Stigma, shame, and blame experienced by patients with lung cancer: qualitative study
BMJ 2004; 328 doi: https://doi.org/10.1136/bmj.38111.639734.7C (Published 17 June 2004) Cite this as: BMJ 2004;328:1470
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Quote: There is no greater incentive to stop smoking than the
diagnosis of a smoking related cancer. Hence, the associated stigma has a
greater potential to benefit rather than harm cancer patients.
If only! How does diagnosis of cancer relate to stigmatisation and the
cessession of smoking? This statement relies on falsely assuming a link
between a smoker diagnosed with lung cancer who decided to try and stop
smoking and the impact that anti-smoking public health campaigns have on
their targetted audience. The role of stigmatisation in public health
campaigns is powerful and problematic. Stigmatisation is about judging
people's character negatively and acting on that judgement on the basis
of unwarranted or illogical assumptions (like shape of head, skin colour,
diagnosis of HIV or lung cancer). I think it important to understand
that the inferences being constructed in public health campaigns are
about constructing moralised boundaries between people that work on the
basis of changing societies moral tolerance of costly behaviours - of
branding someone who drinks and drives a 'bloody idiot' or the mother
who smokes in the same room as her children as a poisoner as in the
current ad campaigns in NZ.
These campaigns operate at the 'benign' edge of intolerance but with
intolerance all the same, and that is the point that Chapple et al. are
making. To presume that stigmatising cancer patients will benefit them (by
somehow forcing them to stop smoking) shows a need to appreciate more the
double edged sword of moral opprobation and the complexity of people's
behaviours.
A helpful introduction is E. Goffman (1990) Stigma: Notes on the
management of spoiled identity, London: Penguin.
Competing interests:
None declared
Competing interests: No competing interests
I remember a campaign many years ago encouraging doctors to record on
a patient's death certificate that a smoking related death was due to
smoking. Several years ago my father was diagnosed with lung cancer. He
was a non-smoker and not even a passive smoker.
In the months leading up to his death I became very concerned that in
years to come people seeing his death certificate in the archives would
assume that he died because of smoking. This upset me.
After his death I asked the doctor providing the death certificate to
state on the form that my father was a non-smoker. This was done. I had
one hurdle left. I am pleased to say that the Registrar of Births and
Deaths accepted the death certificate as it was written along with the
comment that my father was a non-smoker. This helped me greatly in the
days after my father's death.
If doctors are to be encouraged to record on a death certificate that
a patient was a smoker then I think it is only fair that the opposite can
be appended as well.
Competing interests:
None declared
Competing interests: No competing interests
Stigmatisation is of overall benefit to the society and is an
essential tool to counteract the ‘peer pressure’, which is a prime factor
in inducing youngsters to take up smoking.
On an individual level, Stigmatisation benefits even the smokers who
develop a cancer (1). Compared with Never-smokers and Ex-smokers, Current
Smokers i.e. patients who smoke while receiving treatment for their
cancers have poorer survival rates (2 3). They also experience more
treatment related toxicity (4). Moreover, even after the successful
treatment of a smoking related cancer, patients who continue to smoke are
at risk of developing a second primary cancer (5). Hence, smoking
cessation even at diagnosis would benefit the smokers.
There is no greater incentive to stop smoking than the diagnosis of a
smoking related cancer. Hence, the associated stigma has a greater
potential to benefit rather than harm cancer patients.
References
1. Chapple A, Ziebland S, McPherson A. Stigma, shame, and blame
experienced by patients with lung cancer: qualitative study. BMJ
2004;328(7454):1470-0.
2. Videtic GM, Stitt LW, Dar AR, Kocha WI, Tomiak AT, Truong PT, et
al. Continued cigarette smoking by patients receiving concurrent
chemoradiotherapy for limited-stage small-cell lung cancer is associated
with decreased survival. J Clin Oncol 2003;21(8):1544-9.
3. Browman GP, Wong G, Hodson I, Sathya J, Russell R, McAlpine L, et
al. Influence of cigarette smoking on the efficacy of radiation therapy in
head and neck cancer. N Engl J Med 1993;328(3):159-63.
4. van der Voet JC, Keus RB, Hart AA, Hilgers FJ, Bartelink H. The
impact of treatment time and smoking on local control and complications in
T1 glottic cancer. Int J Radiat Oncol Biol Phys 1998;42(2):247-55.
5. Richardson GE, Tucker MA, Venzon DJ, Linnoila RI, Phelps R, Phares
JC, et al. Smoking cessation after successful treatment of small-cell lung
cancer is associated with fewer smoking-related second primary cancers.
Ann Intern Med 1993;119(5):383-90.
Competing interests:
None declared
Competing interests: No competing interests
Sirs,
Apart from the intriguing considerations summarized properly in the
interesting paper (1), as well as the difficulty I encounter in understanding
that patients, who never smoked, “felt particularly stigmatised because
the disease is so strongly associated with smoking”, I’d like to invite my
dear colleagues to remember that now-a-days we can either prevent or cure
both diseases, like cancer, and their consequences, as stigma (2) (See
website HONCode 233736, www.semeioticabiofisica.it). In fact, all over
the world, authors ignore or overlook, unfortunately, the existence of
both Oncological Terrain and other numerous biophysical-semeiotic
constitutions (3, 4), as well as biophysical-semeiotic bed-side
recognizing cancer “real” risk, in a quantitative way, e.g. in the lung,
and cancer since its early stage (2,3,4). Consequently, all authors think
wrongly that “all” individuals can be affected by malignancy, suggesting,
e.g., mammography and other screening measures, aiming to efficacious
prevention, therefore spending uselessly NHS money, and physician’s energy
and time. In addition, a woman as well as a man, of course, can be
affected by Oncological Terrain, even with or without precise real risk
location in a well defined biological system, as lung (“ab posse ad esse
non licet illatio”, Kant, Kritik der reinigen Vernunft).
Finally,
educational interventions should certainly be presented with care so as
not to add to the stigma experienced by patients with lung cancer and
other smoking related diseases; however, only in individuals involved by
Oncological Terrain, according to my theory of Single Patient Based
Medicine (See website www.semeioticabiofisica.it/microangiologia.it).
1)Chapple A., Ziebland S., McPhersonA. Stigma, shame, and blame
experienced by patients with lung cancer: qualitative study. BMJ
2004;328:1470 (19 June), doi:10.1136/bmj.38111.639734.7C (published 11
June 2004)
2) Stagnaro-Neri Marina, Stagnaro Sergio. Introduzione alla Semeiotica
Biofisica. Il Terreno oncologico”. Travel Factory SRL., Roma, 2004.
http://www.travelfactory.it/semeiotica_biofisica.htm
3) Stagnaro S. Terreno Oncologico e Oncogenesi
http://digilander.libero.it/piazzettamedici/professione/professione.htm
4) Stagnaro-Neri M., Stagnaro S. Cancro della mammella: prevenzione
primaria e diagnosi precoce con la percussione ascoltata. Gazz. Med. It. –
Arch. Sc. Med. 152, 447, 1993
5) Stagnaro S. “Single Patient Based Medicine” versus EBM.
http://bmj.com/cgi/eletters/326/7398/1048#32299 (16 May 2003)
Competing interests:
None declared
Competing interests: No competing interests
Patient blame, depression & anxiety: The role of health promotion and support groups
The research article by Chapple, Ziebland & McPherson (2004)
highlights the problems for patients who are diagnosed with conditions
that are widely perceived as being consequent on individual patient
behaviour and/or lifestyle. The authors report on lung cancer patients’
experiences of stigma and shame in discussing their condition but these
results would no doubt be found to be reflective of patients suffering
other illnesses to which they might be seen as partly culpable. This very
interesting study and the results obtained brings to mind two allied
factors. The first is the role of health promotion strategies in general
and the unfortunate side-effects of patient education in contributing to
the further individualization of health and disease management in addition
to creating the conditions for widespread blaming of people for their
illnesses. The shame and stigma felt by patients disrupts their social
relations (as reported by the authors) but may also increase their chances
of depression and anxiety with consequences for adversely affecting not
only their quality of life and their ability for caring for themselves but
their chances of recovery and survival ( Coughlan, 2004). The second inter
-related aspect relates to the effects of support groups for patients in
increasing their experiences of personal agency once diagnosed and for
helping in overcoming the isolating effects of such stigma (Mullett &
Coughlan, 1998).
The focus on health promotion strategies in educating populations of
their role in staying healthy is one that should be lauded and in most
health systems in the industrialized world, could well use further
encouragement and funding. Health promotion strategies increased as
healthcare professionals realized that the major threats to health were
more likely to be linked to chronic conditions rather than infectious
disease. This meant a redoubled effort to educate patients regarding the
role of problematic behaviour in contributing to ill health and
encouraging personal involvement in maintaining active attention to
healthy choices and treatment regimens (Coughlan, 2004). In addition, many
professionals and policymakers were becoming increasingly aware of the
role of industrial development in exacerbating the problems of chronic
disease. Initially, health promotion advocates (especially in Canada)
contextualized the experiences of individual cases of illness with a whole
host of environmental, psychological, cultural and socio-economic factors
(Mustard & Frank, 1991: Evans, 1988). Unfortunately this focus on the
“determinants of health” was seen by some political and corporate bodies
as perhaps too damaging to certain interests to sustain in major health
initiatives. A much more “watered down” version that stressed individual
responsibility rather than societal culpability in creating unhealthy
societies was more palatable to many and this version received greater
funding and became the generally preferred model (Frank, 1995). Thus while
the determinants of health model was still a major field of study for
academics, the major public education emphasis became a redefinition of
the more richly contextualized version of health promotion for one that
stressed personal lifestyle and choices (Townson, 1999; Frank, 1995).
However this individualized version of health promotion is not
without its critics. For instance many people (especially those in lower
socio-economic groups) have less of a sense of personal agency for a
variety of reasons and have much greater difficulty in changing either
their behaviour or their situations (Wilkinson, 1996). Those who depend on
certain heavy or chemical industrial processes for their livelihood may
have a drastically increased lifetime burden of toxicity and
simultaneously will tend to fail to see that they are able to change their
situation. Even those working in the modern computer industry are now
reporting serious illness as a result of toxic substances in the
workplace. For those who have experienced little ability for making
meaningful choices throughout their lives (again more probably affecting
those at the bottom of the socio-economic hierarchy), changing habits such
as smoking or drinking excessively is much more difficult. The
individualized message of health promotion continues to be a positive one
but the lifestyle changes and the consequent positive outcomes are more
readily taken up by those who have experienced greater horizons for choice
in general. Thus health promotion has worked much more effectively for
those in higher socio-economic strata (Townson, 1999).
Another serious downside to the individualistic tendency in health
promotion emerges when a critical mass of society internalizes the
connection between choice, behaviour and health but moves a step further
to indulge in very divisive and unsympathetic views that harden into a
common social-psychological phenomenon of “blaming the victim”. The social
- psychological literature abounds with examples that demonstrate the
ubiquity of this reaction in western individualistic societies and the
harmful effects with respect to many different scenarios, including
personal injury and rape situations (e.g. Dekeseredy & Kelly, 1993;
Fischer, 1986). Chapple, Ziebland & McPherson (2004) demonstrate this
in their results with lung cancer patients. However this phenomenon is
also a common accompaniment to attitudes to health in general as many
people are now more likely to blame the victims of even fairly minor
illnesses for their condition (Bittman & De Fail, 1999). The real
problems for the patient emerge when (as with the patients in the article
by Chapple et al) these societal attitudes are internalized to such a
degree that they further isolate and penalize those who already are coping
with a serious life situation. Many studies have demonstrated that for
those who are diagnosed with a serious illness, the co-occurrence of
depression or anxiety not only diminishes perceptions of quality of life
but will likely interfere with any possible recovery process and/or may
hasten morbidity. This has been adequately demonstrated with many
conditions and especially with cancer patients (e.g. Tjemsland, Soreide,
Matre & Malt, 1997; Kiecolt-Glaser, 1995; 1996; Benson & Stark,
1997).
In addition it was interesting to note that those who attended
support groups were reported as not only discussing the shame and stigma
of having been diagnosed with lung cancer but were more aware of other
causes, especially those linked with industrialization and the culpability
of tobacco companies in product promotion. This “resistance” to the
stigmatization might also be seen as a resistance to the individualization
of their illness. Indeed, we can place many sufferers of lung cancer at
the centre of the nexus of choice if they consumed tobacco products but
the tendency to blame individual sufferers glides too gently over the
socio-economic arrangements that contribute to ill health in industrial
society. The discussion of these issues by the support group members may
well have positive effects with regard to recovery and survival for many
of these patients. Many studies have detailed the positive psychological
effects to patients from support group membership. With regard to the
patients who participated in the lung cancer study it might be interesting
to know of how the support group contributed to their quality of life,
experiences of personal agency and if their “resistance” had any positive
effects with regard to outcomes.
References
Benson, H & Stark, M. (1997). Timeless Healing: Biology and the
Power of Belief. New York. Fireside.
Bittman, B. & DeFail, A. (1999). Reprogramming Pain: Transforming
Pain and Suffering into Health and Success. Touchstar. Meadville, PA
Chapple, A., Ziebland, S. & McPherson, A. (2004). Stigma, shame
and blame experienced by patients with lung cancer: Qualitative study.
British Medical Journal 328:1470
Coughlan, R. (2004). Agency communication and embodiment. Using
Qualitative research to explore healthcare relationships. Psychology &
Health. (In review)
Dekeseredy, W. S. & Kelly, K. (1995). Sexual abuse in Canadian
university and college dating relationships: The contribution of male peer
support. Journal of Family Violence, 10, 41-53.
Evans, R. (1988). Health promotion or ideology. Health Psychology, 7,
203-19
Fischer, G. J. (1986). College students attitudes towards forcible
date rape: Cognitive predictors. Archives of Sexual Behaviour, 15, 457-66
Frank, J (1995). The Determinants of Health: A New Synthesis. CIAR
Programme in Population Health, Working Paper 54. Toronto. Canadian
Institute for Advanced Research.
Kiecolt-Glaser, J. K. (1996) Chronic stress alters the immune
response to influenza vaccine in older adults. Proceedings of the National
Academy of Sciences, 93, 3043-47.
Kiecolt-Glaser, J. K. (1995). Slowing of wound healing by
psychological stress. Lancet, 346, 1194-96
Mullett, J. & Coughlan, R. (1998). Clinicians’ and seniors’ views
of Reference Based Pricing: Two sides of a coin. Journal of Applied
Gerontology, 17, 3, 296-317
Mustard, J. F. & Frank, J. (1991). The Determinants of Health.
Toronto. Canadian Institute for Advanced Research.
Competing interests:
None declared
Competing interests: No competing interests