Table 3 Overview feedback Step 3 and Step 5 and the finalization of the Flemish card game

1

Not being in pain

2

Not being short of breath

3

Being neat and proper*

Can be understood as “keeping an object clean” rather than personal hygiene.

Proper is a word used in a “having a clean house” context. Suggest to change to something to underline it is about person hygiene

Being neat and tidy

Accepted

4

Not being afraid

5

Having physical contact*

Unclear what kind of physical touch and if users would understand, but there were no problems about if the card was clear.

No comments. Card was perceived as very clear and important.

No changes were suggested since the card was perceived as straightforward and essential by potential users.

6

That my family is prepared for my death

7

Dying at home

8

Being able to say goodbye to my loved ones

9

Being able to share my memories and accomplishments with others*

Need for rewriting this card according to some health professionals as it should be more about “sharing life stories with others” as sharing “accomplishments” is not that important in Flanders.

No comments. Participants choose this card regularly.

No changes were suggested since the card was perceived as essential. Moreover, “share accomplishments” was perceived as important in step 2.

10

Being able to take care of unfinished business with family and friends

11

Being treated the way I wish to be treated

12

Keeping my dignity

13

Keeping my sense of humor

14

Being surrounded by good friends

15

Having someone who listens to me

16

Not being a burden to my family

17

Being able to do something for someone else*

Some healthcare professionals had comments about the translation since they felt this card was about “helping” and found “do something” too vague.

No comments.

No changes were suggested since the card was perceived as clear.

18

Being able to talk about what scares me

19

Being surrounded by my family

20

Feeling that my life is complete

21

That the doctor sees me as a whole person

22

Not dying alone

23

Be clear-headed

24

Being able to pray*

Health professionals considered this card as not relevant for the context and suggested to widen the formulation of this card to “spirituality”

Potential users found this card very important.

No changes were suggested since the card was perceived as important.

25

Having a spiritual counselor as support*

Some healthcare professionals suggested to use another term for “spiritual counselor” as they thought this term was unclear.

Potential users found this card clear

Since the term “spiritual counselor” is accepted and used by the all involved religions, no changes were suggested.

26

Being able to talk about death

27

Be at peace with God

28

Getting my financial affairs in order

29

Knowing how my body will change*

Unclear if it is about during or after life.

For people living with dementia and their family caregivers it was also important to understand how the mind will change.

Knowing how my body and mind will change

Accepted

30

Avoid discussions by ensuring my family knows what I want

31

Having someone to represent my values and priorities*

Priorities could be a difficult word to use. Suggestion to change it to important things, values or preferences.

Potential users found the word priorities difficult and suggested to change this card.

Having someone to speak up for what I think is important

Accepted.

32

Being able to trust my doctor

33

Having a healthcare professional I feel comfortable with

34

Arrange my funeral in advance

35

Not being dependent on machines*

Unclear what kind of machines. Suggestion to specific that kind of machines.

Unclear what kind of machines. Some potential users said they wanted a machine for comfort but not to keep them alive.

Not being dependent on machines to keep me alive

Accepted

36

A self-chosen end of life*

Though all healthcare professionals perceived this card as important, they found the formulation difficult. Some suggested to use the word “euthanasia” of “palliative sedation” as an example in the sentence.

Potential users found this sentence difficult. They suggested to reformulate it in a simpler way.

Being able to choose when and how I die^A

Accepted

37

Being able to record my choices*

Suggestion for more clarification for example “for the end of life”.

No comments. Card was perceived as very clear and important.

No changes were suggested since the card was perceived as clear.

38/39

Joker