"Unbearable suffering and euthanasia". A qualitative study of perceptions of patients, physicians and doctors consulted for a second opinion.

According to the Dutch Euthanasia Act that came into force in 2002, euthanasia
or physician assisted suicide (EAS) performed by a physician is not a criminal
act on condition that six specified conditions are adhered to. The second
condition states that the treating physician must be convinced that the patient
requesting EAS is in a situation of unbearable and hopeless suffering:
hopelessness means that palliative care can offer no possibility of alleviating
the symptoms (1). From a medical point of view, hopelessness can be determined
reasonably objectively; in 88 percent of cases, the request concerns a patient
in a terminal stage of cancer. In lower percentages of cases, the symptoms of
other diseases such as HIV, ALS, MS, and a CVA or a spinal cord lesion are the
underlying reasons for hopelessness (2). Ascertaining that suffering is
unbearable, however, is the greatest dilemma in the performance and assessment
of the euthanasia procedure (3, 4). Suffering has served as the focus of much
writing by philosophers, theologians, and healthcare professionals and lies at
the root of many complex ethical dilemmas. It is the crux in the discussion
around EAS(1).
In 1997, Rodgers and Cowles defined suffering as an individualized, subjective,
and complex experience that involves the assignment of an intensely negative
meaning to an event or a perceived threat (5). Current debates on the suffering
that underlies a request for EAS have been based on the perspectives of medical
professionals, lawyers, ethicists, politicians, and the general public (1,7, 8,
9). Most studies on euthanasia have been quantitative, focusing on the
attitudes of physicians, carers, and patients without giving consideration to
an actual request (4.16.17). Qualitative, experiential, and patient-based
research is needed to convey a clear idea of the enormous intensity of
suffering that underlies a request for EAS. Insight into the perceptions of the
suffering of the patient, the carers, the treating physicians, and the
consulted doctors is necessary to unravel the factors that influence the
complex decision-making involved in a request for EAS.

Purpose
The aim of this study is to gain insight on an empirical basis into the concept
of unbearable suffering in situations where a request for EAS is made from the
point of view of the patient, the treating physician, and the consulted doctor
and to develop a checklist as a tool to identify unbearable suffering and to
maximize the quality of the support to patients who are making end-of-life
decisions

Research questions
1. How do patients, caregivers, treating physicians, and consulted doctors
describe unbearable suffering (including somatic, psychological, and spiritual
aspects)?
2. What are the differences and similarities in the descriptions of the three
persons involved in an EAS request?
3. What are the implications of the differences for professional performance?
4. Which themes and elements of the concept of unbearable suffering can be
identified on the basis of the systematic literature review and the interviews
with patients, caregivers, treating physicians and consulted doctors, in order
to draw up a draft checklist of unbearable suffering in the case of a request
for EAS that incorporates the contexts of a patient*s experiences?
5. Is the draft checklist of unbearable suffering valid?
ality of the support to patients who are making end-of-life decisions.

Prospective in-depth interviews with patients who have asked their treating
physician for EAS form the heart of the research. Interviews with the informal
caregivers closest to the patient are scheduled to gain insight into their
influence on the patient*s request. Following these interviews, further
semi-structured interviews will take place with the treating physicians and,
when relevant, the consulted doctors.

the patients interviewed and their closest caregivers are considered to be
emotional vulnerable. The interviewer, being an experienced general physician
and trained SCEN consultant is aware of this. During the whole procedure she
will respect every sign that implicates the wish to end the interview and
respect emotions raised by the questions. In her function as SCEN consultant,
she experienced the willingness of patients and their closest caregivers to
talk about their thoughts and emotions to a passing stranger. Talking about
their lives, the ilness, the suffering helps them to deal with the approaching
death.