2.2.2 Patient Refusal of Information
Jonathan Breslin, PhD
Learning Objectives
1. To appreciate how cultural variations in decision-making can impact the informed consent process
2. To understand how to approach the informed consent process when a patient refuses to be informed
Case
Mrs. Ostrowski is a 77-year-old widow who emigrated from an eastern European country a few years ago to live
with her son and daughter-in-law, following the death of her husband. Although not completely fluent, she speaks
enough English to communicate fairly easily. She had been experiencing several weeks of indigestion and reduced
appetite, and after she began vomiting she agreed to let her son take her to the hospital. Diagnostic tests revealed
a diagnosis of stage 2 gastric cancer with evidence of lymph node involvement. Her prognosis is guarded: there is
a possibility of cure, but the standard treatment for her disease would involve total gastrectomy with adjuvant
chemotherapy. Her physician finds Mrs. Ostrowski alone in her room and begins the process of delivering the
diagnosis and discussing the treatment options. After the physician reveals the diagnosis, however, Mrs. Ostrowski
politely stops her and says: "Doctor, I don't need to know all this. I'll do what you think is best."
Questions
1. What are some of the reasons why someone like Mrs. Ostrowski might respond in this manner?
2. Does the physician have to force the patient to listen to the information to fulfill the physician’s obligation to
obtain informed consent for treatment?
3. Should the physician just seek consent from Mrs. Ostrowski’s son instead?
4. How should the physician proceed from here?
Discussion
Q1. What are some of the reasons why someone like Mrs. Ostrowski might respond in this manner?
It is important to understand that the current paradigm of decision-making based on patient autonomy (i.e., the
patient has the right to be informed and to decide what treatments to accept or reject) is a relatively recent
phenomenon in western health care, and one that is still not shared in many other parts of the world.1 This has
two important implications. First, it means that elderly patients may be more familiar with the traditional
paternalistic paradigm in which physicians were the ones who made the decisions and, as such, may not be
comfortable playing the role of the informed decision-maker. Second, it also means that patients who have
emigrated from other parts of the world where the paternalistic paradigm still dominates (such as many eastern
European and Asian nations) may also be more comfortable deferring to the physician's authority. It is possible
that both factors may be influencing Mrs. Ostrowski's response, since she is an elderly recent immigrant from
eastern Europe. However, it is crucial not to make assumptions or generalizations based on a patient's identifiable
cultural group. There can be significant variation in beliefs among members of the same cultural group, so the
right approach is always to ask rather than to assume. Of course, there may be other reasons why Mrs. Ostrowski
responded in this manner, and these would have to be dealt with in the appropriate way. For example, she could
be in denial of the seriousness of her condition or could be suffering from a depression or other form of cognitive
impairment.
Given the significant cultural variations in the desire for information and decision-making paradigms, automatically
revealing the diagnosis and beginning the disclosure process may be inappropriate depending on the patient. Some
patients may prefer that information is given to their family members first and then gradually revealed to them, or
they may not want to know that they have cancer specifically.1 An effective way to approach the issue of disclosure
in a manner that is culturally sensitive is called "offering truth,"​ whereby patients are given the opportunity to
receive information and are asked how much they would like to know about their condition before disclosure
begins.2
Q2. Does the physician have to force the patient to listen to the information to fulfill the physician's
obligation to obtain informed consent for treatment?
The requirement to obtain informed consent for treatment stems from the principle of respect for patient
autonomy: patients have the right to be informed and to make decisions based on that information. The right to be
informed creates a duty on the part of physicians to provide the necessary information. However, the duty to
inform patients does not translate into a duty to force information on patients. The right to be informed entails the
right to not be informed. Thus, physicians demonstrate respect for patient autonomy by respecting a patient's
desire to remain uninformed.
What complicates the issue in Mrs. Ostrowski's case is that there are treatment decisions to be made, and she by
definition cannot provide informed consent without the information. The requirement for disclosure of information
has been enshrined in legislation related to health care consent in several Canadian provinces. However, the
patient's "waiver" does not necessarily mean she has abdicated her right to make a decision; it only means that
she has chosen to base her decision on her physician's recommendation rather than on the information about the
treatment options. She is exercising her autonomy by making a decision to remain uninformed and pursue
whatever treatment option the physician recommends. Moreover, her wish to be uninformed at this point in time
does not imply a wish to remain permanently uninformed. At any point at which consent is required, it would be
prudent to revisit the issue with Mrs. Ostrowski to confirm that she still wishes to remain uninformed. Each of
these interactions should be documented.
Legally, the notion of a patient waiver with respect to consent has been addressed in some provincial consent
legislation but not others. Prince Edward Island's Consent to Treatment and Health Care Directives Act (1988)
allows patients to waive the right to information in writing, but waivers are not addressed either in Ontario's Health
Care Consent Act (1996) or British Columbia's Health Care (Consent) and Care Facility (Admission) Act (1996).
Physicians should seek advice pertaining to the legal status of information waivers in their jurisdiction before
proceeding.
Q3. Should the physician just seek consent from Mrs. Ostrowski's son instead?
As stated above, Mrs. Ostrowski's decision to remain uninformed does not amount to an abdication of her right to
retain control over her health care decisions. She also has the right to transfer decision-making authority to her
son if she wishes to do so, but she hasn't indicated that this is what she wants to do. Unless the physician believes
the patient is incapable of making the decision and needs her son to act as her substitute decision-maker, or gives
the physician explicit permission to do so, the physician should not obtain consent from her son. Legal
requirements regarding substitute decision-making may vary between provinces, so physicians should make an
effort to become familiar with the relevant legislation in their province.
Q4. How should the physician proceed from here?
Given what has been said above, the physician should make an effort to clarify whether Mrs. Ostrowski's waiver
relates to the information only or to her right to consent as well. If she indicates that she wants her son to make
the decision, then the physician can discuss the treatment options with him and obtain his consent for treatment.
However, if she indicates that she wants to provide her own consent but will do whatever the physician thinks is
best, the physician should clarify with her that different treatment options are available, each with its own risks
and benefits, and double-check that she does not want this information. The physician should communicate her
recommendation and rationale to Mrs. Ostrowski and, provided that the patient agrees, obtain her consent. It
would also be worthwhile to clarify exactly what Mrs. Ostrowski wishes regarding her son's role in her care: Does
she want to share decision-making with her son? Would she like the physician to share the information with him?
The physician should also document clearly in the patient's chart the content of this discussion and that she has
confirmed the patient's desire to remain uninformed. The physician should remind Mrs. Ostrowski that she can
change her mind at any time and should plan to revisit the issue with her prior to any intervention requiring
consent. Before proceeding, the physician should also seek advice regarding the legal status of consent waivers in
her jurisdiction.
References
1. Oliffe J, Thorne S, Hislop TG, Armstrong EA. Truth telling and cultural assumptions in an era of informed
consent. Family & Community Health 2007; 30(1): 5–15.
2. Freedman B. Offering truth: one ethical approach to the uninformed cancer patient. Archives of Internal
Medicine 1993; 153(5): 572–6.
Resources
Etchells E, Sharpe G, Burgess M, Singer PA. Bioethics for clinicians: 2. Disclosure. CMAJ: Canadian Medical
Association Journal 1996; 155(4): 387–91.
Etchells E, Sharpe G, Walsh P, Williams JR, Singer PA. Bioethics for clinicians: 1. Consent. CMAJ: Canadian
Medical Association Journal 1996; 155(2): 177–80.
Freedman B. A moral theory of informed consent. The Hastings Center Report 1975; 5(4): 32–9.