Cancer Flashcards
Importance of pathologies for understanding pain?
Winslow, M., J. Seymour, and D. Clark, ‘Stories of Cancer Pain
The second half of the 20th century saw major advances in the understanding, identifi- cation, and pharmaceutical management of pain in people with cancer.2 Yet, to obtain meaningful knowledge of the exceptionally subjective experience of cancer pain—to under- stand “the pain attached to being in pain”— the voice of the sufferer has also to be heard.
The growth of pathologies, or ‘cancer narratives’
Winslow, M., J. Seymour, and D. Clark, ‘Stories of Cancer Pain
- ‘scarce’ in 40s/50s
- ‘growing interest’ in 60s
- 70s and 80s, expansive
- 1990s, new medium, the internet
Why do people write pathographies?
Winslow, M., J. Seymour, and D. Clark, ‘Stories of Cancer Pain
- a desire to extend support to those in comparable situa- tions, ie patient’s families
- to tackle the stigma that surrounds the disease
- the desire to indicate where care can be improved or to expose unacceptable care.
- Jackie Stacey: ‘with others knowing, am I finally allowed to forget?’
- to ascribe meaning to pain and cancer
Anne H. Hawkins’ three categories of pathographies
Winslow, M., J. Seymour, and D. Clark, ‘Stories of Cancer Pain
- ‘didactic’: stories of illness to help others, 1960s/70s
- ‘angry’: to ‘expose and denounce’ bad practice, dehumanising medicine
- pathographies advocating alternative modes of treatment
- “ecopathography,” links a personal experience of illness with larger environmental,political, or cultural problems. In these books, illness (usually AIDS, certain cancers, or chronic fatigue syndrome) is perceived as cultural dis- ease, “the product of a toxic environment,”
a changing view of the patient in pathographies of the 20th century?
Winslow, M., J. Seymour, and D. Clark, ‘Stories of Cancer Pain
At the start of the period, patients showed a tendency to represent themselves as ‘objects’ of medical care who had treatment ‘done’ to them
How can pathographies help physicians who are stretched thin?
These narratives can be especially useful to physicians at a time when they are given less and less time to get to know their patients
Hunsaker, Hawkins on pathographies
By writing pathographies, patients not only restore the experiential dimension to illness and treatment but also place the ill person at the very center of that experience.
Hawkins on the value of pathography for the patient
‘seems to facilitate recovery: the healing of the whole person’
Hawkins on the value of the pathography for doctors
- They embody the patient’s point of view on a variety of aspects of a medical experience. -
- Longitudinal view of illness as it is experienced before and after the patient encounters the physician
- info about alternative treatments
- Reveal cultural attitudes and assumptions about illness, treatment, and recovery (eg, illness as a battle or journey)
The growth of blog pathographies?
Bingley et al., Making sense of dying
433 web sites and 92 published narratives
In what ways are pathographies a limited source base?
Bingley et al., Making sense of dying
published literature remains largely the domain of the professional
writer, journalist or academic, with occasional examples
of doctors, nurses and others in healthcare writing about
their own experiences
lack of narratives
about facing death as a result of heart disease or stroke
The moment of diagnosis in pathography: Rachel Clark
Bingley et al., Making sense of dying
Rachel Clark, diagnosed in 1995 at 25 years old
with a cancer from which she eventually died in 1998,
gives one of the more distressing accounts.42 She
discovered her diagnosis from a doctor who assumed,
wrongly, that Clark already knew. The doctor unfortunately
did not attempt to check how much Clark had
been told:
‘‘Now’’ she [the doctor] continued, ‘‘obviously the first
question you will have is how long have you got’’ she
looked directly at me ‘‘and I’m afraid I can’t tell you.’’
I was confused. What was she talking about? I looked
at my friend, her expression was one of equal
confusion. ‘‘I’m sorry’’ I started haltingly, ‘‘I don’t
understand what you mean. Do you mean how long is
it going to take until I’m better? How long the
treatment is going to take?’’ ‘‘No’’ she hesitated, ‘‘I
meant how long have you got to live’’….‘‘Please don’t go and jump off the Harbour
Bridge.’
The moment of diagnosis: Helen Scott Davies
Bingley et al., Making sense of dying
Helen Scott-Davies describes the delivery of her
cancer diagnosis as ‘blunt and direct’:
The phone call eventually arrived. As I have said, I
would like to say my news was delivered with
sensitivity…No softened paths for me. He said, words to this affect (sic) ‘‘the cells are cancerous and we need to fit you in to clinic as soon as possible. My secretary will be in touch tomorrow.’’ There was
no check to see if someone was with me, someone
capable of picking me up off the floor, where my life
had just crashed to pieces. By the way, I was alone at
the time, as it happens. p. 2
Anne Dennison, medical interaction
Bingley et al., Making sense of dying
(Dennison published issues of bad treatment –> relationship w. her doctor changes)
There was a relaxed friendliness, a warmth and trust between us that had been lacking before. I was partly
glad she had found out about the article but had
become rather guilty about how much I had hurt her.
Even that seemed to be healing. Towards the end of
the year I had a letter published criticising what I felt
to be a patronising series of articles about how doctors
should talk to cancer patients. I asked her whether she
had seen it and hastened to add this time it was not
intended to reflect anything about our relationship.
Discussions of death in pathographies - counter argument to medicalisation?
Bingley et al., Making sense of dying
‘In almost all narratives, the discussion of death, where
present, is a deeply personal one, rarely described as
involving any professional medical interaction.’
…the very individual spiritual perspectives…
The therapeutic aspect of pathographies?
Bingley et al., Making sense of dying
The narrative itself becomes an ally with which the narrator
is able to communicate freely, without judgement and
without fears of upsetting family or friends.
writing allows the narrator to work out feelings without risking the social isolation that can result from constantly verbalizing anxieties to distressed friends and relatives.
Frank on the value of Pathographies
Frank, A. W., ‘Reclaiming an Orphan Genre: The First-Person Narrative of Illness’, Literature and Medicine, 13 (1994)
a voice of experience rather than the expression of a medical gaze
Roy porter on historical distortion and medical history from below
ROY PORTER, ‘The Patient’s View’
it takes two to make a medical encounter -
the sick person as well as the doctor…medical history ought centrally to be about the two-way encounters between doctors and patients.
Roy Porter on why the suffer’s role in the history of medicine has been ignored
ROY PORTER, ‘The Patient’s View’
we lack a historical atlas of sickness experience and response, graduated by age, gender, class, religious faith, and other significant variables.
What does Roy Porter advocate for medical history from below?
ROY PORTER, ‘The Patient’s View’
we also need, as a counterweight, a patient-oriented history, or, to be precise, in the first instance a sick people’s or sufferers’ history
It can’t be done, critics might reply. You can only know about the sick through doctors’ eyes, their case histories and hospital records…Yet there is no reason why the history of the sick should prove any more
intractable than… any other sort of history “from below. ‘
What can pathographies reveal about medicalisation, according to Roy Porter?
ROY PORTER, ‘The Patient’s View’
Medicalization theory harbors another insidious assumption, the implication that the rise of medical power is in some sense ineluctable and unilinear, the ghost train speeding down the old Whiggish mainline from magic to medicine.
But a people’s history of health will show something much less monolithic…sufferers are fertile in their resources, and that feedback processes sometimes mean that medicalization boomerangs back on the faculty, as patients borrow the doctors’ lines.
Really crap John Diamond review in the BMJ which exemplifies exactly why we need medical history from below…
what qualifies his book in particular as a medical classic? Although he was not medical, what he did was to crystallise several truths about what it means to be a physician: essentially that patients place a huge amount of trust in us, and we have the capacity to harm as well as help them. He may have written for his own catharsis, but his legacy is to reinforce for the rest of us our sense of the privileges and weaknesses of medicine.
J. O’Neill, A Peaceful Death
staff were unaccustomed to dealing with many dying patients…Overall, the medical staff, with exceptions, communicated poorly…parsimonious in their prescription of symptom relieving medication
Listen to the dying patients and their families.
At no stage during my father in law’s final hospital stay did a doctor sit down and discuss his condition with us, to find out what he and we did or did not want at the end of his illness.
John Diamond
- ‘My cancer was, said Mr Mady on the phone that night, a squamous cell carcinoma…Not knowing about the 57 varieties, all I heard was that I had cancer.’
