Towards a practice-based approach to prevent burdensome treatment: interviewstudy among cancer patients

The progress in the treatment of many cancers is substantial. With a growing
arsenal of new, more effective treatment options, deciding about treatment at
the end of life has become a delicate process. In general, when a curative goal
has become unfeasible, the goal of treatment is to delay and relieve
tumor-related symptoms. Yet, these goals may sometimes go together with serious
side-effects, such as nausea and fatigue. At present, possible overuse of
chemotherapy at the end of life is widely debated in the medical arena: To what
extent can chemotherapy be considered in the patient*s best interest?

Previous research shows that physicians and nurses seldom bring up the last
phase of life - in the most broadest sense - during consultations because they
regard such a conversation as a *contradiction in terms*: they seem to
associate such conversations with the forgoing of treatment (mostly
chemotherapy). This study also showed that physicians realized that late
initiations of end-of-life discussions (and possible withholding of further
treatment) would shorten their patients* time to accept death and to say
farewell. Because physicians did not want to take away the patient*s hope, by
confronting them with death, they seem to focus on further treatment in their
communication.

Nurses, however, sometimes said that they considered speaking about death and
dying - in itself - confronting and therefore difficult to broach. They further
more frequently seemed to question whether further treatment could be
considered in the patient*s best interest. The few physicians and nurses who
spoke with their patients about the last phase of life said that it opened up
the discussion and the quality of the communication.

Very recently, a discussion about the benefits of having an early discussion
about the end of life started up in the Netherlands. It is however unclear what
exactly the patients* wishes are in the last phase of life.

The primary objectives of this study are:

1. To assess the ideas and attitudes of patients with metastatic cancer about
continuation of (another line of) chemotherapy.

2. To assess how patients experience a discussion about the last phase of life
and in particular a discussion about their approaching death.

3. To assess patients* needs and wishes with respect to the last phase of life

And by means of this exploration (secondary objective):

4. To develop a checklist that informs, motivates and supports healthcare
professionals during the treatment decision-making and to assist them when they
have difficult ethical questions.

This is an observational study in which we would like to depict the attitudes
and experiences of patients with metastatic cancer about their care and
treatment wishes at the end of life as well as their thoughts about having a
discussion about their approaching death.

By interviewing cancer patients who receive (palliative) chemotherapy, we also
would like to explore the role of physicians and nurses in the treatment
decision-making and we will have short additional talks with the physician and
nurse afterwards [not applicable for this application].

We will interview approximately 20 patients. In about 10 patients, the nurse
will have an additional talk about patients' attitudes and wishes about the end
of life before the patient's consultation with the treating physician.

By comparing a group of patients who has had an additional talk with a nurse
with a group of patients who did not have such a talk, we will evaluate how
they experienced such conversations with nurses. This is a well-established
method in qualitative research.

Patients will be split up in two different groups:

- The first patient that will be recruited, will be interviewed after the
patient and physician made a decision about the next line of chemotherapy
(group 1).
- The second patient that will be recruited, will have an additional talk with
the nurse first about care and treatment in the last phase of life. After the
consultation with the physician, the patient will be interviewed.
- The third patient will be placed in group 1, the fourth patient in group 2,
etcetera.

Every interview will last approximately 45-60 minutes which could be considered
a burden of the study. However, such interviews can be worthwhile for patients
also especially because the interviewer is experienced in perfroming interviews
in the field of end-of-life decision-making.

Patients* experiences are essential for the development of this checklist. The
potential burdens are therefore in accordance with the (scientific) benefits of
the study.