Wishes and expectations concerning the end of life: the perspectives of frail elderly.

Treatment needs and end-of-life agreements have been discussed for years and is
still one current issue. It comes in the news, in the debate, and is
increasingly discussed in the general practice. Frailty in the elderly is an
important factor to take into account in these considerations. In the
Netherlands we define the elderly as - mostly very old - often with several
disorders that are usually associated with physical, psychological,
communicative and / or social limitations. Frail elderly are entitled to
appropriate care. Recording treatment requirements and making agreements around
the end of life ensures that the elder himself is in control of his appropriate
care. Since 2014, "the care program for the frail elderly" has been implanted
in general practice in the Netherlands. To determine the treatment wishes and
agreements regarding the end of life is an important topic in this.
When admitted to hospital, these considerations still have to be made too
often, in an often acute and stressful situations. Even in quiet situations,
doctors do not find it easy to have this conversation. Also is it is not always
clear when this conversation must take place.
GPs have already given their opinion about elderly care in their practice. It
is still unclear what the opinion is of the elderly people themselves, what
their wishes and expectations are. In this study we want to gain insight into
the experiences of frail elderly people with this difficult conversation. With
whom, how and at what time they prefer to do this conversation. What their
expectations are about recording and sharing this information and what
these findings mean for the frail elderly care program.

Gaining insight into the expectations of frail elderly people regarding the
definition of treatment wishes and agreements about the end of life.

Given the exploratory nature of the research goal, we will use a qualitative
methodology with in-depth, face-to-face interviews. Purposive sampling will be
used to ensure diversity in the study population.
We developed an interview guide on the basis of the research question and a
literature review. The interviews will take place at the participants* homes
and last 30-60min. The interviews are audio-taped and transcribed verbatim.
Demographics are collected before the interviews. There will be eightteen to
twenty interviews.

We will use the constant comparative method for analysing the data. This method
is part of the grounded theory approach in which data is analysed to develop a
theory. We will use ATLAS.ti version 8.4.15 software to process the data.
Analysis starts as soon as the first data was collected and will continue with
each additional interview. The first step in analysis is data reduction. To
minimize subjectivity, two researchers will code the transcripts
independently. We will use open coding. This is the interpretive process by
which data is broken down, examined, compared, conceptualized and categorized
into codes. The goal is to obtain new insights by breaking through standard
ways of thinking about phenomena reflected in the data. After two interviews we
compare the codes and three researchers will discuss them until they reach
consensus. Subsequently a new coding scheme is developed for further use. New
codes could be added. We will group codes referring to the same phenomenon in
categories, allowing the categories and names for categories to flow from the
data. Finally, as part of the prospective grounded theory, we will try to
relate the categories to each other. To ensure credibility by investigation
triangulation, seven specialists on the topic are asked to give their opinion
about the codes and categories in a peer-group discussion. This group will
include one general practitioner, a PhD palliative care, a specialist elderly
care, a professor of spiritual healthcare, a district nurse palliative care, an
elderly and member of target group network 100 and the student researcher.

No risks associated with participation