Talk to Joe

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Talk to Joe

• Regina McQuillan FRCPIUna MacConville PhD

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Documentary Research

• Analysis of written text
• Historical documents, peoples accounts, mass
  media, novels, plays, books, personal
  documentation.

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Documents

• Primary, secondary, tertiary
• Public/private
• Solicited/unsolicited for the purpose of the
  research

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Analysis

• Quantative
• Frequency of use of words
• Qualatitive
• The intended meaning of the author
• The meaning given to it by the potential audience
  (including the researcher)
• The text

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Liveline

• If people have a story to tell they phone
  Liveline
• RTE Website

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10 13 November 2003

• The whole issue of how to tell people, how and
  when to deliver the news and to whom to deliver
  it.
• Joe Duffy

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22 Callers

• 3 male, 20 female, 27 stories
• 8 parents of childen (including adult children)
• 5 adult children of deceased patients
• 3 relatives, not specified.
• 2 wives
• 1 sister
• 5 patients
• 1 professional

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Should a patient be told?
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How should they be told?
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The benefit or harm of communication
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Removing hope

• 3 callers strongly expressed views that
• telling a patient removed hope.

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• Everybody would like to have a wish, or like to
  have a hope that with new medicine and new
  technology and what-have-you that wed all have a
  hope, but for a doctor to turn around and say
  look, you have no hope. I certainly wouldnt
  like to be told that, I would always like to
  think there was some hope, but if a doctor is
  going to tell you, you know, youre going to be
  gone in three months, its too final (Caller 1,
  10/11/03)

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• I feel that cancer patients or any patient that
  has a terminal illness, they have to have hope,
  they have to have something to live with,
  something to make them go on. (Caller 2,
  10/11/03)

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• I think that, you know, that they should take
  more care in telling people, to make sure at
  least that family are there and also to ask the
  person if they did want to know, if they wanted a
  full consultation, that maybe they wouldnt want
  to know all the ins and outs of it. Because as
  lots of people pointed, how do you get up in the
  morning and have some sort of reason to get out
  of bed and you know, what are you living for if
  you know there is no hope, you know? (Caller 7,
  10/11/03)

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Patients reaction and who knows the patient best
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• Any doctor can decide to walk in
• and say to the patient Im sorry,
• Ive bad news without first
• consulting the family, or even asking
• the family will the man be able for
• it? or the person be able for it. (caller 1,
  10/11/03)

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• No matter how well a doctor knows a patient,
  you know, and if they have them for years they
  get to know them very, very well, he gets on very
  well with his consultants and doctors and nurses,
  he loves them but they still do not know a
  patient as well as a family knows them. And I
  think that a mother, father, sisters, anybody can
  judge better whether a person is able to carry
  this, able to take it and I think that they
  should be consulted
• (Caller 2, 10/11/03)

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False Hope
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The pressure of non-disclosure

•  

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• But we were now at a stage where I was running
  around like a headless chicken trying to control
  everything that everybody said to him and then he
  was in a place where he was losing trust in me
  and I mean I was going to have to look after him
  down the road and he needed that, you know we
  needed to have that trust back. (Caller 13,
  12/11/03)

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• when he was finally told that you know he was
  not going to get better and it seems to have, it
  seems to have grounded him in the sense that he
  knows you know, has trust in me again, he seems
  to have trust in the system again (Caller 13,
  12/11/03)
•  

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Autonomy
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• Often as adult children feel that we know best
  for our aging parents and I think thats being
  unfair to our aging parents. You know to take
  away your autonomy as an adult is to reduce you
  to the level of child again and I dont think
  that that is right. I would hate it if anybody
  did that to me and I would resist it very
  strongly (Caller 5, 10/11/03)

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Respecting patients dignity
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• If my family had been with me they would have
  been devastated and I think when somebody is ill
  you have to take into account your familys
  feelings and so not only would you have to cope
  with your own feelings in moments of crisis but
  you have to do what you can to reach out to your
  own family and to help them cope and that would
  have been an additional pressure that Im not
  sure I would have wanted. (Caller 5 10/11/03)
•  

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How it is done

• Callers described their experiences of how
  information was given
• This research is about the callers description.

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Bad Experiences

• Prostate cancer?
• Telephone

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• he is very good at his job but just doesnt have
  the manner for breaking bad news (Caller 12,
  12/11/03)

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• I was back in the hospital with him and this
  man walked in and he just said to my husband, he
  said are you married and he said yes, thats
  my wife there and he said have you any family?
  and my husband said well number one is on the
  way and he said well youre very lucky then he
  said because you know you wont have any more,
  for a young man like you, you frightened us
  today, you know you have cancer. (Caller 12,
  12/11/03)

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The Impact
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• it never leaves you
• (Caller 12, 12/11/03)

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• Im a nurse and I had worked in ICU for many
  years and had actually gone out with doctors or
  had been there when people were getting bad news
  and I always felt that I had empathy for people
  until unfortunately you know eighteen months ago
  I was on the receiving end of getting bad newsI
  remember thinking how silly I was all those years
  thinking that I understood how people felt and
  its only when you actually do, when you are on
  the receiving end, the difference. (Caller 9,
  10/11/03)

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Good experiences

• Awareness on the part of the doctor of how much
  the recepient understands
• Follow up information

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• My son was diagnosed with Hodgkins Lymphoma a
  couple of years ago, now thankfully he is well,
  but from the very day he first had his operation
  we had nothing but positive experience and
  openness and told what was going to happenall
  the time we were told, be honest with your
  child, tell him what is happening, they were
  honest with us, the first time I saw the
  consultant in Crumlin Hospital, she felt I wasnt
  taking in what was happening, she phoned me at
  home that night and explained everything to me
  again. (Caller 11, 11/11/03)

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Good Experiences

• Incremental Information

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• They always answered the questions he asked,
  you know they didnt volunteer the information
  but they answered the questionsso the doctor
  said I really think he needs to know, or he
  wants to know maybe, so he said Im going to
  ask, you know I always answer the specific
  questions, which is what he did. And over about
  three days he broke it to him and the registrar
  broke it first and then the oncologist from the
  hospice came in and she sat down and she broke it
  to him himself. (Caller 13, 12/11/03)

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Talk to Joe - Conclusions

• Analysis of the transcripts of the radio show.
• The role of the interviewer.
• Who is excluded.
• Capture aspects of the issues and provides
  insight and information.
• Reflects and creates social reality.