Patient Autonomy
Patient Autonomy: In Policy, Out of Practice
Arnav Agarwal* 1
Vanessa Ha HBSc 2
Correspondent Email: arnav.agarwal@learnlink.mcmaster.ca
1 Faculty
of Health Sciences, McMaster University
1280 Main St. West
Hamilton, Ontario, CANADA
2 Department
of Nutritional Sciences, Faculty of Medicine, University of Toronto
150 College St.
Toronto, Ontario, CANADA
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Patient Autonomy
Conflicts of Interest
VH received a Province of Ontario Graduate Scholarship.
AA declared no conflicts of interest.
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Patient Autonomy
Patient Autonomy: In Policy, Out of Practice
The pendulum has swung to the other side. For centuries, most of healthcare
was dominated by a paternalistic approach. While healthcare professionals have the
interest of patients’ well-being at heart, it is only recently that healthcare has transitioned
towards an approach emphasizing patient autonomy. Current medical education and
training emphasize the three ethical pillars of medical care: autonomy, beneficence, and
non-maleficence. While, in theory, these principles complement one another, there is
often a lack of cohesiveness in their application in medical practice, creating a void
between
policy
and
procedure.
The
line
between
professional
and
ethical
responsibilities is often blurred in defining a healthcare professional’s role, with the
principles of autonomy and beneficence in conflict in attempting to secure the best
interests of the patient.
The Emergence of Patient Autonomy in Clinical Policy
Approaches to conflicts between beneficence and autonomy differ across
healthcare systems based on societal, economic, political, and cultural contexts. 1 While
numerous systems have maintained a paternalistic approach, Western medicine has
placed patient autonomy as one of its priorities. The paternalistic approach emphasizes
the physician’s position as an omniscient caregiver who has the primary influence over
what is best for the patient and the necessary course of action, even at the expense of
the patient’s decision-making capacity. However over the past 40 years, pitfalls in a
healthcare system focused solely on physician input have been identified. The difficulty
in assessing and identifying the best interests of the patient, the risk of stereotyping
based on the physician’s perception of characteristics such as their race or sex, and the
lack of opportunity for patients to consider their treatment options with a more wellPage 3 of 11
Patient Autonomy
rounded contextual understanding of their circumstances, are several of the
determinants which facilitated the transition away from medical paternalism.
The shift towards patient autonomy, however, has been dramatic in nature, with
studies identifying a tendency in some physicians even to go to great lengths in order
not reveal a preference for a particular treatment option, thereby leaving the patient to
reach a decision without any guidance whatsoever deliberately. 1 While this approach
emphasizes patient autonomy, it places a burden on an individual who is likely to be
mentally and emotionally affected by the knowledge of their diagnosis and is likely to
lack the significant level of expertise in the field required in order to make an informed
choice on what is in their best interest.
In Policy but Not in Practice
Whether physicians and other healthcare professionals value their clinical
expertise over the patient’s decisions or view their role as primarily functioning to
provide the most optimal healthcare for the patient as possible, the preferences of the
patient continue to come second to the preferences of the professional on numerous
occasions despite pro-autonomy healthcare policy. It is likely that many healthcare
professionals believe that due to their expertise in the field, they are placed in a position
where they must take on both the responsibility of maintaining the highest quality of
care for a patient and accepting the implications of a patient’s decision. However it is
plausible that patients are aware of the treatment that is in their best interest,2 which
indicates the expertise to make healthcare-related decisions is not limited to those who
are qualified in the medical specialization.
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Patient Autonomy
The importance of patient participation in clinical decisions is central to clinical
policy and is encouraged in our current healthcare system, but patient autonomy has
not been as central a consideration in clinical practice as it has in theoretical clinical
guideline. In addition to the perception of patients not having the capacity to make
sound medical decisions, a large discrepancy exists between the priority assigned to
the patient’s wishes and requests relative to other considerations in medical decisions
guided by physicians.
While physicians value patient self-determination and autonomy and agree that
the wishes of the patient should usually be complied with, other concerns often
determine clinical practice especially in situations involving extreme outcomes. This is
supported in a survey study with 392 physicians, who were asked if they would comply
with the request of an 80-year-old competent but not depressed, male patient who was
well-known to them and was diagnosed with terminal metastatic lung cancer. The
results showed while approximately 98% of physicians would comply with withholding
intubation on request despite worsening respiratory failure and 86.3% would administer
potentially lethal doses of pain medication (narcotics) on request, however, only 59.4%
would turn off the respirator on request even if the patient had no hope of coming off it,
8.6% would agree to give a prescription for a lethal initial dose of sleeping pills, and 1%
would agree to the patient a lethal injection.3 The lack of adherence to patient autonomy
was often associated with concerns surrounding what it meant to be a physician.
Physicians often provided explanation based on ethical implications more so than on
legal or social concerns especially in situations involving assisted suicide and
euthanasia. The perception of “killing the patient” was also an important influence,
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Patient Autonomy
emphasizing the physician’s understanding of their responsibility: beyond all, to provide
care for the patient and ensure their well-being above allowing decisions at the cost of
personal harm.3
Although patient autonomy is a major consideration in medical practice,
approaches involving absolute prioritization of the patient’s desires have received
significant criticism. Only 55% of primary care physicians gave the patient’s expressed
wishes and values “the highest possible weight” when weighing the importance of
factors to consider in making an ethically complex medical decision.4 While 40% of
physicians named autonomy as their dominant concern, with other considerations often
being weighted very heavily as well, thereby drawing into question whether the degree
of importance attributed to the principle in theoretical ethics literature is visible in clinical
practice.4
While it might appear that the preference for autonomy-based healthcare is
patient-driven, the results of several studies show that patient decision-making
preferences vary based on several factors. In a study conducted by Ende et al., older
patients were identified to have significantly less desire than younger patients to make
decisions and be informed of their condition. Furthermore, lower sociodemographic and
educational status, higher severity of disease, less favourable health status, more
satisfaction with decisions being made, and more satisfaction with overall medical care
quality were also correlated with a decline in patient desire to make decisions. 5
Cultural and societal influences often play a major role as determinants of the
significance of patient autonomy and the appropriate amount of information-sharing by
the physician. These factors shape the expectations of the patient and the physician
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Patient Autonomy
and subsequently, the clinical practices in these societies. A comparative questionnairebased study between American and Japanese physicians and patients showed while a
majority of American physicians and patients agreed that patients should be informed of
an incurable cancer diagnosis and that a terminally-ill patient wishing to die immediately
should not be ventilated regardless of physician and family wishes, only a minority of
Japanese physicians and patients agreed with both decisions. 6 Despite identifying that
all four respondent groups placed greatest authority with the patient and placed
physicians with less authority than even the patient’s family, the study demonstrates that
cultural context might influence the significance of physicians in clinical decision-making
and the value placed on patient autonomy varies by patient population. 6
Disadvantages of a Purely Autonomy-Based Approach and the Need for a New
System
Patient autonomy has emerged to overshadow a predominantly paternalistic
medical healthcare system in policy, representing a transition in decision-making power
from those serving to those being served. While the model was proposed to encourage
healthcare professionals to involve their patients in clinical decisions, some healthcare
professionals may be passive and flexible in their guidance and treatment, essentially
leaving patients to make the decision free from their influences.7 Despite the benefits of
empowering the patient with the ability to play an active role in shaping the care they
receive, this approach carries several disadvantages. Firstly, patients have limited
medical knowledge and are often overwhelmed with the diagnosis. This is often a
product of a lack of awareness regarding both the condition they have been diagnosed
with and the benefits and potential side-effects of the treatment options that are
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Patient Autonomy
available to them. In theory, healthcare providers are responsible for the provision of
objective information on the various options present to a patient in terms of their relative
effectiveness as treatment options and any significant risk factors they should assess in
making an informed decision. However, this approach relies heavily on effective patientphysician communication and a strong patient understanding of various medical
complexities, and places an additional burden on the patient in terms of establishing a
decision without a sound background understanding of the medical implications of this
choice. Secondly, healthcare providers who have gained adequate medical training and
expertise are left out of this process, impeding the quality of patient care due to a lack of
guidance in decision-making and overall involvement in shaping the course of
treatment.
Therefore, while the paternalistic system represents a significantly physicianoriented and dominated medical approach, the autonomy-based model represents an
overreliance on patient input. The two models of healthcare embody the consequences
of contrasting medical care approaches, one rendering the patient insignificant in
decision-making and the other excluding the application of physician expertise and
burdening the patient as a result.
As such, an effective model for clinical decision-making must incorporate a blend
of the two medical approaches in order to actively engage both the patient and the
physician. Under this model, an independent choice by the patient is encouraged, but is
enhanced by the input and support of a well-informed healthcare professional. Open
discussion and consensus-building allow both the provider and the patient to share
equal responsibility, albeit the former functions to provide guidance and amend
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Patient Autonomy
treatment plans identified by the patient as necessary, and the latter to make an
informed decision. While the theoretical efficacy of this healthcare model is sound, its
pragmatic effectiveness hinges on the identification of clear goals and potential barriers,
as well as a collaborative understanding and agreement on a well-rounded plan of
action to address these areas.8 Stewart et al. identified a more positive perception of an
experience with better recovery from their health concerns, improved emotional health
and fewer diagnostic tests and referrals, in relation to a patient’s perception of sharing a
common ground with the healthcare provider.9,10 These findings support the notion that
fostering an open physician-patient relationship not only influences the perceived quality
of care but also facilitates the establishment of mutual decisions through discussion and
consensus.
While most patients will prefer an open and honest discussion with their
healthcare providers, it is important that providers remember that patient-care should be
“patient-centered.” The provided care should be based on what the patient wants, not
what the physician wishes to see independent of input. Although not all physicians will
prefer an open discussion with their patients and will continue to ignore the significance
of patient autonomy in their patriarchal perspectives of the field, 11 a flexible model with a
balance between physician and patient responsibilities is fundamental to meeting the
needs of a diverse population and improving the patient experience.
References
1. Spevick J. Does medical uncertainty justify medical paternalism? Virtual Mentor
2003; 5(5).
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2. Sumner LW. Welfare, happiness and ethics.
Oxford, United Kingdom:
Clarendon Press; 1999.
3. Fried TR, Stein MD, O’Sullivan PS, Brock DW, Novack DH. Limits of patient
autonomy.
Physician
attitudes
and
practices
regarding
life-sustaining
treatments and euthanasia. Arch Intern Med 1993; 153(6):722-728.
4. Lawrence RE, Curlin FA. Autonomy, religion and clinical decisions: findings
from a national physician survey. J Med Ethics 2009; 35(4):214-218.
5. Ende J, Kazis L, Ash A, Moskowitz MA. Measuring patients’ desire for autonomy:
decision making and information-seeking preferences among medical patients. J
Gen Intern Med 1989; 4(1):23-30.
6. Ruhnke GW, Wilson SR, Akamatsu T, Kinoue T, Takashima Y, Goldstein MK,
Koenig BA, Hornberger JC, Raffin TA. Ethical decision making and patient
autonomy: a comparison of physicians and patients in Japan and the United
States. Chest 2000; 118(4):1172-1182.
7. Quill TE and Brody H. Physician recommendations and patient autonomy: finding
a balance between physician power and patient choice. Ann Intern Med 1996;
125(9): 763-769.
8. Lorig KR, Sobel DS, Stewart AL, et al. Evidence suggesting that a chronic
disease self-management program can improve health status while reducing
hospitalization: a randomized trial. Med Care. 1999;37(1):5-14.
9. Stewart M, Brown JB, Donner A, McWhinney IR, Oates J, Weston WW, Jordan J.
The impact of patient-centered care on outcomes. J Fam Pract 2000;49(9):796804.
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10. Bergeson SC, Dean JD. A systems approach to patient-centered care. JAMA
2006; 296(23): 2848-2851.
11. Little P, Everitt H, Williamson I, Warner G, Moore M, Gould C, et al. Preferences
of patients for patient centred approach to consultation in primary care:
observational study. BMJ 2001;322:468–472.
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