandchildren, etc.)

What are your wishes and pleasure inlife from now on?

Who is your surrogate decision-maker?
Is there any treatment you do not wantto receive?
18Life after discharge

I thought about the pace of going to work as myphysical condition recovered.
It is encouraging that I am getting better slowly
and returning to my society. I'm doing my best,
saying, “I'm at ○% return to the community.”
Words from my friends also encourage me.

I was also worried when my physician
informed me that I might die or that there wasa high probability of such complications.
But now, I can speak like this and do what Iwant to do.
I'm happy to be alive.

I had cancer, so the treatment continued after thesurgery. I was treated with anti-cancer drugs andhad two surgeries, and I'm still doing well. Afterthe first surgery, I didn't feel sick and was able toreturn to work right away. What a blessing.

I returned to my job about a week after I wasdischarged. However, my body and mind were
not ready. It didn't work at all because I tooktime off from work. What I can say now is thatit takes more time to return to the daily life
before the surgery after I leave the hospitalthan the surgery . It means that it was harderthan the surgery after discharges' life.
19

Advice from surgery after discharges’ life

Prior to the surgery, I seriously considered mylife. I think I was able to undergo a high-risk
surgery because I thought about what I value anddesire. I discussed with my physician until I wassatisfied, and then I discussed with my family, andfinally I decided by myself. I think that's important.

I think people have individual choices. I'm the type of
person who chooses based on my intuition. Because I
believed in my decision, I trusted myself and myphysician, and entrusted my life. I think the mostimportant thing is to be able to convince myself that
it is all right.

I couldn't understand the detailed explanationof the surgery. Nor could I choose what I
wanted to do. It was just that I trusted thehealthcare providers. I think some people getanxious when they think about various things.
I think you should value what you can believe.

20

References
１

Health, Labour and Welfare Ministry（2018) .Medical care in the final stage of one's desired life.
https://www.mhlw.go.jp/stf/seisakunitsuite/bunya/kenkou̲iryou/iryou/saisyu̲iryou/index.html

２Kizawa Y. (2017). Project to improve medical systems in the final stages of life.
"Advanced Care Planning: Discussion on future treatment and care”

３Song, M.K. et al.(2005). A randomized controlled trial to improve advance care planning among
patients undergoing cardiac surgery. Med Care, 43(10), 1049-53.

４ Chiarchiaro, J., et al.(2015). Perior Advance Care Planning Is Associated with Less Decisional Conflictamong Surrogates for Critically Ill Patients. Ann Am thorac, 12(10), 1528-33.
５ Willson, M.K., et al.(2015). A Video to improve patient and surrogate understanding of cardiopulmonary
resuscitation choices in the ICU: a randomized controlled trial. Crit Care Med, 43(3), 621-9.
６ Andreu, P., et al.(2018). Impact of a stay in the intensive care unit on the preparation of Advance
Directives: Descriptive, exploratory, qualitative study. Anaeth Crit Care Pain Med.37(2), 113-9.
7 Carmen. H.M., et al(2014). Efficacy of Advance Care Planning: A Systematic Review and Meta-Analysis.
JAMDA, 15, 477-489.
8Studdert, D.M. et al.(2003). Conflict in the care of patients with prolonged stay in the ICU: types, sources,and predictors. Intensive Care Med. 29(9).1489-97.

9．Nakayama K & Iwamoto T.（2012）. Patient-centered decision support -care to make a convincing decision-Develop by Kanako YAMAMOTO（St. Lukeʻs International University, RN, CNS, Ph.D.）
Illustrator: taneko
Created：July 10, 2020
Revised：March 10, 2021 (This PtDA is periodically reviewed and revised.)This PtDA is supported by a JSPS 19K19613.
©2021, K Yamamoto.