Evie Marcolini, MD, FCCM, FACEP, FAAEM; Patricia C. Cagnoli, MD, FACR; Sandy Swoboda, RN, MS, FCCM; Judy E. Davidson, DNP, RN, FCCM, FAAN
My son Jacob is 23 years old, and has been living with severe Tourette syndrome since childhood. He is otherwise a highly functioning young man who enjoys sports, plays guitar, is fluent in two languages and has a strong community of friends and family support, with the additional benefit that I am not only his mother but also a physician. He is pursuing his bachelor’s degree and is interested in theater, psychology and culinary arts. Over the years, Jacob’s treatment for his Tourette syndrome, as well as for depression and suicidal ideation, has included medication, inpatient admission and electroconvulsive therapy (ECT). Although these therapies have provided him overall improvement, he still battles the manifestation of his Tourette syndrome in the form of tics, which start gradually with the feeling of anxiety and the impulse to push/pull his teeth, ultimately resulting in his inability to control this urge. Consequently, he has injured himself by pulling out all but three of his teeth. This has been an unfortunate pattern; Jacob is aware when this tic is imminent and how it progresses.
Jacob was recently hospitalized after an outpatient ECT procedure to an academic center where he routinely receives care. During this hospitalization, he felt an increase in the severity and frequency of his tics and requested that he be restrained to avoid self-injurious behavior. My presence, attempts at redirecting his thoughts, and other distraction efforts were unsuccessful in suppressing his increasingly severe urges. As his mother and a physician, I was well aware of his situation and agreed with his request. In this setting, the nursing staff were very uncomfortable restraining someone who was coherent enough to actually request it as there is a strong culture of “no restraints” in this hospital in favor of other “more humane” methods such as redirection, individual sitters, hand-holding, and medications.
The physician team requested an ethics consult; the consult team met with the physician team (attending and residents) and the nursing team (nurse manager and staff nurses), as well as Jacob and me. While acknowledging the importance of limiting the use of restraints, the physician team recognized that Jacob’s case was unique and severe. They were in favor of his request to be restrained during the peak time of his tics, knowing that he had tried all other methods of diversion, including duct-taping his hands to the bed, which was ineffective to the point of his eventual self-harm. After the nurses agreed and the restraints were in place, they constantly told Jacob that they needed to take him off the restraints at a certain time, even though he knew he was not ready to have them removed. This only aggravated his anxiety and tics.
The ethical questions at hand were:
• Is it ethical to restrain a decisionally capable patient who is voluntarily requesting it?
• Were there other options to try before resorting to restraints?
• Should normal limitations on the use of restraints be individualized to honor my son’s request?
The nursing team cited policy, stating that a patient must be showing evidence of starting to hurt him-/ herself before they could rightfully restrain the patient, and further, that restraints needed to be time limited and reassessed frequently.
As his mother, I corroborate Jacob’s need to be restrained at times. He is an intelligent young man who understands his disease and knows when restraint is necessary. In my mind, Jacob has never been inappropriately restrained. In my opinion as a physician, even though there is merit to protocols and standards in medicine, we should be able to treat each patient individually and determine treatment and care plans according to the patient’s needs, using common sense. One alternative posed was to sedate Jacob. He did not want this and refused the option in favor of restraint.
The nursing staff tried other means of diversion, such as mitts, a one-to-one sitter and holding his hands. Jacob’s coping mechanisms at home include talking to his friends on the phone, exercising and playing guitar. Nursing goals are to involve his coping strategies as much as possible, but there were strict rules about having cell phones, mostly based on patient privacy considerations.
The American Nurses Association Code of Ethics with Interpretative Statements, which sets the standard for nursing ethics, states that nurses have a duty to serve patients without judgment, honor the right to selfdetermination except where the intent is to deliberately cause death, object to practicing against their own moral code, and report circumstances that may cause moral distress (distress caused by being prevented from doing what someone thinks is right).1 Further, the Code dictates that leaders have an obligation to put into place processes with which to identify and work through situations that may cause moral distress among healthcare workers.1
Therefore, nurses have duties to the patients they care for, duties to adhere to the enforced policies of the institutions where they are employed and to provide evidence-based care according to established national standards. In Jacob’s case, honoring his autonomy and right to self-determination was in direct conflict with existing standards, practice norms and the prevailing culture of minimizing restraint use. Jacob was a decisionally capable patient who requested the restraints to prevent self-mutilation and harm. The no-restraint policy of the institution, modeled after accreditation standards, encouraged staff to avoid mechanical restraints and use alternative approaches.2 The use of mechanical or physical restraints has historically been seen as barbaric, with no place in modern use.3 Incidents of patient harm and death while being restrained are reported in the news and through federal agencies such as Centers for Medicare and Medicaid Services (CMS).4–6 If instituted, mechanical restraints must have a written order, frequent assessment and time limitations imposed.2 Professional guidelines, though dated, discourage restraint use.7
In this case, the nursing staff was concerned that the use of mechanical restraints conflicted with the institution’s no-restraint policy. Several issues should be considered in evaluating this conflict: the infrequency with which patients request restraints; medical condition, the patient’s safety and decisional capacity; presence of a physician’s order for restraint; institutional and national standards for restraint use; alternative methods of preventing patient harm; nursing and other staff experience; appropriate use of chain of command; and consideration of an ethics consult.
The frequency and quality of communication between clinicians, patient and family members needs to be improved with careful attention to addressing conflicts in values associated with the situation and decisions regarding the treatment plan. A documented, clearly articulated plan based on realistic goals of care should be developed in collaboration with the patient and family. It should be available to all team members in order to provide the best patient care as well as mitigate intra-team conflict and potential organizational risk. Written accessibility of the plan to future shifts and rotations of clinicians provides continuity of care and helps prevent inadvertent mixed messages from being delivered to the patient and/ or family. As indicated in the Code of Ethics,1leadership interventions to prevent, assess and mitigate moral distress were indicated. Conscientious objection, the right to refuse an assignment because the treatment plan conflicts with staff values, would have been anticipated and honored.1,8 Early and repeated patient and family care conferences were indicated.9 An ethics consult was indicated when these conferences failed to resolve conflict regarding the treatment plan, as well as to help navigate the emotional response to the conflict in values.9
While the staff are obligated to adhere to a policy meant to protect patients, in this situation, Jacob was capable of making an independent and reasonably justified decision. Constraining a patient’s freedom with physical restraints is a serious undertaking whose benefits must always be weighed against potential harms. Because Jacob, perhaps better than anyone, clearly understood the potential harms and benefits of restraint and is a capable decision maker his request for help in this unusual form of treatment needed to be considered. Given the risks and benefits, honoring the principle of respect for autonomy, it was ethically permissible to allow therapeutic restraint.
It is understandable why the nurses hesitated to restrain a decisionally capable patient. Restraint use is highly regulated and considered a nurse-sensitive quality indicator (patient safety standards in which nurses have a direct influence over the outcomes). Prevalence rates of restraint use are routinely measured and reported. Restraint use is tightly controlled, not because of the organization’s image, but because of associated comorbidities (skin breakdown, atelectasis, pneumonia, physical deterioration and psychological distress), and death associated with restraint use.6 The National Database of Nursing Quality Indicators collects restraint prevalence data on intensive care unit patients, and this metric is used in part to determine the quality of nursing care in an organization.10,11 The U.S. Department of Health, CMS and The Joint Commission all closely monitor the use of restraint during each inspection for accreditation or licensing. The use of alternatives to restraint needs to be clearly documented and appropriate orders written by the physician, with frequent documented reassessment for removal of restraint, all at preordained minimal frequencies. No as-needed orders may be written.2,12 So how could the team address the patient’s request while adhering to the standards?
In this case, Jacob could use diversions at home, such as exercising, phone use and guitar, for controlling his involuntary movements. It could be suggested to first break the institution-specific rules about cell phone use, exercise and guitar use prior to moving to restraint. The team might have considered individualizing the internal policy to see whether any of these prohibited activities would meet Jacob’s needs. The potential harm would likely be lower than the known harm incurred from uncontrolled triggers.
In cases such as this we suggest an individualized treatment plan for the patient taking into account the option that a request for voluntary restraint be honored after all alternatives acceptable to the patient have been attempted. A daily physician assessment and order would still be necessary. This approach would also demonstrate respect for patient self-determination and would induce less stress than insisting on a trial of restraint-free periods.
In conclusion, we appreciate and affirm the goal of avoiding the use of restraint whenever possible; in cases such as Jacob’s, the judicious use of restraint could prove to be more therapeutic than harmful.
1. American Nurses Association. Code of Ethics For Nurses with Interpretive Statements. Silver Spring, MD: American Nurses Association; 2015:76.
2. Ogrinc GS: Comprehensive Accreditation Manual: CAMH for Hospitals: The Official Handbook. Oak Brook, IL: Joint Commission Resources; 2011.
3. Rosen H, DiGiacomo JN. The role of physical restraint in the treatment of psychiatric illness. J Clin Psychiatry. 1978 Mar;39(3):228-232.
4. [No authors listed]. Preventing restraint deaths. Sentinel Event Alert. 1998 Nov 18;(8):1-3.
5. Rose L, Dale C, Smith OM, et al. A mixed-methods systematic review protocol to examine the use of physical restraint with critically ill adults and strategies for minimizing their use. Syst Rev. 2016 Nov 21;5(1):194.
6. Rose L, Burry L, Mallick R, et al. Prevalence, risk factors, and outcomes associated with physical restraint use in mechanically ventilated adults. J Crit Care. 2016 Feb;31(1):31-35.
7. Maccioli GA, Dorman T, Brown BR, et al; American College of Critical Care Medicine; Society of Critical Care Medicine. Clinical practice guidelines for the maintenance of patient physical safety in the intensive care unit: use of restraining therapies—American College of Critical Care Medicine Task Force 2001-2002. Crit Care Med. 2003 Nov;31(11):2665-2676.
8. Davidson JE: Moral Distress. In: Thompson DR, Kaufman, eds. Critical Care Ethics: A Practice Guide. 3rd ed. Mount Prospect, IL: Society of Critical Care Medicine; 2014: 233-240.
9. Davidson JE, Aslakson RA, Long AC, et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med. 2017 Jan;45(1):103-128.
10. Maag SA, McHugh R, Cook M, Mulkey MA. ICU Restraint Reduction: Development of Evidence Based Tools to Guide Interventions. [ANA abstract 6481]. Presented at: 6th Annual Nursing Quality Conference; Jan 25-27, 2012; Las Vegas, NV.
11. Montalvo I. The National Database of Nursing Quality Indicators (NDNQI). Online J Issues Nurs. Silver Spring, MD: American Nurses Association; 2016.
12. Centers for Medicare and Medicaid Services. Regulations and Guidance. Washington, DC: Centers for Medicare and Medicaid Services. https://www.cms.gov/Regulations-and-Guidance/Regulations-and-Guidance.html. Accessed March 27, 2017.