Patient participation in end-of-life-decision-making

The discussion model or shared decision-making model are often considered
ideal. However, results of several empirical studies have given rise to the
question whether these models are always the most suitable in all situations or
in all patient groups. Important in the decision-making are the deliberation on
the quality and quantity of life and the proportionality of the treatment. In
this, the perspective of the patient is very important. It is known that when a
patient is competent, end-of-life decisions are almost always discussed with
patients in the Netherlands (92%).
The above illustrates the importance of patient-participation in end-of-life
decision-making and the role decision-making models can play in researching
this theme. While in this time and age the trend is to advocate shared
decision-making models, existing studies already indicate that different groups
of patients may have a different most preferred decision-making model. Many
existing studies are retrospective or based on hypothetical cases (introducing
e.g. recall bias and socially desirable answers) and focus either exclusively
on the patient or the physician perspective on participation.
We will conduct prospective research, including the qualitative methods of
observation and in-depth interviews, that is aimed at getting more insight in
(combinations) of decision-making models used in practice in non-treatment
decision-making in end-of-life care and how this is experienced by (different
groups of) patients as the preferred way of participation in decision-making.
The physician-perspective will be included since both the patient and physician
perspective are needed to truly understand patient-physician communication.

Overall aim of the study is to investigate which decision-making models for
patient participation are used in practice in end-of-life decision-making and
how appropriate are these models for different patient groups.
Secondary Objective(s):
1. In which way and to what extent do patients (and their family) participate
in decision-making processes on whether or not to start life-sustaining
treatment in the last phase of life? (i.e. which (combinations of)
decision-making models are used)
2. To what extent are patient (and their family) and physician satisfied with
their participation in the decision-making?
3. What preferences do patients (and their family) have concerning
participation in non-treatment decisions? Do these change in the course of an
illness trajectory?
4. Which models or components of models are appropriate for non-treatment
decisions in different patient groups in the last phase of life?
In answering these questions a point of focus are possible differences related
to age, sex, religion, ethnicity, education level, and level of competence and
possible other relevant factors that come up in the course of the study

We will perform a qualitative prospective study.
In order to study patient-physician communication and patient participation in
decisions whether or not to forgo life-sustaining treatment, in this study the
methods of participant observation and in-depth interviews will be used.

Patients can experience emotional distress caused by the interview. In-depth
interviews may be emotional because patients are confronted with their illness
and end-of-life phase. For the physicians who are interviewed the main burden
will be an investment of time. Future patients and their partners/proxies may
benefit from this study, the same holds true for the physicians.
In our view, the burden associated with participation is proportionate to the
potential value of the research for future patients, their partners/proxies and
the physicians.