Autonomous Decision Making
Autonomous Decision Making
Autonomous Decision Making
Moral Capacities
Albine Moser, Rob Houtepen, Harry van der Bruggen,
Cor Spreeuwenberg and Guy Widdershoven
Key words: autonomy; decision making; diabetes specialist nurses; grounded theory;
hermeneutics; moral capacities
This article examines how people with type 2 diabetes perceive autonomous decision
making and which moral capacities they consider important in diabetes nurses support of
autonomous decision making. Fifteen older adults with type 2 diabetes were interviewed
in a nurse-led unit. First, the data were analysed using the grounded theory method. The
participants described a variety of decision-making processes in the nurse and family care-
giver context. Later, descriptions of the decision-making processes were analysed using
hermeneutic text interpretation. We suggest first- and second-order moral capacities that
nurses specializing in diabetes need to promote the autonomous decision making of their
patients. We recommend nurses to engage in ongoing, interactive reflective practice to
further develop these moral capacities.
Introduction
Patient autonomy is a leading principle in medical1 and nursing ethics.2 Feinberg3 distin-
guishes four different kinds of autonomy: autonomy as capacity, autonomy as actual
condition, autonomy as character ideal, and autonomy as right to sovereign authority.
In health care, autonomy is mostly conceptualized as the right to sovereign authority or
self-determination.1 Several authors question this conceptualization of autonomy and
a common theme in their criticism is that it is too individualistic because autonomy can
best be realized in relationship with others.4,5 Theorists68 describe various models of the
doctorpatient and familypatient relationship with different degrees of autonomous
decision making. In nursing, Peplau9 states that interpersonal relationships can take
one of three forms: participation or interdependence with the nurse; independence or
isolation from the nurse; and helplessness or dependence upon the nurse. Millard et al.10
examined the extent of patient involvement in decision making, which can be classified
as an involvingnon-involving continuum. Schoot et al.11 explored the patientnurse
interaction with respect to patient-centred care from the patients perspective. They
Address for correspondence: Albine Moser, Department of Health, Ethics and Society, School
for Public Health and Primary Care, Faculty of Health, Medicine and Life Science, Maastricht
University, PO Box 616, 6200 MD Maastricht, The Netherlands. Tel: +31 43 38 811 28;
Fax: +31 43 36 709 32; E-mail: a.moser@hes.unimaas.nl
found six patterns of actual interaction: toeing the line, reluctance, consent, dialogue,
consuming, and fighting. Reust and Mattingly12 identified three roles that families
play in medical decision making: supporting the patient during the process of decision
making, being affected by the decision, and advocating for the patients interests, rights
and autonomy. Bailey and Kahn13 explored spousal helping behaviour as described by
people with diabetes. They exhibited four response patterns: grudging acceptance of
help, grateful acceptance of help, respectful rejection of help, and punitive rejection
of help. The literature shows that autonomous decision making in the nursepatient
and familypatient context is a complicated matter. The perspectives on autonomous
decision making in the literature are often theoretical14 and it is common to describe
the basic ethical principles on a theoretical level rather than in relation to the process
as it happens in the actual nursing context.15 Empirical literature concentrates on the
extent of involvement. Little is known of the process of autonomous decision making
by patients. We wanted to look at the practical performance of nurses by examining the
capacities patients see as necessary to support their autonomous decision making.
From an educational perspective, there are three domains of competence:16 know-
ledge, skills and attitudes. Nursing textbooks consider nursing competency to encom-
pass technical knowledge, practical skills, and knowledge of procedures, as well as
moral character and professional etiquette.17 Tronto4 conceptualizes four moral qual-
ities necessary to providing good care: attentiveness, responsibility, competence and
responsiveness. Empirically, competency frameworks have been developed from an
educational and professional perspective.17,18 Schoot et al.19 studied nurses compet-
encies from patients perspective. These were: attentiveness, responsiveness, being a
critical partner in care, and being a developer of patient competencies to participate in
care. In this article, we decided to label these diverse but overlapping skills, qualities
and competencies as moral capacities. The literature provides much information from
an educational, ethical and professional perspective. However, currently, we have
limited knowledge of what capacities nurses need to support patient autonomy from
the patients perspective.
The purpose of this article is twofold: to analyse patient perspectives on decision-
making processes relevant to patient autonomy, and, based on these perspectives, to
identify the moral capacities nurses need to promote patient autonomy.
and medical history, reading and interpreting diabetes diaries and laboratory results,
organizing and co-ordinating care for individual patients, such as referral to other care
providers, and providing information and advice.25 Patients receive care that is a com-
bination of medical treatment and advanced nursing care. They see the DSNs regularly
and have a check-up once a year at their general practitioners practice or with their
endocrinologist. Patients may contact the DSNs by phone during business hours.
Theoretical orientation
The theoretical departure point for this article is Competency in shaping ones life,20
which describes how older adults with diabetes view their autonomy. Competency
includes recognizing possibilities and having the abilities, capacities, and expertise
that enable people with diabetes to shape their own lives. To shape their own life with
diabetes means that they actively strive for the right degree of autonomy based on their
unique character, and are flexible with regard to changing health conditions and life
situations. Competency implies that people with diabetes initiate and complete various
actions daily. These courses of actions are conceptualized as dimensions of autonomy.
We found seven dimensions of autonomy: identification, self-management, welcomed
paternalism, self-determination, shared decision making, planned surveillance, and
responsive relationship. The diverse dimensions of autonomy are related to one
another in various ways. The combination of the dimensions of autonomy is not fixed,
but rather a mix of what seems most appropriate at a given time. Each of the seven
dimensions highlights one aspect of autonomy and specific processes supporting it.
In this article, we deepen our analysis. We focus on the dimensions of self-
determination, shared decision making and welcomed paternalism as they relate to
professionalpatient and familypatient relationships. We selected self-determination
as the traditional hard core perception of autonomy, welcomed paternalism as an
unlikely and possibly suspect kind of autonomy, and shared decision making as the
middle ground between the two seemingly opposing dimensions. In particular, we
focus on the interactive aspect of decision making.
Method
The grounded theory method
All 15 participants in this study were Dutch and lived in or around the city of
Maastricht. These older adults had a confirmed diagnosis of type 2 diabetes for at least
one year before the study began, had a stable but complex health condition, were living
independently at home, had been enrolled for at least one year at the nurse-led shared-
care unit, and were capable of completing an interview of about 1.5 hours without cog-
nitive impairment or severe geriatric symptoms (diagnosed by a physician).
The interview guide consisted of open-ended questions directed towards aspects
of autonomy related to daily life in its broadest sense. We asked: How would you
describe the care you receive for your diabetes? or How would you describe your visit
to the nurse? The participants were encouraged to provide examples to support their
statements and researchers asked follow-up questions. When discussing the visit to the
DSN, follow-up questions were, depending on the interview context: What did you
talk about? or Who took the initiative to raise this topic? The interviews were tape-
recorded and transcribed verbatim. Field notes were made concerning observations and
impressions during the interviews and informal conversation after each interview.
The participants gave written informed consent prior to the interviews. They were as-
sured that the interview data would be dealt with confidentially and anonymously. The
Ethics Commission of the University Hospital Maastricht and Maastricht University
gave approval for the study.
Using grounded theory, we broke the data into smaller parts. Every line was coded
using open codes that were often descriptions used by the participants. We made as
many codes as possible to ensure broad coverage. Next, we compared and contrasted
the incidences and open codes and grouped them into categories, making sure that
categories included similar incidents and codes, which yielded increasingly complex
and inclusive categories. The phenomenon represented by each category was given
a conceptual name. Subsequently, we employed axial coding, putting the data back
together in new ways by making connections between the categories and subcategories.
Next, we used selective coding to select the core category and related it to the other
categories. We continued to watch for evidence in the data to develop the categories
further. Finally, we integrated the data to form a substantive theory. Theoretical samp-
ling26 involved asking specific questions about the emerging codes and categories in
subsequent interviews. First, we asked general questions, and later, more focused
ones. Memos were written about codes and categories and their inter-relationships.
After the analysis of 12 interviews, saturation was considered to have occurred. The
remaining three interviews were used to ensure that no new categories emerged. The
third author, who was not familiar with the literature, but a specialist in grounded
theory, analysed five interviews independently of the first author. This resulted in
good agreement. When there were differences in coding and interpretation the authors
went back to the original data to reflect on these by discussion until agreement was
reached. The analysis resulted in the development of a substantive theory of autonomy
consisting of seven categories, which we describe as dimensions of autonomy, and
several subcategories, including decision-making processes.
with the hermeneutic imperative of movement between the whole and parts of the text,
and back to the whole. We used the method of gaining understanding,31 a prerequisite
of which is the identification of ones pre-understanding of the topic. To make our pre-
understandings apparent, the authors team had conversations before and during the
text analysis. Our pre-understandings were based on a moral view on nursing and a
relational view on autonomy. A hermeneutic text interpretation occurs in several steps.
These steps are not mutually exclusive and may therefore happen simultaneously.
First, the transcripts of the patients interviews about decision-making processes were
read several times. Next, the first two authors independently formed, from the text as
a whole, a global interpretation of the normative implications for nurses behaviour.
This led to a focus on moral capacities. Subsequently, the text was studied sentence by
sentence for similarities as well as differences in the moral capacities DSNs were per-
ceived to need to promote patient autonomy. We identified moral capacities relating
to self-determination, shared decision making and welcomed paternalism. We also
found capacities that were common across these three dimensions. Next, we related the
moral capacities within the dimensions of autonomy in each text and then across the
dimensions of autonomy in the same text. After that, we compared the moral capacities
across all the text. In the final step, we related the moral capacities to the competency
in shaping ones life as a whole. This increased our understanding of the whole and the
parts and we were able to distinguish first- and second-order moral capacities.
Self-determination
Self-determination stresses making decisions and choices regarding ones own treat-
ment, health and behaviour, independently and without intrusion from others.20 Self-
determination in the nursepatient context consists of obtaining information from
the nurse and deciding for oneself, and in the familypatient context of obtaining
information through self-monitoring, reasoning and deciding for oneself.
Nursepatient context
Obtaining information from the nurse: Patients need relevant nursing, medical and diabetes
care information. They obtain this from DSNs. If patients as well as the DSNs want to
obtain further information, they ask each other specific treatment-related questions.
If there is a need to change something in my treatment plan the nurse explains this to me
quite clearly: if you go on like this you will encounter this and this problem. If you do that
then that will happen. I will give you an example. My average glucose indicator is slowly
increasing. She told me that oral medication is no longer sufficient. If the parameters are
constantly high I will have health problems with my eyes, kidneys, and in the worst case,
chronic wounds. If I start using insulin, the HbA1c will decrease and it will have a positive
impact on my body.
Deciding for oneself: Patients decide on the therapy and choose the treatment option
they think is best. In some cases patients do not agree with the proposed options. They
may decide autonomously and act against the advice of the DSN.
She [nurse] tells me what she thinks about the parameters, what she knows and what she
thinks should happen. Then I make the decision.
Familypatient context
Obtaining information through self-monitoring: Patients obtain information and knowledge
of their diabetes by monitoring their blood parameters and physical symptoms.
Monitoring also includes observing, watching and listening to body clues.
I observed that my condition was becoming worse. I am out of breath quite quickly ... Last
year when I was on vacation ... I climbed up the mountains and had to rest a lot.
Reasoning: Patients weigh various arguments and behavioural options against each
other. Their reasoning also involves personal preferences and care requirements. They
also consider the consequences of their decision.
Sometimes I visit friends. They offer me a glass of wine. It is nice to drink wine with friends
but I know that wine is not good for my diabetes. It increases my sugar level too much.
Deciding for oneself: Patients decide how to deal with the situation. They do not involve
family members. They take control over their own decisions and feel responsible for
the diabetes care plan.
I do everything [diabetes care] myself without any assistance. Its not my husbands
business ... I decide by myself.
Nursepatient context
Confiding: Patients are encouraged to confide in DSNs about their health problem to
shed light on their experiences, perceptions, feelings and expectations with regard
to the diabetes and their overall health. DSNs react by giving information about, for
example, treatment options, potential risks and benefits, depending on the issues raised
by patients. Both the DSN and the person with diabetes actively share information and
the conversation is a dialogue.
I tell the nurse how I feel and how I have felt since the last visit. We speak not only about the
results of my blood parameters and physical examination, but also about everyday things
I experience. We speak about my emotional feelings, too. I think that emotional distress or
well-being has some influence on my diabetes. For me it is important that the nurse knows
about these things too because she can interpret and explain the findings more accurately.
She takes time and attends to my concerns, which makes me feel comfortable.
Building consensus: The patient and the DSN actively participate in the discussion on
care and treatment preferences, opinions and views. The patient probes the information
presented. Consensus building can be quite time consuming and may last for more
than one visit. If views differ, negotiation is likely to occur.
The HbA1c parameter was around 10.9. Oral medication did not work any more and my
nurse told me that the best option is to use insulin. I was upset. My reaction was: Must
I do this? and, Are there no other tablets? She explained to me that insulin is better for
my health, that I will feel better, and that my condition will improve. She gave me some
time to think it over ... But injecting insulin did not decrease the HbA1c. I was quite upset
again. We started discussing it all over again. She explained to me why this parameter was
still not decreasing and she proposed to stop oral medication slowly and to increase the
dose of insulin accordingly. I did not want to inject more insulin but the nurse explained
to me what was going to happen if we changed my treatment plan again and why the
combination of insulin and oral medication did not work out.
Reaching consensus: Patients and DSNs reach consensus about a care decision that
satisfies both. The goal is to reach a decision that is best for the person with diabetes. If
necessary, both patients and DSNs take on responsibilities to carry out care activities
or treatment.
We speak about what is the best for my problem. In fact, my nurse says what she thinks
I might want to do. Then we speak about it. Sometimes we have discussions. If I am
convinced that her advice is good for me I consent. I need to think it through before we
reach consensus. It makes no sense if I get prescribed medication and I do not take it.
Familypatient context
Expressing views: Patients and family caregivers express their opinions, preferences,
fears, hopes and beliefs about diabetes care issues. Spouses, too, express personal
thoughts and feelings that are part of an intimate relationship. They may be influenced
by the diabetes or have an impact on diabetes care in the family context.
Some time ago I had some problems with my kidneys. It took more than a year for us to
know what was going on. My husband and I experienced a lot of tension. After some time
we spoke about it. I told him about my feelings and opinions and he spoke about his point
of view.
Debating: Patients and family caregivers debate about care issues. They question their
preferences, fears, hopes, beliefs, dislikes, perceptions and views. Both participate and
are open to each others contributions.
My husband is a bit too caring every now and then. He says that he worries a lot about my
diabetes and health condition and what will happen to me later. Sometimes this makes me
uncomfortable. I tell him: Dont talk about it all the time. You can help and remind me
but not every moment of the day. We were in a restaurant and when the soup was served
he commanded: inject insulin! This is not necessary. I do try hard not to forget to take it.
I say: It is better if you give me a little hint. It is true that when there is a special event I
sometimes forget about the diabetes and then it is nice if he takes care.
Agreeing: Family caregivers and patients agree on care decisions and how to implement
them. In most cases, both the patient and the family member work together to reach and
implement an agreement. However, this does not necessarily mean that the agreement
and the implementation will have the desired effect, and patients and family members
might, again, engage in expressing their viewpoints.
Welcomed paternalism
We speak of welcomed paternalism when patients defer to someone with expertise to
make an informed decision on their behalf, or simply when they want others to decide
for them.20 These people freely transfer or delegate some of their decision making to
another person. They express their wish for others to tell them what to do, or express
their satisfaction with such a procedure. Welcomed paternalism in the nursepatient
context consists of giving information to the nurse, allowing the nurse to decide and
accepting the nurses decision. In the familypatient context this consists of being
supervised, being reminded and complying.
Nursepatient context
Giving information to the nurse: Patients give requested information on an ongoing basis
to DSNs so that they can assess care issues. DSNs ask questions related to patients
experiences since their last visit, such as hypoglycaemia, etc. They also collect data,
such as on physical examinations and biomarker results. Patients participate mainly by
answering the DSNs questions and presenting their diabetes dairy.
I enter the room and then the nurse asks: How are you? She explains the results of the
blood indicators to me. She makes comments on them like: Cholesterol was OK. Then she
checks on my sugar profiles, which I write down in my diabetes diary. She tells me if she
is satisfied. Then she checks my weight and blood pressure.
Allowing the nurse to decide: DSNs decide for patients. They offer solutions to care or
treatment problems. The DSNs choose treatment they think will best deal with patients
health problems.
In January I used 42 units of insulin in the morning. I have had some hypos. She told me to
inject only 38 units. She also decided not to decrease the dose of insulin in the evenings.
Accepting the nurses decision: Patients accept nurses treatment decisions and imple-
ment the therapy options that the nurses favour. They incorporate the proposed
care interventions into their diabetes care regimen accordingly. In some cases, DSNs
further support implementation of their decisions by carrying out appropriate diabetes
treatment.
Last time she told me that I had to inject insulin into my thighs. She examined my belly
and explained that the skin has grown too thick and does not absorb insulin anymore.
The glucose day profiles have also increased. She wanted to see how I inject insulin and
she was not satisfied. She demonstrated how to do it in the right way. Since then I have to
inject insulin into my thighs.
Familypatient context
Being supervised: Family caregivers supervise behaviour or actions of patients with
diabetes. This does not mean that they constantly observe their relatives. Generally,
close relatives know the weaknesses of their diabetic family members and in which situ-
ations they have problems adhering to the regimen. Family caregivers pay special atten-
tion to their behaviour in such situations. They also watch the health of their relatives.
I like to eat. Especially in the evening when I watch TV I need to eat something. I prefer
cheese to sweets. My wife keeps an eye on me.
Being reminded: Family caregivers remind patients to follow their treatment plan. Some
people do not experience this as negative; they appreciate it if family members remind
them to act in accordance with their care requirements.
My wife reminds me to take my medication or she tells me to go for a walk if the weather
is nice. She also reminds me to watch my diet. Every now and then she reminds me not to
eat too much meat. She knows that my cholesterol is a bit too high.
Complying: Patients comply with what their family caregivers tell them to do. Family
members also take on roles that help their relatives to conform with their treatment
and life-style requirements.
In the morning before breakfast he [husband] says: Dont forget to measure your blood
sugar level. Only after I have measured my blood sugar do we start having breakfast.
Sensitivity
DSNs need to be able to assess patients needs and wants, and determine which aspect
of autonomy is at stake in a specific situation. They should respond to individuals
course of action. Needs and wishes will differ among patients and at different times
within the same relationship. Sensitivity in self-determination requires that DSNs give
patients all the necessary medical and nursing information that is lacking. Sensitivity
in shared decision making includes that DSNs should engage in dialogue with patients
with diabetes and/or their family members. DSNs are willing to discuss which therapy
would be best and are able to follow the flow of such a conversation. Sensitivity in wel-
comed paternalism means that DSNs supply patients with appropriate decisions. They
invite patients to consent to and follow the proposed therapy. In all three dimensions,
DSNs are sensitive to the different means that patients require to pursue autonomy.
Sensitivity involves providing information, dialogue or a ready decision.
Flexibility
DSNs act within the context of a particular situation. They have to be able to adapt their
approach to promote autonomy in different circumstances. They should be flexible in
each nursepatient encounter and need to fine-tune the aspect of autonomy at stake
to fit any given situation. This gives an indication of what kind of commitment and
sensibility is required. Flexibility is of special importance because the nursepatient
interaction is dynamic as the decision-making process can change within a single inter-
action or perhaps during the next nursepatient interaction. Patients wish to involve
their family caregivers may also change, for example, when their health situation
deteriorates. Hence, flexibility cannot be seen apart from commitment and sensibility.
and care. In this way, patients and DSNs values gradually become evident. DSNs
should allow enough time with each patient to satisfy his or her needs (informational
and emotional) and to come to a decision. This could extend beyond one consultation.
Frankness: DSNs should be approachable and willing to enter into a dialogue with
their patients. Frankness includes active listening, open interaction and candid
conversation.
Mediation: Mediation relates to the family context. DSNs need to be aware of roles
within diabetic patients family networks and be able to work with these family
members regarding care decisions.
Welcomed paternalism
Guidance: DSNs need to be able to direct the whole process from gathering and giving
information to making the final decision. This requires them to take the lead, for
example, by informing patients to increase the number of units of insulin.
Familiarity: DSNs should be acquainted with the care and life circumstances of their
patients. This better equips them to get to know their patients well and identify their
wishes and needs in relation to treatment and autonomy preferences.
Inclusiveness: This capacity is closely related to the family context. DSNs should be able
to take patients care, social and environmental conditions into account when making
decisions. This includes possibilities for families to support their relative in daily care.
Discussion
Our findings were derived from patients experiences of actual nursing practice and
they fit into more general frameworks of decision making and moral capacities. Our
interpretation of welcomed paternalism as an expression of patient autonomy differs
from the ethical theoretical view, in which paternalism is conceptualized as the opposite
Conclusion
People with diabetes describe several decision-making processes in nursepatient and
familypatient interactions concerning self-determination, shared decision making and
welcomed paternalism. Each process outlines differently how people with diabetes
attempt to achieve their autonomy. From patients perspective, DSNs need several
first- and second-order moral capacities to support their autonomous decision making
effectively, given its range and complexity. Thus, DSNs can improve autonomous
decision making of patients by cultivating their own moral capacities and by reflecting
on their performance. Further research is required to study nurses evaluation and
deliberation processes in order to learn as much as possible about moral capacities and
to maximize their cultivation.
Recommendations
Specialist nurses function in an intermediate position because traditional boundaries
between nursing and medical care are becoming increasingly blurred. Unfamiliar and
new ethical issues call for the kind of subtle and flexible capacities we have discussed.
Although our research setting is specific and moral capacities were developed bottom-
up, we believe that our findings are relevant and applicable to the nursing profession
at large. From an educational viewpoint, nurses must learn to understand which
capacity is relevant for a particular situation. Our research reflects a specific practice-
based approach to developing capacities in nurses. We believe that nurses mature
by learning first- and second-order moral capacities and their interplay in their daily
work. This can be achieved through reflection and deliberation. Much can be learned
about these and how to promote the autonomous decision making of patients by
collectively studying nurses narratives on good nursing care. All situations have an
ethical aspect36 and our overview may serve as a tool for deliberation. We recommend
institutional interactive reflective practice for nurses to promote patient autonomy.
This can be realized through sensitive and critical discussion of nurses narratives by
way of moral case deliberation37 or ethics meetings.38 Thus, both nursing education
and deliberation ought to incorporate collective reflection on actual nursing practice
situations, particularly if we want to do justice to the subtleties and contextuality of
supporting patient autonomy.
Albine Moser, Rob Houtepen, Harry van der Bruggen, Cor Spreeuwenberg and
Guy Widdershoven, Maastricht University, Maastricht, The Netherlands.
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