- S. Papagrigoriadis* and A. Koreli
Department of Colorectal Surgery, KingÕs College Hospital,
Denmark Hill, London SE5 9RS, UK
*Correspondence to E-mail: svpaps@yahoo.co.uk
Eubios Journal of Asian and International Bioethics 14 (2004), 135-138.
Interviewing
is increasingly used in health services research to examine in depth the
outcomes of treatment, quality of life issues and other health parameters. In
this article we examine several problems generated when researchers use
interviewing to explore life threatening issues such as cancer and other
terminal conditions. We discuss whether the interview itself can be considered
as an ÒinterventionÓ, whether the interviewing process may have a detrimental
effect on the patient, and situations where the interview can create distress
or disrupt the patientÕs coping strategy. The research interview may partially
substitute counseling and the researchers may face ethical dilemmas when they
are at the same time involved in the clinical care of the patients they are
interviewing. The research interview is a complex issue that needs a careful
and well designed approach to achieve the research objectives without harming
the patient or the clinician-patient relationship.
Keywords:
Interviews, qualitative research, life threatening issues, sensitive issues,
doctor patient relationship, medical ethics, quality of life
Qualitative
Research has its origins in Social Sciences but it has moved into the area of
Health Sciences. Although it has mainly flourished within Nursing Research,
there has been recently an increasing emphasis within Medical and Surgical
research on Quality of Life (QoL) as an outcome measure of medical treatments
and even surgery. Disease - specific QoL instruments are constantly being
designed and tested in all medical areas. Patient interview is a key technique
in developing those instruments. Clinicians are increasingly likely to be
involved in clinical studies that contain QoL assessment, with structured or
non structured interviews, alongside collection of clinical data. Clinical data
are correlated with QoL data to produce the research findings. The same
attention to ethical issues that is required for the design of the clinical
part of the studies is also required for designing and implementing the
interviews with patients. Interviews can be Òstraight forwardÓ and risk free if
the research object is benign disease. However, when the research object is a
life – threatening disease, such as cancer, then more ethical issues
arise. In this article we attempt to address some ethical questions and
possible areas of risk when we interview patients with life threatening
conditions for research purposes.
Interviewing
the patient is the first step of any medical assessment. Taking the patientÕs
clinical history is in fact an interview. This interview aims to reveal the
patientÕs symptoms and problems and provide the physician with the necessary
information in order to decide on diagnosis and treatment. During follow-up
after any treatment, interviewing is part of the assessment of outcome: it aims
to reveal if the patient is satisfied with the result of the treatment.
PatientsÕ views on their care are a way of measuring the outcome of treatment.
Quality of life assessment is important for life threatening conditions that
require radical treatments. Those treatments often have an adverse effect on
quality of life.
Apart
from its role in clinical practice for assessment of treatment results and
quality of life, interviewing is also a powerful research tool that allows
insight into patientsÕ experience of disease and treatment.
Patients
evaluate disease symptoms, short and long term problems, in a different way
than physicians. A non-structured (without pre-designed questions) or
semi-structured (based on pre-designed questions but allowing freedom to the
patient to add other information) interview can help getting the patientÕs
perspective on the risk of adverse outcomes- death may be only one of them.
Other adverse outcomes that may actually be more important to patients may have
to do with inability to work, fear of social isolation, concerns about the fate
of their children and others.
Each
patient finds an individual Òcoping strategyÓ for those risks[i]
.This strategy does not emerge instantly. Patients go through phases of reaction
to the diagnosis. There is a denial/anger/acceptance model described by Gleser
and Ihilevich[ii]. Lazarus
and Folkman[iii]
have described coping with risk as a constant behavioral and cognitive effort.
While
interviewing on life threatening issues we must be aware of potentially
different perspectives in order to look for it through open questions and
probing. A research interview will often be used to assess the patientÕs
quality of life. This can be a difficult task. Often established treatments
have side effects that are under-reported[iv] . On the other hand, patients with
apparently bad quality of life, i.e. paraplegics, patients with colostomy or
chronic diseases, have adapted to their lifestyle, draw some satisfaction fro
their life and are not prepared to trade off quantity for better quality[v]
.
One
of the serious ethical considerations when designing a study with interviews on
life threatening issues is whether the research process might affect the
management. The patient may reveal personal or psychological problems that have
not been recognized or appeared since last clinical review. The researcher will
be ethically obliged to inform the treating physician, thus having an impact on
management[vi]
. This phenomenon will be more significant if the researcher is medically
trained and thus able to detect easily clinically important information. While
no one can argue with that from the ethical point of view, if it happens too
often it might bias the findings, particularly if the design of the study
involves repeat interviews with relatively long intervals in between.
One might claim that if they have accepted to participate
patients feel confident that the interview process will not cause them any
distress. However patients may feel they have to participate out of obligation
to treating physicians while they are not entirely satisfied with the process.
Others may participate because they feel they might obtain disclosure of
additional information. A number of patients and relatives (10-15%) ask the
researcher straight forward clinical questions[vii] . If the researcher is medically
qualified they have to choose between refusing to answer and the risk of
disclosing information that might be confusing or upsetting. A refusal will
undermine the patientÕs trust in the researcher and might cause people who are
not familiar with research methodology to suspect that information is
deliberately withheld from them. Obviously this will have a negative effect on
the amount and quality of information disclosed during a non structured
interview. On the other hand if the medically qualified researcher attempts to
discuss the clinical details of disease and treatment there is risk of providing
information that does not coincide entirely with that given by the treating
physician. The result will be confusion and apprehension of the patient and
difficulties with the management as well as with the clinicians-researchers
relationships.
An
Òin depthÓ interview may disrupt the patientsÕ coping strategy. This is
particularly true if the patient is still in the phase of denial or if they are
not fully aware of the prognosis or other details of their condition. Although
all patients participating in a study are supposed to be fully aware of their
diagnosis and the relevant details, research has shown that quite a few of them
are often unaware of how bad their prognosis isiv. There are a number of reasons for that:
They may have been told explicitly but medical terminology as well as the
details of diagnosis and treatment are often too complicated, particularly for
patients of low education. Rejection and denial causes some patients to
selectively forget the ÒworseÓ news such as the option of chemotherapy after
surgery, the possibility of a colostomy or complications etc[viii]
. Typically, while some patients with cancer want to have an estimate of how
long they are expected to live, others avoid carefully to ask that question
even at very late stages of the disease. Often their physicians may be aware of
this but avoid to Òforce-feedÓ the details for humanitarian reasons. In certain
Asian, Arabic or Mediterranean cultures the family reinforces this phenomenon
by being over-protective. A way to find out indirectly how much they know is to
start with questions about recollections from the time of diagnosis and
treatment planning.
Closed
questions are fast in the field and can be coded without effort afterwards.
They trace easily the main points of interest of the researcher and are
amenable to statistical analysis. Closed questions can be carefully phrased in
advance to avoid causing stress, they can also be tested in pilot studies to
ensure compliance with cultural factors of the patient population. Therefore
interviews with closed questions represent the Òsafest optionÓ from the ethical
point of view. However they
provide only a limited degree of options and thus may miss important aspects of
the patientÕs problems if those have not occurred to the researchers or have
not emerged during the pilot phase of the questionnaire. Open-ended questions
are time consuming both in the field and in the office since they require a
major coding effort. However they give the best chance of revealing the depth
and variety of all the problems that might otherwise escape. Semi- structured
interviews with both open-ended and close-ended questions help to reveal much
more then questionnaires[ix]
[x].
Inevitably, though, they carry more risk for unexpected directions of the
patientsÕ answers and the researcher must have good personal communication
skills and experience in order to handle unexpected reactions with minimal
stress for the patient.
Sometimes
there rises the question of relative presence: some patients are poorly and
feel safer with a relative beside them to monitor the interview in a protective
way. Relatives are variable. They can stay in the background or they can take
over the interview and handling them tactfully requires skills and experience
of the researcher. Family relationships play a role and the researcher must
have the skills to distinguish between a supportive relative and an
overprotective dominant member of the family who may influence the patientsÕ
answers and alter the findings of the research project.
The
majority of patients (85-95%) are happy to participate and remain happy
afterwards[xi] [xii].
Some use it as an opportunity to express gratitude towards the physicians while
on the other hand others use it as an opportunity to complain about
unsatisfactory management. A
number of patients describe the interview experience as an opportunity of
self-reflection and insight. However a small group (~5%) can find the interview
very disturbing and regret itvii.
It has not been possible to identify in advance who is at risk for this
emotional reaction so the researcher has to be alert to this possibility for
early recognition during the interview process.
Although
not designed for this purpose the interview can be used as counseling by
patients and families. If successful this can be beneficial. However counseling
requires appropriate training and personality skills. Furthermore, counseling
is not automatically acceptable and beneficial by all cancer patients and
experience and discretion are important[xiii]
.
Interviewer
issues
Physicians
often tend to ask close-ended, directed questions[xiv]
. The reason for this is that they try to obtain a Òworking diagnosisÓ and
because of time pressures. Studies with doctors and nurses found that both use
Òdistancing tacticsÓ when talking to terminal patients in order to maintain
their emotional survival[xv] [xvi].
Cancer
and HIV patients will often not disclose their concerns unless appropriate
interviewing techniques are used. These skills can be acquired through
specially designed courses[xvii]
[xviii]
Medico-legal
barriers
Interviewing
as part of clinical management is subject to litigation risks. Litigation
against doctors is increasing and is now starting against nurses as well.
Informed consent documents are becoming increasingly extensive and technical.
Since 1998 the GMC has allowed patients to tape record the clinical interview
and the consent process. An increasing number of the patient complaints
received yearly by NHS trusts are about verbal interactions, misinterpretation
of information or non- verbal communication between staff and patients.
Doctors
and nurses may consciously or unconsciously adopt defensive and distancing
interviewing attitudes to ensure protection from litigation at the expense of
empathy and encouragement.
Interviewing
on life threatening issues contains ethical dilemmas and risks of psychological
harm to the patient. It also carries a risk of a negative effect on the
doctor-patient relationship. The ethical issues we examined in this article
should be taken into account when designing structured or non structured
interviews and questionnaires for research purposes. The researchers in the
field should have understanding of those issues and appropriate training and
experience as well as inter-personal skills.
References
[i] Watson B & Heyman B (1998):
Risk and coping with diabetes, p: 187-198, in: Risk health and healthcare, Ed. B Heyman, Arnold.
[ii] Gleser GC and Ihilevich D
(1969): An objective instrument for measuring defence mechanisms. Journal of
Consulting and clinical psychology, 33, 51-60.
[iii] Lazarus RS and Folkman S (1984):
Coping and adaptation. In Gentry, WD ed. the handbook of behavioural
medicine.
Guilford.
[iv] Davies E, Clarke C, Hopkins A
(1996): malignant cerebral glioma-II: Perspectives of patients and relatives on
the value of radiotherapy. BMJ 1996 Dec 14;313(7071):1512-6.
[v] Stiggelbout AM. de
Haes JC, Kiebert GM, Kievit J., Leer JWH (1996): Tradeoffs between quality and
quantity of life:development of the QQ questionnaire for cancer patient
attitudes. Med Decis Making;16:184-192.
[vi] Plant H (1996): Research
interviewing. Palliat Med 1996 Oct;10(4):339-41.
[vii] Davies EA, Hall SM, Clarke CRA,
Bannon MP, Hopkins AP (1998): Do research interviews cause distress or interfere
in management? Journal of the Royal College of Physicians of London Vol. 32;5:406-11.
[viii] Miles BJ, Giesler B, Kattan MW
(1999): Recall and attitudes in patients with prostate cancer. Urology 53(1):169-74.
[ix] Oppenheim AN (1998): Questionnaire
design, interviewing and attitude measurement. Pinter, London.
[x] Bowling A (1997): Research
methods in health.
Open University Press, London.
[xi] Funch DP,
Marshall JR (1981) Patient attitudes following participation in a health
outcome survey. Am J Public Health 71(12):1396-8.
[xii] Fallowfield LJ, Baum M, Maguire
GP (1987): Do psychological studies upset patients? J R Soc Med 80(1):59.
[xiii] Moynihan C, Horwich A, Bliss J
(1999) Counseling is not appropriate for
all patients with cancer. BMJ
318(7176):128 .
[xiv] Beckman HB, Frankel RM (1984):
The effect of physician behavior on the collection of data. Ann Intern Med 1984 Nov;101(5):692-6.
[xv] Maguire P, Faulkner A, Booth K,
Elliot C, Hillier V (1995): Helping cancer patients disclose their concerns. European
Journal of Cancer
Vol.32A;1:78-81.
[xvi] Espinosa E, Gonzales Baron M,
Zamora P, Ordonez A, Arranz P (1996): Doctors also suffer when giving bad news
to cancer patients. Support Care Cancer 1996 4(1):61-3..
[xvii] Epstein RM, Morse DS, Frankel
RM, Frarey L, Anderson K, Beckman HB (1998): Awkward moments in
patient-physician communication about HIV risk. Ann Intern Med 1998 Mar 15;128(6):435-42.
[xviii] Maguire P (1985) : Barriers to
psychological care of the dying. Br Med J (Clin Res Ed) 1985 Dec 14;29(6510)1711-13.