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TitleMeron, Tikva (2014) The meaning of advance directives in the lives of people with advanced long ...
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Page 153


We decided to include the Rabbi. We told him and we

signed him [Koby, husband, CS4].

In another example, Adam (CS9) reported that his wife’s resistance to

discussing his EoL preferences was so significant that he felt quite isolated

and could not discuss such issues with her at all. Yet most of the accounts

regarding spouses showed a tendency to communicate with them over many

years and gradually build mutual understanding around EoL care needs and


With non-spousal relatives, the sharing and discussion of patients’ ADs was

often different from the manner in which it occurred between most of the

couples in my sample. Patients often approached their non-spousal relatives

about their ADs when their mind was already set about their wishes and after

completing their AD document, rather than ‘developing insights together over

the years’ [Ben, husband, CS1] (i.e. often having had a process of conversing

about their wishes with their spouse in the past). In addition, as reported by

patients and relatives alike, the way in which patients approached their non-

spousal relatives with their ADs seemed quite technical and quick; it was

more a ‘one-time event’ of factually telling relatives that they had an AD and

handing a copy of the AD document to them, as will be demonstrated later

(see also Table 8, page 137).

After looking at the way in which the patients’ idea of an AD was shared, the

next section will look at how patients engaged relatives to become their future

substitute decision makers. The data in the following sections will highlight the

fact that such an engagement was not as simple as patients tended to see it,

especially with non-spousal relatives.

5.3 Choosing and nominating the decision maker

among relatives

In order to demonstrate the first layer of complexity in engaging relatives to be

decision makers for EoL issues, this section will focus on who was chosen to

represent patient-participants (see Table 8, next page).

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