Medication and participation
A qualitative study of patient experiences with
antipsychotic drugs.
Geir Lorem
Study aim
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User experiences with treatment
Their participation/influence in decision-making processes regarding
own treatment
How do they perceive the relationship to clinicians
Why do we write about
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Medication
Involuntary treatment/care
Stress
Developing the perspective
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There is an increased emphasis on the patient perspective, that is, the
patient’s sense of autonomy and empowerment.
Studies suggest that it is essential to take advantage of patients’ internal
resources and that individual action plans can empower patients and
improve their experience of care.
Different variations on patient adherence
COMPLIANCE
CONCORDANCE
• Actual use of drugs seen
against prescription
• Actual behavior seen
against medical
recommendations
• Result of taking the drugs
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•
Vermeire, E., Hearnshaw, H., VanRoyen, P., &
Denekens, J. (2001). Patient adherence to treatment:
three decades of research. A comprehensive review.
Journal of Clinical Pharmacy and Therapeutics,
26(5), 331-342.
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•
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More active form of
adherence
Treatment aims to generate
clinically meaningful
outcomes in agreement with
patient preferences and
goals
a composite of knowledge,
health beliefs and
collaboration
Snowden, A., & Marland, G. (2012). No decision about
me without me: concordance operationalised. Journal of
Clinical Nursing, n/a-n/a. doi: 10.1111/j.13652702.2012.04337.x
But …
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Despite these ideals, we know that many patients experience
pressure in ‘shared decisions’ (Haman, et al)
Other challenges for patient autonomy occurs when the patient is
temporarily ‘unavailable’ to provide valid consent (Appelbaum, 2004).
The link between psychosis and lack of insight is problematic to
user involvement (Grisso & Appelbaum 1996).
Expectation of meaning is crucial for communication with the
user (Lorem 2006;2008)
Question
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One could ask whether the expectations of the patients’ role is really in
accordance to patient centered medicine.
Project overview
Insight and user participation
Awareness, insight and
decision-making-competence
User experience with
participation
Evidence based and user based
knowledge
Sub study 1: 2006-2009
Post-doc:
Sub study 1: Ongoing
PhD project:
Sub study 3: Ongoing
PhD project:
Participants: Staff
Interviews
Results: Insight, cooperation,
understanding and awareness of suffering
Participants: users/patients with exp from
district psych. wards
Method: Interviews/narrative approaches
aim: user perspectives on insight and
participation
Participants: Staff
Method: Ethnographical study
(interviews, focus groups, participation)
Student project:
The importance of participation for
patients with psychotic disorders
Methods: Interviews/narrative
approaches
Results: Antipsychotics, coercion,
stress/coping skills
Aim: attitudes and praxis regarding
participation
Methods
•
Design
– This article reports findings from interviews with patients at a
hospital in Norway.
– Narrative interviews with 9 participants.
– Aiming to articulate their experiences, self-understanding and
assessment of situations
– Particularly useful in cases of a major life disruption that
participants wish and are able to describe through detailed
stories.
– Participants’ stories ranged from the episodic to more
complex, long-term events that could describe extensive
epochs in their lives.
– All had stories about medication and participation.
dology with an explanatory design (47) using interviews (48)
provide the stories. The explanatory design is used to provide
y means of why something happened. Thus, the explanatory
as perceived by the participants
of that phenomena
and reasons
Narrative
approaches
will be
Stage 6
Stage 1
ychiatric
Write a story
Identify a
about the
phenomenon
Stage 5
niversity
participants
Collaborate with
tment is
experience as
the participants
they relate to the
will be
Stage 2
phenomenon
Use purposeful
gned to
sampling coding
gatively
with the
Stage 7
Stage 3
pe with
Validate the
Collect stories
Stage 4
accuracy of the
ews will
about the causes
Restory or retell
narrative account
and reasons for
uestions
the phenomenon
essed in
helpful”,
ven harmful?”. We will also encourage them to bring one or
Defining the problem
Findings
Patient perspectives on drugs
Need for dialogue
Defining the problem
Patient perspectives on drugs
Need for dialogue
Need for information
– Little or no information
– It’s very important for the course of the disease that one has good information
in order to live with the disease. It’s not just drugs that are important but also
how you spend your life, that you pick up early signs of when things start
going a little wrong, and take action then, to prevent it going seriously wrong.
(Participant)
– Participation on daily basis
– I was treated as a person that was not supposed to hear anything, know
anything, think anything, and that should only be . . . well, like ‘vegetables’,
like plants [ . . . ] that need to be treated. And that cannot care for themselves,
and that are not supposed to participate in that. (Participant)
Defining the problem
Patient perspectives on drugs
Need for dialogue
Drug treatment
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Self-perceived improvement
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Perceived coercion
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Now: take this, and now: take that’, and I don’t know what I’m taking. They just tell me the
name of the drug and that doesn’t tell me anything. (Participant)
Troublesome side effects
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Most recalled experiences of not being listened to and having no influence on their drug
treatment during hospitalization: They just said ‘swallow’ and I wasn’t allowed to ask
questions about the drugs. (Participant)
Yes, you can refuse to take these tablets, but if you do, then there’s no reason for you to
stay here any longer. Then you’ll be discharged immediately. (Participant)
Lack of information
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They give me drugs that clearly work [ . . . ] They’ve had a good effect. I notice that, in my
daily living, I’m better now than I was before. (Participant)
I think I’ve tried all the drugs now, and it feels like that’s all I’ve done: Increasing and
decreasing dosages to see whether this or that kind suited me. (Participant)
The first thing he did was change my drugs. I hadn’t even spoken to him before he changed
my drugs. And it felt like I was . . . that the decisions were being made over my head. [ . . . ]
that I felt that nobody was taking any notice of me. (Participant)
Overemphasis on drugs
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Instead of talking to you about your problems or your fears or whatever you have or
don’t have, they say all the time that you should calm down until they’ve found the
right drugs for you. (Participant)
Defining the problem
Patient perspectives on drugs
Need for dialogue
Need for dialogue
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But no one talks to you there. Even if you’ve had a shock, something
terrible has happened to you, there’s nobody . . . who prepares you for
your future life that talks to you about it. [ . . . ] I think most people who
have a serious problem will respond positively if they have someone to talk
through the problems. (Participant)
It was just me and my problems that I had to focus on, right? It was pretty
terrible. I felt as if I was going to explode in that bed, in that damned bed. [ . .
. ] It’s not up to them to get your mind to switch off . . . when you’re
actually trying to tackle the problems. All they’re interested in is
‘turning you off’. But you cannot find solutions to your problems that
way. (Participant)
You know, I want to know things and understand quite a bit. They can
discuss things with me, and I want to work things out instead of being afraid.
[ . . . ] I always want to know what’s going on with me, what’s happened and
what I experience. [ . . . ] In order to calm myself down I need to find out
about what’s going on with me, and what they’re trying to do.
(Participant)
What is autonomy?
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The participants emphasized autonomy and control and wanted to be
heard regarding their previous medication experiences.
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Respect for patient autonomy implies that health personnel not only
acknowledge people’s right to hold views, to make choices and to take
actions based on their personal values and beliefs but also encourage or
maintain others’ capacity for autonomous choice. (Beauchamp and
Childress, 2009)
Making autonomous choices
– Therefore, informed consent implies three elements
Information elements
Threshold Elements
Consent elements
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Competence (to
understand and decide)
Disclosure (of material
information)
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Decision (in favour of a
plan)
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Voluntariness (in
Recommendation (of a
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Authorisation (of the
-
deciding)
plan)
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Understanding
(information and plan)
chosen plan)
Discussion:
Why do they not make their own choices?
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The most interesting part, they do not fall into the patient stereotypes
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It is the meds that make me ill …
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When they complain about the drugs, the main complaint is that the staff
has not followed the ordinary concerns to assure autonomy.
In a sense, they expect what we all expect when it comes to medical
decision. To be informed, to choose, and that the choices are respected.
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Discussion:
Debrief and Advance directives
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Advance directives allow patients to appoint surrogate decision-makers
and to make treatment choices in advance should they later become
incompetent.
They aim to increase autonomy by encouraging patients and clinicians
to discuss future mutually acceptable approaches to care.
» Appelbaum, 2004; Szmukler & Holloway, 2000
Debrief and dialogue
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Patient preferences could be reconstructed by
– (a) considering past and present wishes and the factors that
person would consider if able to do so,
– (b) permitting participation and improving the ability to
participate in any decision affecting the patient,
– (c) consulting the views of other appropriate people who have
a reasonable understanding of the patient’s wishes and
interests, and
– (d) assessing whether the purpose for which any action or
decision is required can be as effectively achieved in a
manner that restricts the individual’s freedom of action less.
» Szmukler and Holloway (2000)
Involuntary treatment
(Good coercion, patient moral evaluation of involuntary treatment)
Elements of moral evaluation of coercion
Conclusion
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Improving the elements of consent will not only strengthen
participation but may also lead to better relationships and thus
better experiences with clinicians.
use debriefing to help summarize and provide two-way feedback
on the patient’s positive and negative experiences
Background
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Follow up on insight
– The first project focused on break down of communication, and the
isolation that it entails.
Now we asked clinicians:
• What is insight?
• How do you know that a person lacks insight?
• And what do you do then?
Insight
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General opinion:
– To know that you have an illness, knowing what it is, and how to deal
with it! (participant, psychiatrist)
» Lorem, G. F. (2009). The Patient Experience with Psychosis as Seen
from the Helper’s Point of View. In K. R. Myers (Ed.), The Patient Global Interdisciplinary Perspectives (pp. 103-124). Oxford: InterDisciplinary Press.
Insight
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The MacArthur group’s opinion
– Understanding relevant information
– Recognize need for assistance
– Understand the consequences of the choices
– Being able to communicate a choice).
» Appelbaum, P. S., & Grisso, T. T. (1998). Competence to consent to
voluntary psychiatric hospitalization: a test of a standard proposed by
APA. American Psychiatric Association. Psychiatric services, 49(9),
1193-1196.
Insight
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The clinicians’ stories
– a far more nuanced picture is revealed.
– Insight is connected to how the patient function and copes with
everyday life
– Compliance and cooperation.
– Human aspects: There are key aspects of the patient experiences
escapes the medical language, and that these are crucial to
understand their choices, actions and suffering.
» Lorem, 2009
Insight
Behaviour
Intentional
actions
Adherence
Rationality
The
patient
Social life