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On the Dilemma of Enigmatic Refusal of Life-Saving Therapy^*

^* From the Department of Bioethics (Dr. Bramstedt), and Critical Care Medicine (Dr. Arroliga), Cleveland Clinic Foundation, Cleveland, OH.

Correspondence to: Katrina A. Bramstedt, PhD, Associate Staff, Bioethicist, Cleveland Clinic Foundation, NA10, 9500 Euclid Ave, Cleveland, OH 44195; e-mail: bioethics{at}go.com

	Abstract

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When patients give no reason for refusing therapy (an enigmatic refusal), this creates the dilemma of whether or not to administer the therapy by force, especially when the therapy poses low risk and offers significant benefit. We argue that there is a duty to assess the patient’s decision-making capacity, as well as attempt to understand a patient’s reason(s) for refusing treatment. While some patients may not readily offer reasons for refusing treatment, this does not preclude an obligation for clinicians to inquire about such. The reasons for treatment refusal can be related to the patient’s goals, values, fears, and mental state.

Key Words: autonomy • decision making • ethics • paternalism • refusal • treatment

	Introduction

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In general, Western society respects an adult patient’s choices with regard to medical decisions as long as the patient has the functional capacity to make decisions, he/she has been informed about the therapy in question (eg, risks and benefits), and he/she understands the consequences of refusing therapies that clinicians feel are in the patient’s best interests.¹ Even if the reasons for rejecting a particular therapy appear "irrational," if such reasons are pronounced by patients with decision-making capacity, their wishes should be respected.² Interestingly, bioethics and medical literature is sparse on the matter of enigmatic refusals; that is, refusal of therapy without any reason given by the patient. In our experience, some physicians believe that the lack of voiced reasons does not matter, as long as the patient is adamant about not wanting the proposed intervention. But should the act of repeatedly stating one’s refusal be enough to require honoring the refusal? Should refused interventions be forced on patients in such situations? These can be difficult questions, especially when the intervention in question is low risk and offers much potential benefit (eg, esophagogastroduodenoscopy).

	Materials and Methods

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Case 1
A 77-year-old man with a history of throat cancer, tracheostomy, hypertension, depression, hypothyroidism, and diabetes presented to the emergency department with symptoms of an upper-GI bleed, and agreed to transfusion and esophagogastroduodenoscopy (revealing two ulcers). While in the medical ICU (MICU), the patient’s hematocrit and hemoglobin levels fell significantly, and the patient was approached for consent for another esophagogastroduodenoscopy. The MICU resident physician on duty deemed the patient to have decision-making capacity and accepted the patient’s adamant refusal, even though the patient offered no reason for his refusal and the resident did not inquire about any. A bioethics consultation was requested due to concerns by the gastroenterology staff physician that the patient was refusing an intervention that could prove life saving.

As part of the bioethics consultation process, the patient’s medical chart was thoroughly reviewed. There was mention of a history of depression, as well as the phrase "anxiety/coping" (however, no further information was given about this latter comment). During the patient interview, the patient indicated that he was sad and depressed and he did not want another esophagogastroduodenoscopy because the procedure scares him. He continued to refuse the procedure even when informed that he might die without it. Querying him further, he indicated that he felt too awake (and uncomfortable) during the prior esophagogastroduodenoscopy. He also indicated that he did not want to die.

Based on this conversation, it was recommended that psychiatry personnel assess this patient for decision-making capacity and depression in an attempt to determine if his mental state was impairing his functional capacity to make medical decisions. It was also recommended that in an attempt to preserve his life, the esophagogastroduodenoscopy should be performed without delay (overriding his refusal), including sedation as needed to ensure that the procedure was not stressful for the patient. In the meantime, the patient’s brother discussed matters with the patient and the patient changed his mind and consented to the esophagogastroduodenoscopy, as well as an additional esophagogastroduodenoscopy and coil embolization procedure that corrected the GI bleeding. Prior to the procedures being performed, psychiatry personnel assessed the patient and deemed him to have the functional capacity to make his own medical decisions, including decisions to refuse clinically indicated therapies and interventions.

Case 2
A 72-year-old woman with COPD (routinely requiring home oxygen therapy) was transferred to the general floor ward from the MICU after refusing placement of a bilevel positive airway pressure facemask for respiratory support. She also refused intubation. The MICU team believed that she was severely ill and her prognosis was very poor. At the time of her treatment refusals, her PCO₂ levels were consistently in to the upper 70s to low 80s (normal range, 34 to 46 mm Hg). The ward attending physician was uncomfortable at allowing the patient to refuse respiratory support (specifically bilevel pressure ventilation), which might reverse her declining respiratory status, and thus requested a bioethics consultation.

Communication with the patient was impossible, as she was unable to follow commands and was extremely lethargic. She could not make eye contact, mumbled unintelligibly, and pushed away the mask when attempts were made to place it on her face. Chart documentation regarding the patient’s initial refusal of facemask and intubation 5 days prior did not indicate a reason for the patient’s refusal. Questioning of the MICU resident who was involved in this refusal discussion led to the conclusion that he did not ask the patient her reason for the refusal because she was very adamant in her refusal.

Being unable to communicate with the patient at this stage, the fact that there was the potential that the patient’s decision-making capacity was impaired (due to hypercapnia) at the time of her initial refusal 5 days prior, and the fact that the patient offered no reason for her refusal and the resident did not inquire about any, contact was made with the patient’s son (with whom she lived) for a discussion about the patient’s health-care values. He indicated that he had been actively involved in his mother’s health care (eg, taking her to medical appointments) and found it odd that his mother would refuse respiratory support, although he did comment that his mother would occasionally be resistant to medical therapy if she thought her medical insurance would not pay the entire cost. He indicated that he did not believe that his mother wanted to die, even though she was severely ill with a chronic medical condition. The patient was emergently intubated for respiratory support (with the son’s consent) and later extubated and discharged to a skilled nursing facility for rehabilitation. She resumed low-dose (3 L/min) outpatient oxygen therapy for respiratory support.

	Discussion

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Both cases present the perception that the adamancy of a patient’s refusal (in the presence of no expressed reason for refusal) requires honoring the refusal, even if the proposed intervention is low risk and offers much potential benefit. This argument fails to acknowledge that the reason(s) for a patient’s refusal of medical therapy can be directly related to the patient’s decision-making capacity. Reasons can indeed be a direct expression of the patient’s values, goals, and fears,³ as well as reasons can be pertinent to the patient’s state of mind at the time of refusal.

For example, if a patient is offered eyeglasses and refuses them, and he/she states that refusal is because when worn, scary monsters appear (as opposed to not giving a reason at all), the reason provides information that the individual is (1) afraid of the therapy, and (2) has visual hallucinations with the therapy. Reflecting on these two pieces of information, as opposed to having nothing to reflect on (no reason) except for the fact that the refusals are adamant, sheds light on what the patient is feeling as well as his/her state of mind (and thus their functional ability to make decisions). It is better to hear an "irrational" reason than no reason at all, for the silence of no reason is merely a door behind which there are present, but unexplored reasons.

Consider the case of Joann Starr, a nun who was admitted to a California burn unit for treatment of smoke inhalation and "35% deep burn injury."⁴ Unable to clear the patient’s infected lung secretions by suctioning, or either turning the patient from side to side or face down, it was suggested to the patient that the head of her bed be lowered so as to elevate her lungs for drainage. She adamantly refused on repeated occasions but did not give a reason for the refusal. She did permit the intervention for a time, in the presence of her superior who visited her from the convent; however, when her superior left the hospital, she resumed refusal of the intervention. Her only comment was that she became very scared when placed in the tilted position; however, she gave no reasons behind her fear. Even a consultation with a psychiatrist failed to yield a reason for the fear.

According to the patient’s physician, he was not confident that the patient had decision-making capacity based on the presence of high fever (rising to 41°C), and inability to state a reason for the fear. After discussions with his colleagues, he instituted the bed-tilt intervention against the patient’s wishes. The patient was angry and powerless to fight the intervention, and while she harbors no unforgiveness toward the physician, she still believes that she would have rather died than be subjected to the bed tilt. She believes that because she understood the nature of the intervention and how it related to her need for removal of lung fluid, and she also understood the consequences of refusal, this rendered her capable to make her own medical decisions. If she had to re-live the same scenario, she indicates she would still make the same decision (treatment refusal) and would want that decision to be respected by the medical team.⁴ Years later, the patient did discover the reason for her fear of the table tilt. It was related to the table tilt position she was in when she suffered a heart attack and underwent an emergency tracheostomy (without anesthesia) in a local hospital where she was taken immediately after her burn accident.

Decision-making capacity assessment is not standardized among clinical professionals. Specifically, the format and content of the assessment varies, as does the person designated to perform the assessment. At some facilities, psychiatrists conduct such assessments; at other facilities, the assessments are conducted by psychologists, general physicians, bioethicists, or a combination of personnel. While there may not be one "perfect" model for decision-making capacity assessment, there are four elements⁵ that are essential to the assessment process: (1) Does the patient understand information about the proposed intervention? (2) Does the patient appreciate how that information applies to his/her clinical situation? (3) Can the patient reason with the information? and (4) Can the patient make a choice and express it? Additionally, it has been suggested that two additional items⁶ be included as part of decision-making capacity assessment; namely, asking the patient, "Over the past 2 weeks, have you felt down, depressed, or hopeless?" and "Over the past 2 weeks, have you felt little interest or pleasure in doing things?" Information generated from these two questions could prove helpful in deciding if the patient’s mood or the presence of anhedonia could be impacting their functional capacity to make decisions, and would also be helpful in determining if a psychiatry consultation is warranted.

Two of the above-mentioned assessment items (can the patient reason with the information? and can the patient make a choice and express it?) are directly related to the reasons component of accepting/rejecting a proposed therapy. This is because there will be reasons for choosing to accept or reject a therapy, and these reasons need to be explored by clinicians for their relationship to the patient’s level of understanding, as well as his/her health-care values. Expressing choice without a reason for the choice should be seen as only a partial answer. Thus said, clinicians should be aggressive (but professional) in engaging patients in conversation about their health-care values and preferences in attempt to prevent patients from hiding behind their silence (refusing to give a reason).⁷ Patients should be informed that hiding behind their silence could result in their wishes being overridden due to the dilemma that the hiding creates.

Overriding enigmatic refusals may be ethically permissible.⁷⁸ Such may be the case when clinicians are faced with declined therapies that are low risk yet offer much benefit, especially when the consequences of refusing such therapies are severe and irreversible. Can patients with decision-making capacity offer enigmatic refusals? It is possible that some of these patients do indeed have decision-making capacity, but its assessment is confounded by the patient’s silence. Without knowing the reasons for the refusal, decision-making capacity cannot be adequately assessed, and under such conditions, the cautious approach is to err on the side of preserving life by overriding the refusal. It is possible that on informing such patients that their wishes have the potential to be overridden, they may break their silence and disclose their reasons for refusing therapy.

There have been no studies exploring the reasons why enigmatic refusals occur; however, one could speculate that patients choose to remain silent due to a variety of concerns. Patients might feel their reasons are too personal to share with others, and they might worry about being embarrassed by disclosing them. In situations when patients know that their reasons for treatment refusal are irrational, they might worry that these reasons would not be accepted as valid and believe that not disclosing the irrational reasons will allow their choice to be honored at face value (lacking any expressed reason). Another possibility is that the patient feels hopeless: either hopeless about the clinical prognosis (with/without the intervention), or hopeless in the sense that the medical team will do whatever it wants anyway (without regard to patient preferences).

When presented with a case of enigmatic refusal, it is important to document all steps taken in responding to the dilemma. This includes interviews with the patient and his/her family, as well as consultations performed by mental health professionals and ethicists. A thorough chart review should also occur in an effort to determine if the patient has a documented mental health issue, physical findings that may indicate impaired cognition (eg, hypercapnia, high fever), or if there have been prior incidents of refusal of therapy and how such incidents were handled. If the matter is potentially related to a poor doctor-patient relationship, attempts should be made at establishing a relationship with a new health-care provider. Review of the patient’s advance care planning documents (eg, living will, advance directive) might also potentially provide information about the patient’s health-care values that could be useful in patient and family discussions; however, not all patients have such documents and many decline a clinician’s suggestion to draft them.

Interestingly, some facilities require that patients sign an "informed refusal" form that denotes the name of the proposed therapy, any possible alternative therapies, risks of the proposed therapy, and the risks of not having the proposed therapy. This is followed by a statement (signed by the patient and a witness) that he/she has discussed matters with the physician, has been given the opportunity to ask questions, and refuses to accept the proposed therapy. Allowing a patient to sign such a document in the setting of an enigmatic refusal, however, could be seen as creating a dilemma of consenting in the possible absence of decision-making capacity.

	Conclusion

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Handling enigmatic refusals can be time-consuming, complex, and frustrating. While it would be much quicker and easier to accept enigmatic refusals at face value (and simply honor the patient’s request), this clearly would not be ethically appropriate in the case of refusing life-saving therapy. In attempting to balance patient autonomy with clinical beneficence, one must be careful not to apply paternalism too quickly, broadly, or rigidly. Faced with being unable to understand a patient’s reasons for refusing life-saving therapy, it is ethically appropriate to be paternalistic, erring on the side of preserving life and thus not honoring the enigmatic request. This said, "erring on the side of preserving life" does not trump the futility of the situation. Specifically, there is no clinical or ethical obligation to provide futile care (by force or otherwise).⁹ In fact, to administer futile therapy is an act of poor resource stewardship, and may add to the level of suffering of the patient while offering no clinical benefit. The benefits and burdens of the therapy must be reflected on in light of the diagnosis, prognosis, and best interests of the patient who offers an enigmatic refusal.

When enigmatic refusals occur in non–life-threatening situations, clinicians should use the available time to assess the patient’s decision-making capacity and pursue the reasons behind the refusal, not forcing the refused therapy on the patient until the situation becomes life-threatening. This is because the principle of erring on the side of preserving life does not apply in non–life-threatening situations, and the risk to benefit ratio of forced treatment in such situations is ethically suspect.

In situations where patients are assessed to have the functional capacity for medical decision making, their refusal of treatment should be honored, even if it conflicts with the personal values of the clinician, and even if the reasons for the refusal appear to be irrational.¹⁰ Further, it should not be assumed that depression automatically renders patients unable to make medical decisions. A psychiatric consultation may be warranted to assist the medical team in patient management.

	Acknowledgements

 
We thank Ray Klancar for assistance with the literature research process.

	Footnotes

 
Abbreviation: MICU = medical ICU

Received for publication September 12, 2003. Accepted for publication January 15, 2004.

	References

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1. Gostin, LO (1997) Deciding life and death in the courtroom: from Quinlan to Cruzan, Glucksberg, and Vacco; a brief history and analysis of constitutional protection of the ‘right to die’. JAMA 278,1523-1528[Abstract]
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4. Starr, J, Zawacki, BE Voices from the silent world of doctor and patient. Camb Q Healthc Ethics 1999;8,129-138[CrossRef][ISI][Medline]
5. Tunzi, M Can the patient decide? Evaluating patient capacity in practice. Am Fam Physician 2001;64,299-306[ISI][Medline]
6. United States Preventive Services Task Force. Screening for depression: recommendations and rationale. Ann Intern Med 2002;136,760-764[Abstract/Free Full Text]
7. Katz, J The silent world of doctor and patient. 1984,156-160 Free Press. New York, NY:
8. Jonsen, AR, Siegler, M, Winslade, WJ Clinical ethics 3rd ed. 1992,61-64 McGraw-Hill. New York, NY:
9. American Medical Association. Ethical opinion 2.035 futile care. 1994 American Medical Association. Chicago, IL:
10. Orr, RD, Genesen, LB Requests for "inappropriate" treatment based on religious beliefs. J Med Ethics 1997;23,142-147[Abstract]

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