Advance care planning 2- Think about the treatment you hope forif you have difficulty recovering -STEP1

Think about the treatment you hope forif you have difficulty recovering

This PtDA is designed to help you plan ahead if you are in a situation
where recovery is difficult during the course of treatment and you want tomake sure that you are receiving the best treatment you can until the endof your life, or if you want to limit your treatment to switching treatment
goals.
As you read through the PtDA, try to clear your mind based on the options
that follow.

Option1 Continue to receive all treatment regardless of the survival rate.
2 Discontinue life-sustaining treatment when the survival rate
decreases.

When you are in an ICU or when your condition worsens, change happensvery quickly. The time to decide treatment is very short, and it is difficult tomake a careful decision. At the end of life, when recovery is considereddifficult, 70% of patients are reported to be unable to make decisions on
their own.

1Think about your wish for treatment
Option1
We will provide you with all kinds of treatments so that you canlive as long as possible. On the other hand, you may have to betreated differently than you wish.

Option2This means switching to treatment that focuses on relieving your pain andimproving quality of life. However, this can shorten your time.

Undergo full treatment
Benefit・You may be able to live as long as
possible until your heart and breathingstop.
・Your long life will keep your family andloved ones with you for as long as
possible.

Risk・You cannot move freely because you

are connected to a medical device.
In addition, there is a high possibility
that your consciousness will notrecover even after treatment.
・This treatment may not be the way
you wish to live.
2

Discontinue treatment that may
prolong lifeBenefit

・If you are unlikely to recover, you can
avoid futile treatment.
・If following your wishes are no longer
possible, they will be reflected andrespected as much as possible.

Risk

・This treatment may shorten yourlifetime.
・Your family and loved ones would
spend less time with you.

STEP
2

What is a physical condition with a low
survival rate?

It refers to any situation where the lifesaving rate becomes low.
One case can be postoperative complications which refers to complications
after surgery that can cause some of your organs to malfunction.
Furthermore, a condition in which the function of two or more organs
is reduced is called multi-organ failure.
Physical condition
Brain &Nerve

Circulation

If you have a stroke or bleeding, your cognitive function may deteriorate andyou may not regain consciousness. The hands and feet may remain paralyzed.
If your heart and blood vessels function poorly, you may not be able to maintainyour blood pressure and pulse. This leads to a decline in the function of organs
such as the kidneys, liver, and intestine.

Respiratory

There are cases where water accumulates in the lungs, pneumonia, or the lungs
collapse with sputum. You cannot take in oxygen by yourself, or carbon dioxide
may not be emitted, or both. In such cases, an oxygen mask or a ventilator isworn.

Liver

Poor circulation or poor liver function due to various reasons can lead tojaundice and accumulation of toxins in the body, which leads to life-threatening
problems.
Your body may hold water, and waste materials in your blood may not be able

Kidney to pass out of your body. Electrolyte abnormalities can be life threatening.
Blood

If the blood fails to circulate, blood tends to clot throughout the body (clotformation), and if a wound forms, it is difficult to stop the bleeding and bleeding
to death is likely.
If you get infected and bacteria circulates in the bloodstream, circulation cannot

Other be maintained. This can lead to dysfunction of various organs.
Dailylife

When multiple organ damage progresses and the lifesaving rate is low, daily
activities become impossible. For example, you may not be able to go to thebathroom, eat, or walk by yourself.

3

STEP
2

ICU treatment

In order for you to survive as long as possible, you may receive the following
treatment in the ICU. This treatment can be brief or prolonged until your illness orsymptoms improve.
Devices needed to survive. (If it is stopped, it is immediately fatal.)

Ventilator

Supplementary circulation device

If you are unable to breathe or inadequately
breathing on your own, the machine will help
you breathe by inserting a tube into yourmouth or throat. *In some cases, a mouth ornose mask can be used to provide a ventilator.

It is applied when your heart and lungfunction deteriorate and you cannot maintaincirculation and breathing. A tube is inserted
through the groin or neck to help circulation
and breathing.

Supplementary device for living. (If you stop it, it's not immediately fatal.)

DialysisIf kidney or liver funcJon
deteriorates, dialysis isperformed at the bedside.
A catheter is inserted
through your groin andneck.

Seda%ve and analgesics

Infusions, blood transfusion,and nutrition

If a drain or tube is inserted,
painkillers or drugs thatcause sleepiness may beused.

You cannot drink water or eat.
In that case, an infusion will begiven to you. Fluid andnutrition may also be given
through a tube in the nose orabdomen. You may also
receive a blood transfusion.

4

STEP
2

What is Cardiopulmonary Resuscitation?

If the heart stops during treatment, cardiopulmonary resuscitation (CPR) is performed.
This is a supplementary procedure for heart massage and artificial respiration to get theheart moving again. In general, the following occurs:
1. Chest compression
We are going to press on your chest to get your heart going again.
2. Rescue breathing
Open the airway, put a mask over your mouth and nose, and pump oxygen.
3. Electric shock
It will send electricity to the heart so that it can move normally.
4. Drug administration
Drugs to increase blood pressure are given.
*CPR usually consists of one set of chest compression and rescue breathing, not.
just one or the other.

Perform CPR

Do not perform CPR

It is reported that about one in six patients who undergo CPR during hospitalizationand can be discharged in good health regardless of disease or condition.

・If CPR is successful, you can live.

Risk

Beneﬁt・It does not cause unnecessary injury
to the body.

・If CPR doesn't succeed, you won't beable to live. The chest bones of elderly
people may break by cardiac
compressions.

It leads to natural death.

・Without treatment, the heart andbreathing do not move naturally, so you
cannot live.

However, if the underlying disease is not treated, CPR is often not effective.
5STEP
2Discontinuation of treatment that is expected toprolong life -Focus on painless treatment

In the process of treatment, if it is judged that the survival rate is gradually
decreasing and the end of life will come in a few weeks or days, the goal oftreatment will be reviewed based on your wishes. Active treatment is discontinued
and switched to treatment or care that focuses on relieving your pain as much as
possible.
For example
Ventilator attachment
and desorption repeated.
Next, if breathingworsens, ventilator is
not used.

Despite receiving dialysis
every day, one remains
unconscious. Since recovery
is diﬃcult with further
conJnuaJon, dialysis isdisconJnued.

An assisted circulation device
is installed. If the survival rate
is judged to be low, thecontinued use of the device
is discontinued.

In the ICU, patients may receive high-dose fluids and blood transfusions
to maintain blood pressure. In some patients, this may cause swellingthroughout the body and a significant change in the face. Skin problems
may also be caused due to the insertion of a tube through the mouth fora ventilator or due to the use of many devices or tubes.

The treatment and care that you switch to are based on your medical goals andvalues.
Think about what living is like for you.
6

MEMO

7

STEP
3

Understand the characteristics of the(Pros and Cons).

Let us compare treatment opRons when the survival rate becomes low and recovery
becomes diﬃcult during treatment.

Discontinue treatment thatmay
prolong life

Undergo full treatment
Content of treatment
It is more essential to live as long as
possible, even if the treatment involves agreat deal of physical and mental stress.

Instead of hoping that the treatment will
prolong your life, it will focus on relieving
pain as much as possible and treating yourway of life.

Whichever you choose, you can continue to treat your discomfort and distress withmedication as long as you want.

Survival ratio
It may be possible to prolong life.
・The 1-month survival rate of patientswith multiple organ damage is increasing.
However, long-term survival (more thanone year) is reported to be 37 ~ 74%.
Please check if you intended to use thetilde symbol (wavy dash).

・Depending on your condition, your heartand breathing may stop immediately or
may stop after a while.
・If your survival rate is low, you may avoid
unwanted treatment. Please check8Discontinue treatment that may
prolong life

Undergo full treatment
Return to a previous life
If recovered, more than 70% of patients canbe discharged without disability and may
be able to return to previous life.

Depending on when treatment is stopped,
patients may not be able to perform daily
activities by themselves after discharge.

Cognitive and mental function
・It depends on when you stop thetreatment. There is a high possibility
that you cannot think and express
yourself.
・The pain or discomfort may becontrolled by drugs or may not be felt.

・If recovery happens, 20-70% of
patients may be discharged without
cognitive decline.
・After treatment, 8 to 57% of patients
may develop depression and anxiety.
It has been reported that 50% of
patients may have this symptom for along time.

Psychological impact of surrogate decision-makers
Between 10-80% of surrogate decision-makers may experience
increased anxiety or depressive tendencies because of youradmission to the ICU.
When your death occurs, the anxiety andstress of the surrogate decision-maker mayincrease.

Your recovery may reduce the anxiety andstress of the surrogate decision-maker.

Cost of medical
The medical costs depend on the length ofICU treatment and the contents oftreatment.

The longer you stay in the ICU or stay onlife-support, the higher your medical costs.
9STEP
4

Clarify what you value and want to determineYour wishes for treatment are as important as medical judgment.
Let us examine what is important to you. Check the box that best
matches your preference.

Check

Discontinue treatment that may
prolong life

Undergo full treatment

1. In this judgment, how important is your lifesaving rate?

not matter at allneithervery important

2. In this judgment, how important is it whether you can go back to yourprevious life?

not matter at allneithervery important

3. What is an important issue for you?

Brain &nervousCardiac
heart

Lung

Being conscious. I do not want to I do not want
What you canuse an assisted to keep using
a ventilator
judge, etc.
circulation
for a longdevice, etc.
time, etc.

LiverKidney

I do not want to I do not wantput on an
permanent
assistive device, dialysis, etc.
etc.

10Extremities

I do not want to
be unable towalk or moveby myself, etc.

Discontinue treatment that may
prolong life

Undergo full treatment

4. Additional important issues or concerns for you?

not matter at allneithervery important

5. Are there any treatments that you really do not want to receive?

Yes

NoContents：

6. Is the extent of the medical expenses an important factor in this decision?

not matter at allneithervery important

7. In this judgment, is it important to give priority to your opinion at all times?

not matter at allneithervery important

8. Is the opinion of the surrogate decision-maker important in this decision?

not matter at allneithervery important

9. Is the opinion of the healthcare provider important in this decision?

not matter at allneither11

very important

STEP
５Decision

CheckNow let us check how ready you are to decide.
Do you know the benefits and risks of each option?

Yes

No

Do you know the benefits and risks of each option?

Yes

No

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

Yes

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

Yes

NoIf 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 ?
12

STEP
５Decision

In the previous sections, you thought about what you would value and decide.

Continue to receive all treatment regardless of the survival rate.

Discontinue life-sustaining treatment when the survival rate
decreases.
Now let us look at how ready you are to decide.
For me, life-prolonging treatment means:① It is the case where the lifesaving rate is considered to beabout% according to the judgment of the healthcare

practitioner.
.

② Others:
The following treatments are continued. (Check the treatment you want to receive)

Drugs to maintainblood pressure

CPR

Mechanical ventilator

Dialysis

Assisted circulation device (Percutaneous cardio
pulmonary support)

Infusions andnutrition

Blood transfusion

13

Write down your thoughts

It may be difficult to decide what treatment you want to receive
if recovery becomes difficult. Once you decide, there is nothing
you cannot change again.
Let us do our best to get over the surgery safely.
14References
１. Advance Care Planning: Should I Stop Treatment That Prolongs My Life? (Healthwise)[https://www.healthwise.net/ohridecisionaid/Content/StdDocument.aspx?DOCHWID=tu1430, 2020.3.4]
2 Desai SV et al. (2011). Long-term complications of critical care. Crit Care Med, 39, 371-379.
3 Hervey MA et al. (2016). Postintensive Care Syndrome: Right Care. Right Now…and Later. Crit Care Med,44, 381-358.
４ Winter BD et al.(2010). Long-term mortality and quality of life in sepsis: A systematic review.
Crit Care Med. 38, 1276-1283
５ Coulter A et al.(2013). A systematic development process for patient decision aids. BMC Med Inform Decis
Mak, 13 Suppl 2:S2.
６Nakayama K & Iwamoto T.（2012）. Patient-centered decision support -care to make a convincing decision-Develop by Kanako YAMAMOTO （St.Lukeʼs Internatinal University）
Illastrator : 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.