| Capturing wishes |
Clinicians |
I tell the patients, ‘If it is not clear [the
wording of the form], write it in [ie., patients write in
their wishes on the form].’ Then it does fine. [This
is a workaround this clinician devised for the OKAD]. I think it is good on that. I looked it over. [This
clinician could not identify the details of the form to
explain what he thought made it adequately designed.] Useful tool. |
I think it captures their wishes very well and helps
stimulate questions and other information or desires they
had not thought of in the past. It’s improved compared to the state-approved
document. To me, the way it [The Five Wishes form] is
developed makes it a very good document. |
|
Patients |
Can’t remember the form very well. They give you a chance to change anything you may
want to change. I would have to read it all over again. I
don’t think you want to spend the time on that
again. As I recall, my husband and I did them together
… he’s in healthcare so he was able to answer
any question I had. |
|
| Reading level, language, and form
design |
Clinicians |
Pretty readable About what you would expect It might be a challenge for some people. In general, I think it is appropriate, but I
probably tend to assume a level of comprehension that my
patients may not possess, and I think they are often
uncomfortable bringing that up and telling me, even if I ask
if they understand it or not. I also realized the form itself is very complicated
and it’s hard to read at a different level |
I like it. It’s worded in a way that people
can understand it and what it is. They can understand how to word or communicate what
they want out of it and it’s not so scary-sounding in
the way that it is worded. The way it is worded it is
positive. I have given the form out myself to patients who are
not enrolled in the study as well. |
| Regarding form design: |
|
| Regarding form design: |
Asked about length: |
It’s OK It requires some explanation, but it’s OK Typically get zero positive input on the state form
[from a clinician in the Five Wishes arm of the study]. |
I don’t know how you can put in there [in the
form] everything that has to be covered. So, there is a lot
of stuff that goes into it, but it explains everything, so I
think if you take that out it makes it to where they
can’t understand what you’re asking of them.
You can make it short and they’re not going to answer
it.
|
|
Patients |
Well, with all those extra pages [explanatory
booklet] that they gave me, and I thought ‘Oh my
word!’ … it just kept me putting it aside
because I didn’t want to mess with it. In fact, we had checked some stuff that we
didn’t understand until the RN told us, ‘now,
do you understand that when you check off that they use all
parts of your body, but if you just specify the ones that
you want done, your body will only take 2 days but otherwise
it will take 2 weeks.’ |
I thought it was very informative, really, gave me a
lot of ideas I wouldn’t think of if I didn’t
have this form. … If you have seen the regular one [state
form], then you know what a bunch of jumble mumble [it
is]!… but this one is-I just don’t see how it
could be much simpler. Very easy to understand. It explains itself very well. I have no qualms with it at all. I understood
it. |
| Family and cultural context |
Clinicians |
|
Health care proxy selection easier. Allows discussion of cultural differences in a
respectful and culturally-sensitive manner. Several people really liked Wish 5. |
|
Patients |
I had already [completed an AD], once I saw that
Terri Schiavo mess and how they were recommending it. Plus,
my mother died without one and they had to pull the plug
… and that was like 10 years ago. So that is when we
thought, ‘No. we need to make sure we have
this.’
|
The only problem I had with it is, I am sitting
here looking at it right now, I had talked to my daughter it
said first choice and second choice, but my two daughters
felt like they should both be the person to help with my
care, not the second choice
|
|
Patients |
I must say my son was really wigged out that he
thought he was in charge of deciding whether to pull the
plug or not. My daughter is a respiratory therapist and so
she just told him to not worry about it–‘You
won’t be the only one there. I can make sure
it’s a hopeless kind of thing.’ [however,
daughter lives out of state, so son is first on HCP
form].
|
|
| Implementation success |
Clinicians |
|
The Five Wishes form is more accessible [than the
state form]. I know of a number of patients who have brought the
[completed] form in to me [since the start of this
study] [Our lack of success of implementation had nothing]
to do with the form. It’s just remembering to get
that in. The form itself is fine. |
|
Patients |
It’s with all of those other pages they gave
me and I thought, ‘Oh my word!’ … it
just kept me putting it aside because I didn’t want
to mess with it. I got everything on there. I just got to get it
back to him [the doctor]. |
|
| Facilitating EOL discussions |
Clinicians |
I tell patients, ‘I know it is silly, but it
is important for us to have these conversation … the
state requires that I do … it’s really just
protecting your family when you are no longer able to state
your wishes.’ I think it has been helpful. I haven’t noticed that it has done much for
that. More concrete. Takes the feeling out of it, the
emotional component out of it. It’s more cognitive.
You know, ‘Check, check, check.’ |
[this form] helps patients understand their
responsibility (for the need to make end of life care
decision): ‘Who would speak for you [if you
couldn’t speak for yourself]?’ Prior to this study I thought I was doing a pretty
good job. During the study I realized that the form itself
was important. The [Five Wishes] form itself does facilitate the
communication part at home more so than the others [other AD
forms] [The Five Wishes form] gets you to think about how
you would want to get care if you were very sick. |
|
Patients |
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