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Ethical, Legal, and Medical Challenges When a Patient Refuses a Transfer From Rehabilitation to Acute Medical Services
PM R 8 (2016) 690-697
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Ethical Legal Feature
Ethical, Legal, and Medical Challenges When a Patient Refuses a Transfer From Rehabilitation to Acute Medical Services Contributors: Nadia N. Sawicki, JD, M.Bioethics, Jay M. Brenner, MD, FACEP, Allison Kessler, MD Guest Editor: Preya S. Tarsney, JD Feature Editor: Debjani Mukherjee, PhD Feature Editor Introduction I have asked Preya S. Tarsney, JD, to guest edit this Ethical/Legal column on a specific type of informed refusal in the rehabilitation context. Ms Tarsney started her legal career in litigation and health law, and then specialized in clinical medical ethics, completing a postdoctoral fellowship at the University of Chicago’s MacLean Center for Clinical Medical Ethics. She is
currently a Bioethicist in the Donnelley Ethics Program of the Rehabilitation Institute of Chicago, a Lecturer in physical medicine and rehabilitation (PM&R) at Northwestern University Feinberg School of Medicine, and a Faculty Lecturer at the University of Chicago. Her scholarly interests include informed refusals, negotiation and mediation in clinical rehabilitation, and ethics consultation. As always, I welcome comments and ideas for the Ethical/Legal column at [email protected].
Guest Editor: Preya S. Tarsney, JD In my experience, as a result of advertising and enhanced access to medical data, patients today have become more informed of potential treatment options and have increasingly requested such treatments. Likewise, a review of ethics consultations at our Rehabilitation hospital reveals that the number of patients who refuse recommended treatment has grown, and there is more general discussion of informed refusals in medical ethics. As someone who often provides counsel on informed refusals, I was starting to see some interesting, atypical descriptions of refusals that were brought to our ethics service. I realized that what made some of these refusals “atypical” is that they were followed by requests for treatment that were unexpected and concerning to clinicians. One article that highlights this issue is aptly named “Clinician Integrity and Limits to Patient Autonomy.” In this article, Lantos et al [1] explore the conflict that can exist when physicians believe that their professional integritydthat is, the interests and obligations they have in their medical professional roledis tested by patients’ requests for unusual treatment. Specifically, the authors look at the case of a 28-year-old who was hospitalized and refused transfer from the medical floor
to the intensive care unit (ICU) to attend to his very complex medical condition. He desired instead to receive treatment on the medical floor that he had come to view as “his home away from home.” As the case unfolded, it became clear that the patient had been managing an inherited disorder for a long time and had been dealing with infections since childhood. He had a difficult prior experience in the ICU and clearly preferred the medical care offered by nurses and clinicians he trusted on the medical floor. During the course of his most recent hospitalization, the patient refused some invasive treatments, but not all of them, because he requested to be full code despite his “deteriorating respiratory status.” He was amenable to transfer to the ICU only in the context of a full arrest. The clinicians on the medical floor in this case were uncomfortable with providing what seemed to be “less than optimal care to a critically ill patient” even if he was willing to accept “increased risks.” These clinicians called for an ethics consultation, and in the article the authors examine the difficult question of “[w]hen should clinicians agree to patient requests that involve the clinicians in providing less than optimal care”? [1].
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To bring this dilemma back to the world of PM&R, I provided our contributors with the article and the following prompt: Many rehabilitation hospitals and programs are serving patients with higher health-related acuity levels and managing their patients’ increasingly complex medical conditions. Recently, while discussing with residents at our rehabilitation hospital what makes a patient’s refusal of medical treatment “informed,” an interesting dilemma was raised: What happens when the patient, who has decisional capacity and is an active participant in his/her care plan, has a medical condition that deteriorates such that the medical team now believes the patient needs to be transferred to an acute care setting for further care but the patient “refuses” the transfer? Do guiding laws, models, theories, or frameworks exist that clinicians can call upon to enable them to fulfill their professional role appropriately in the face of this “refusal”? When, if ever, can these refusals be considered “informed,” meaning that the patient is fully aware of the consequences of his/her request and actions? Does a conflict exist between a clinician’s professional integrity and respect for patient autonomy? I invited 3 professionals to contribute to this column, which focuses on patient refusals of transfer from PM&R to the acute care setting and the struggle to continue to treat or fulfill the subsequent patient requests. In the first essay, Nadia N. Sawicki, JD, Professor of Law at Beazley Institute for Health Law and Policy, Loyola
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University Chicago School of Law, who also has an M.Bioethics degree, addresses and analyzes the concern about liability and ethical concerns that can surface for clinicians when patients refuse transfer and remain in the rehabilitation setting. In the second essay, Jay M. Brenner, MD, FACEP, Medical Director of the Community Campus Emergency Department, Associate Professor of Emergency Medicine, and Associate Professor of Bioethics and Humanities at State University of New York (SUNY)eUpstate Medical University, tackles the clinical and ethical question of when a patient should be transferred from one setting to another and what factors should be considered in making this difficult decision. Finally, Allison Kessler, MD, a PM&R Resident Physician at Rehabilitation Institute of Chicago in her third year and a colleague on our hospital ethics committee, examines in detail 2 cases in which she was confronted with the decision of whether, and when, to transfer her patient from rehabilitation to acute care. Dr Kessler discusses the similarities and differences between these cases and shares practice points she has developed based on these experiences. After the commentaries, I will provide some concluding remarks about the legal and ethical aspects of this particular type of (informed) refusal. Reference 1. Lantos J, Matlock AM, Wendler D. Clinician integrity and limits to patient autonomy. JAMA 2011;305:495-499.
Informed Refusal in the Rehabilitation Context: Legal Considerations Nadia N. Sawicki, JD, M.Bioethics Beazley Institute for Health Law and Policy, Loyola University Chicago School of Law One of the reasons why rehabilitation physicians may be uncomfortable treating a patient who refuses preemptive transfer to an acute care setting is fear of liability. Although continuing to provide care in a rehabilitation setting respects the patient’s autonomous wishes, the facility may not be optimally equipped to monitor and respond to the patient’s urgent medical needs. Thus, just as providers may believe they are caught in an ethical double-bind between their responsibilities to promote autonomy and practice beneficence/nonmaleficence, they likewise may be concerned about a tension between their legal duty to respect a patient’s right to informed refusal and their legal duty to provide competent medical care. Although the decision about how to proceed in such cases is a difficult one, fear of liability should not be a driving motivator, because the law in such cases is in alignment with providers’ ethical responsibilities. Malpractice law in the United States defers to a
provider’s exercise of reasonable medical judgment, and thus compliance with the norms of clinical practice and medical ethics not only makes good professional sense but also good legal sense. When a competent patient whose medical condition is deteriorating has been fully informed of the risk of continuing care in a traditional rehabilitation setting but still refuses pre-emptive transfer to an acute care setting, the ethical principle of autonomy directs providers to respect the patient’s wishes. The norms of ethical medical practice reject the idea of involuntary treatment of competent and informed patients and prioritize the maintenance of trust-based relationships between patients and providers. Legal norms in this context are no different: Patients have a legal right to medical self-determination that includes the right to refuse even life-saving care. Providing treatment (or, in this case, transferring the patient to a different care setting) against a competent patient’s informed refusal puts providers at risk for a lawsuit on the grounds of battery or negligence. The ethical concerns on the other side, of course, are the principles of beneficence and nonmaleficence,
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which require providers to act in the patient’s best interests and avoid causing harm. Continuing traditional rehabilitation care when a patient’s medical needs demand more aggressive monitoring or medical intervention may lead to further deterioration of the patient’s condition, in which case providers may feel complicit in the causation of harm. But better understanding of medical malpractice lawdwhich also penalizes providers when their conduct results in patient injurydcan help explain why the decision to continue treatment in the rehabilitation setting in the manner the patient requests may be the better choice, from both a legal and an ethical perspective. If managed properly, the continued provision of competent rehabilitation care to a patient who refuses preemptive transfer to an acute care setting poses limited legal risk. Although the legal nuances are complex, 3 basic principles of tort lawdinformed consent and refusal, assumption of risk, and standard of cared support this conclusion. The corollary of the physician’s legal duty to obtain a patient’s informed consent before providing treatment is the competent and informed patient’s legal right to refuse unwanted treatment. If a physician has assessed the patient’s capacity, fully informed the patient of the risks and benefits of treatment and refusal, and adequately documented this conversation in the record, the physician will not be liable if the patient suffers harm arising from the manifestation of one of these underlying risks. Thus, when a patient has been informed that her or his medical needs exceed the types of care the providers in the rehabilitation facility are capable of providing, and that continuing care in the rehabilitation setting (as opposed to an acute care setting) may result in the progressive deterioration of the patient’s condition, the facility and its providers will not be liable if the patient’s condition continues to decline despite their best efforts to provide competent care within their own scope of practice. The patient’s right to informed refusal can be understood as an application of the legal doctrine of primary assumption of risk. This doctrine stipulates that when a person knowingly appreciates and accepts the risks of an inherently dangerous activity (that is, one where the risks are not caused by a third party’s negligence), that person cannot sue if she or he is injured. In the medical context, the doctrine of primary assumption of risk dictates that if an informed patient with acute care needs voluntarily chooses to accept the risks of treatment at a lower level of care, the provider who competently provides such caredcompetency being defined by reference to providers with the same discipline or specialtydwill not be held liable. For this reason, courts have sided with providers in many cases in which patients have suffered harm as a result of refusing recommended care plans or choosing to pursue unconventional treatment options. For example, if a
physician provides a patient with a referral to a specialist and informs the patient that the specialist can better serve that patient’s medical needs, the patient who fails to follow up with the specialist and suffers harm as a result cannot sue [1]. If a patient who is a Jehovah’s Witness chooses to undergo a surgical procedure that poses a risk of blood loss but refuses to consent to a blood transfusion, that patient will be deemed to have assumed the risk of harm resulting from loss of blood despite the surgeon’s competent performance of the procedure [2]. Likewise, patients who choose to pursue experimental treatments [3] or reject treatment entirely [4] after being fully informed of the risks may be barred by the doctrine of assumption of risk from suing their health care providers if those risks arise. According to one court, refusing to protect physicians from liability when they competently treat patients who refuse conventional treatment (whether because of religious beliefs or other personal preferences) would be “repugnant in a society which attempts to make medical care available to all its members” [5]. It is only if a health care provider is negligent in the provision of care by failing to satisfy the standard of care of a reasonably competent practitioner within the same discipline or specialty that the provider will face liability. In such cases, even if the provider has fully informed the patient of the risks of treatment and the patient has expressly waived liability, a negligent provider generally cannot use the patient’s consent as a defense [6]. In determining whether a provider has violated the standard of care and therefore might be subject to liability for malpractice, courts look to the degree of care that a reasonably competent practitioner of that type would exercise under similar circumstances. For example, a physical therapist is only expected to provide the services that licensed physical therapists are permitted to provide, not the services expected of an orthopedist. Likewise, a patient who requires ICU-level monitoring cannot fault a rehabilitation facility for failing to provide such monitoring when that monitoring is not standard among similar facilities. Given these precedential doctrines, rehabilitation providers and facilities seem to face limited risk of liability when they continue to provide high-quality care available in their setting and within their scope of competency at the request of a competent patient who has made an informed refusal of preemptive admission to an acute care facility. In such contexts, going along with the patient’s choice of care plan is likely to be the best way to satisfy the legal and ethical responsibilities to provide quality medical care while respecting a patient’s autonomous wishes. References 1. Adkins v. Sanders, 871 S.2d 732 (Miss. 2004). 2. Shorter v. Drury, 695 P.2d 116 (Wash. 1985).
N.N. Sawicki et al. / PM R 8 (2016) 690-697 3. Boyle v. Revici, 961 F.2d 1060 (2nd Cir. 1992). 4. Lyons v. Walker Regional Medical Center, 868 So.2d 1071 (Ala. 2003).
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5. Shorter v. Drury, 695 P.2d 116, 121 (Wash. 1985). 6. Tunkl v. Regents of the University of California, 383 P.2d 441 (Cal. 1963).
Physicians Should Consider Persuasion and Proportionality in Patient Decisions Jay M. Brenner, MD, FACEP Upstate Medical University, State University of New York An adult patient with decision-making capacity has the ethical and legal right to make an informed decision about whether to refuse transfer from a rehabilitation hospital to an acute care setting for further care. A physician can determine decision-making capacity by assessing the patient’s ability to understand the diagnosis and proposed management, appreciate the risks and benefits, and show reasonable comprehension. The rehabilitation hospital is “required to still treat the patient within the scope allowed by the patient until the patient is stabilized” [1]. There may be limits to the professional obligation to honor this refusal based on the duty to provide appropriate care or the physician’s integrity. The Emergency Medical Treatment and Active Labor Act (EMTALA) requires clinicians to transfer patients exceeding their capabilities to an appropriate hospital. Bitterman [1] notes, “If a patient refuses to consent to a medically indicated transfer, the hospital will not be liable under EMTALA.” However, the Centers for Medicare and Medicaid Services (CMS) implies that a hospital, including a rehabilitation hospital, is only subject to EMTALA if it has a dedicated emergency department [2]. Beyond the legal parameters of EMTALA, physicians within and outside of PM&R have struggled with the clinical and ethical question of when a patient should be transferred from one setting to another over their objection. In the case presented by Lantos et al [3], referenced in the Introduction, a patient refused transfer from a medical ward to the ICU for worsening respiratory function. The patient had a previous prolonged ICU admission, and as a result he was resistant to returning there. He “did not feel comfortable with the ICU staff ” [3]. Here the primary team proposed transfer to the ICU, but they did it in a soft, passive manner as they “began discussions with the patient regarding possible transfer back to the ICU.” I believe they failed to persuade the patient because they did not adequately explore the nature of the patient’s avoidance. Similarly, in our rehabilitation hospital case, stronger efforts to explore the refusal of transfer to acute care and efforts to persuade (but not coerce) might resolve the dilemma. For instance, in the emergency department setting, a 35-year-old man with a history of coronary artery
disease presented with a chief complaint of chest pain. After interpreting a normal electrocardiogram, I ordered a troponin test and a chest radiograph. A nurse called me to the room again because the patient requested to leave. I found him to be agitated, but not in any discomfort. His wife tipped her thumb to her lips with her pinky in the air to signal to me that he had been drinking alcohol prior to arrival. He was acting clinically sober. When I asked why he wanted to leave before completing his evaluation, he said that he was quite anxious because his aunt had died of a myocardial infarction in this very room. The sound of the telemetry monitor was reminding him of her death, and he asked if I could shut it off. He was no longer experiencing chest pain, and therefore I agreed to discontinue telemetry monitoring. He agreed to stay for his troponin test and chest radiograph. Even though he left without being discharged, results of both his troponin test and chest radiograph were normal. Persuasion was effective in the negotiation. Lantos et al [3] goes further than this by stating: (1) patients may choose among the options within the proffered range, but they cannot go beyond it; and (2) the patient’s right to forgo treatment is stronger than the right to receive a particular treatment. In their case, the medical team has made staying on the medical floor an option by broaching transfer to the ICU as only a possibility rather than a necessity. Furthermore, the patient is empowered to refuse transfer because of the stronger right to forgo treatment. Of course, the patient is not truly forgoing treatment, but rather is refusing transfer. This refusal is an imposition on the medical team, who then must provide a level of treatment ill suited for the environment of the medical floor. Lantos et al [3] said that “efficiency, fairness, and costeffectiveness are good reasons to place limits on the extent to which clinicians accept patient requests.” From my perspective, patient safety and risk management considerations should also limit the options presented to the patient in the Lantos case. Patient safety is the patient-focused version of the physician-focused concept of risk management in that avoiding preventable medical errors is the best way to prevent malpractice suits. This patient ended up dying of respiratory arrest on the medical floor, an outcome that could have been prevented had staying on the floor never been a medical option. Nelson et al [4] presented another case in which a patient with decision-making capacity presented to the emergency department with a known pulmonary
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embolism as a result of subtherapeutic anticoagulation but refused to take the recommended anticoagulants. She ended up dying. The follow-up discussion by Nelson et al [4] brought up the importance of proportionality initially presented by Hermere ´n [5]. Proportionality should show “how far a physician should go to intervene over the statements of a patient who has refused necessary care in a manner showing lack of insight.” Nelson et al [4] give an example that a patient who refuses a laceration repair should be countered with persuasion (my emphasis), discussion of alternative means of wound care, and documentation of these attempts. Hermere ´n [5] further elucidated that to determine the relative proportionality, one must imply 3 conditions: (1) the importance of the objective; (2) the relevance of means; and (3) the most favorable option. He argued that a fourth condition of nonexcessiveness exists, along with a fifth condition of choosing the least harmful alternative. In the absence of an obvious legal mandate under EMTALA to transfer a patient who exceeds the rehabilitation hospital’s capabilities, a clinician must consider the proportional response in an ethical framework. How dangerous and risky is the patient’s decision to refuse transfer? How certain is the clinician’s assessment of the patient’s decision-making capacity? How much effort has the clinician put forth to try to accommodate the patient’s request or to persuade the patient’s decision? Why does the patient feel so strongly about refusing transfer? Are these reasons reasonable? What would the clinician do if this were himself/herself or a loved one? Is there time to enlist the patient’s loved ones to try to facilitate the discussion? All of these questions may help the clinician either come to terms with the patient’s request
and see it as reasonable or empower the clinician to deny the request and transfer the patient in spite of the patient’s preference. Ultimately, Wendler [6] sums it up best in his article, “Are Physicians Obligated Always to Act in the Patient’s Best Interests?” Professional integrity is one of the 27 reasons why physicians are not obligated to act in the patient’s best interests, including situations in which one believes that honoring a patient’s request is either futile or harmful [6]. “I cannot do that” is a reasonable response as long as every attempt to persuade the patient to accept the proposed plan has been made and every attempt to accommodate the patient’s request safely has been made. Of course, the physician ought to appreciate, comprehend, and understand the benefits and risks of such a bold decision as though he were the patient himself. The physician also must be careful not to impose his or her value system upon the patient. References 1. Bitterman RA. Providing emergency care under federal law. Dallas, TX: American College of Emergency Physicians; 2000. 2. Centers for Medicare and Medicaid Services. Certification and compliance for the Emergency Medical Treatment and Labor Act (EMTALA). Available at https://www.cms.gov/Medicare/ProviderEnrollment-and-Certification/CertificationandComplianc/Downloads/ EMTALA.pdf. Accessed June 10, 2016. 3. Lantos J, Matlock AM, Wendler D. Clinician integrity and limits to patient autonomy. JAMA 2011;305:495-499. 4. Nelson J, Venkat A, Davenport M. Responding to the refusal of care in the emergency department. Narrat Inq Bioeth 2014;4:75-80. 5. Hermere ´n G. The principle of proportionality: Interpretations and applications. Med Health Care Philos 2012;15:373-382. 6. Wendler D. Are physicians obligated always to act in the patient’s best interests? J Med Ethics 2010;36:66-70.
Ethical Challenges Surrounding Transfer Out of a Rehabilitation Hospital: Reconciling Short- and Long-Term Goals Allison Kessler, MD Northwestern University Feinberg School, Rehabilitation Institute of Chicago It is a physician’s responsibility to offer the best possible care to patients. However, the principle of respect for autonomy dictates that patients ultimately have the right to make decisions that affect their own lives. Thus, challenging ethical dilemmas may arise when a conflict exists between what a physician recommends and what a patient decides. It is particularly troublesome for physicians when a patient’s decision is perceived to be potentially life threatening or when a physician is asked to provide care she or he does not agree with. As a resident physician in a rehabilitation hospital, I have been confronted with some difficult and ethically challenging issues when patients refuse
emergent transfer to another health care facility. I will discuss 2 patient scenarios to illustrate the types of ethical dilemmas I have faced and how similar decisions by different patients may raise distinctly different ethical issues. As physiatrists, some of us treat patients in freestanding rehabilitation hospitals where not all medical interventions can be performed safely as a result of the unavailability of certain medical supplies or medications, lack of specialized training of staff, a low staff to patient ratio, and, in some circumstances, insufficient physician training and experience with specific medical interventions. However, it is not surprising that many patients are unaware of some of these limitations, because in the patient’s mind, “You are a doctor, this is a hospital, so of course I can receive whatever medical care I need here!”
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I recently cared for an elderly man, who, for the purposes of this article, I will call Harold. Harold was undergoing acute inpatient rehabilitation after a cervical spinal cord injury. Both he and his family had made it clear that they would want “everything to be done” in the event of a medical emergency. His age, comorbidities, and already impaired respiratory function made any additional illness worrisome and potentially life threatening. I was called to see Harold because he had a fever. Although I quickly identified the underlying issue as a urinary tract infection and initiated treatment, he did not improve and his vital signs began to worsen. At this point I believed it was no longer safe for him to be at our rehabilitation hospital, and I decided to transfer him to an acute care hospital for more intensive care. The decision to transfer a patient to an acute care facility is not always straightforward and comes with significant disadvantages. Treatment is interrupted, rehabilitation days are lost, function may decline, and economic costs are significant, not to mention the logistical inconvenience to the patient. It is times like these when I find practicing in a rehabilitation hospital can be the most challenging. As a clinician I identified the underlying medical issue and treated it as best I could with the limited acute care resources available to me, but I knew it would not be enough. When I informed the patient that I planned to transfer him, he adamantly refused. He did not want to interrupt his stay at the rehabilitation hospital because it had “taken so long to get here” in the first place, and he was concerned that his insurance would not let him come back. He wanted to “wait it out” to see if he would improve. This desire was particularly frustrating because he continued to request that “everything to be done,” but he wanted to control the timing of the transfer. Although he was able to articulate the risks and benefits on a superficial level, his decision not to be transferred did not align with his wishes to be treated aggressively. I had discussed all the medical reasons for the transfer, as well as my concerns that should he continue to decline, he could potentially face a life-threatening situation because of our inability to further escalate care. When he persisted in his refusal, I knew that eventually this would mandate an emergency transfer under less favorable circumstances that would likely have a much poorer outcome. I was not sure he truly understood the intricacies of a transfer and that his outcome could be seriously affected by “waiting it out.” The situation then came to a head when his blood pressure began to drop further and his mental status deteriorated. At that point, he no longer had the capacity to either accept or refuse treatment. I then believed I was justified in transferring him, because this transfer was ultimately in line with his repeated statements that he
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wanted everything to be done. Fortunately, his wife concurred. In another example, I was called to see a patient who I will name Susan. Prior to admission to the rehabilitation hospital, Susan had undergone a workup for intermittent angina. She had the appropriate medical evaluation for her chest pain and was diagnosed with multivessel stenosis. At that time, she declined surgical intervention. On the inpatient rehabilitation unit, Susan began having angina overnight while getting up to use the restroom. Any other patient would have been transferred immediately to a cardiac care unit. However, she made it clear that even if she were transferred over her objections, she would refuse the treatment offered in the acute care hospitaldsomething she had already been offered and previously declined. She agreed to a “do not resuscitate” (DNR) order, and she stated clearly that under any eventuality she did not want any more invasive interventions other than oral medications or nitroglycerine paste for comfort, which I was already prescribing. In both cases, the patients received suboptimal treatment for their medical problems and asserted their autonomy by refusing medical recommendations. However, for the clinician, the 2 cases are distinctly different. Harold’s refusal to be transferred did not reconcile with his long-term goal and stated preference to “have everything to be done.” Susan’s refusal to be transferred was in alignment with her stated long-term goals, and the DNR order formalized her wishes, permitting a clear conversation about the limits of our ability to treat her, thus satisfying both patient autonomy and physician responsibility. Although I found it personally unsatisfying to see Susan accept suboptimal medical care, I did not feel as ethically challenged as I did with Harold’s refusal, where I felt forced to provide care I believed was inappropriate when looking at his immediate medical needs and his wishes as a whole. In essence, by trying to fulfill Harold’s short-term and long-term goals, it impinged on my responsibility to offer the best care possible to him. And, ironically, Harold’s reluctance to transfer likely lost him more days in rehabilitation; thus, he was not able to fulfill what I have realized was a competing, albeit less highlighted, short-term goal for Harold: to continue with his rehabilitation care as soon as possible. When making the decision to transfer a patient out of a rehabilitation setting, I try to look at the big picture and partner with patients to try to make the decision based on their long-term wishes. However, it is not always easy for patients to think that far in the future. Therefore, I have learned to try to work with patients to discuss how certain medical decisions now will affect their rehabilitative course both in the short and long term. Harold’s case was distressing, because
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by his initial refusal for transfer I was not fulfilling his underlying wish to continue rehabilitation as soon as possible, nor was I allowed to provide him the best medical care. In Susan’s case, although it was
personally unsatisfying to provide less medical care, I could still take solace from truly fulfilling both of her short-term and long-term goals because they were in full alignment.
Guest Editor’s Comments Preya S. Tarsney, JD Northwestern University Feinberg School, Rehabilitation Institute of Chicago As a former practicing lawyer and now a bioethicist, I am keenly aware of the limits of what guidance the law can give us in these situations. Although the law is often the “floor” that sets an understanding of the bare minimum that must be provided, it is often not clear how large that floor space is or how much support it has. Indeed, the law is often clearer about what is not permissibledthat is, forcing treatment on a patient with capacitydand not as clear when it comes to what is permissible. Instead, in these cases, the specific facts of the case will drive how one applies the legal principles in question to those facts. As with applied ethics, we seek to understand the particular situation as we work to adhere to established principles. The law is also dynamic. Laws change. They are different depending on your jurisdiction, and laws may be amended or altered as new cases are confronted. In law school, we are taught the English common law method of applying preexisting case law to new factual circumstances. In this method, lawyers must demonstrate how the existing case law rules should apply to new facts, or whether those legal rules need to be further clarified or altered in light of a set of facts that has never been confronted before. Thus new legal precedent is developed organically. Given this common law process, the law is not static and, especially in the area of medical ethics, few black and white rules exist that will fit all circumstances. Thus it is safe to say that gray areas will persist for some time both in the law and ethics. In other words, sometimes we are left to think through both where the floor and the ceiling are when we are confronted with new issues that require legal and ethical analysis. The contributors raise many important points about refusals of transfers that are followed by requests for treatment. Some questions still persist, namely: How far must one go to satisfy a patient, especially when the patient’s request turns into a demand for specific treatment that rehabilitation practitioners are not comfortable providing? In looking at this question from a legal and risk perspective, it is clear that the right to refuse treatment is greater than the right to demand specific treatment. As Professor Sawicki notes, the law and ethics are aligned when it comes to the right to refuse treatment and “[p]atients have a legal right to medical self-determination that
includes the right to refuse even life-saving care.” However, there is no correlate legal right to demand treatment from practitioners. In fact, we know that practitioners cannot be required to provide care outside of their scope of practice. Thus, how these situations in which patients are demanding specific treatments will actually play out from a legal and ethical standpoint will depend greatly on the facts of the case in question. To examine this further in 2 specific situations, let’s first look at the case of a patient with capacity who has a condition that has developed into a life-threatening situation and needs immediate treatment in the ICU. Generally, 2 options are available to this patient: (1) refuse ICU treatment and likely die in the rehabilitation facility, or (2) transfer to the ICU to receive specific treatment. In this case, it is likely that the physician or clinical administrator from the institution would have to explain why treatment demanded by the patient (ie, the demand to stay in the rehabilitation unit) cannot be provided at the rehabilitation facility but that treatment (ie, transfer to the ICU) can be refused. The option that prevails in this circumstance will be driven by the specific facts of the case and, in some instances, it could be that those facts may reveal other potential options (eg, palliative care) besides the 2 options previously articulated. Contrast this scenario to other cases, which are more typical in rehabilitation, where generally more options are available. For example, in a nonelife-threatening situation, a consultant with relevant expertise (eg, a nephrologist or cardiologist) from an acute care setting could be called to provide specific treatment to the patient for a temporary issue so the patient could continue to remain in a rehabilitation setting. This solution would not work in every type of rehabilitation facility or for every type of consultant, but it is an option in many situations. Furthermore, certain facilities might be able to call on third parties, such as an ombudsperson or an ethics consultant, to offer help in negotiating with patients to see if there is room to satisfy some pieces of their requests and to set up contingency plans for how to handle other pieces. In short, when it comes to demanding certain treatment, we are back in that gray area. As such, the specific facts and culture of the institutions will factor in to a subsequent legal analysis of how the law would protect physicians and institutions or bolster the claims of patients.
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Concluding Remarks Debjani Mukherjee, PhD Northwestern University Feinberg School, Rehabilitation Institute of Chicago Informed refusals in rehabilitation are a key bioethical issue. The fact that patients with capacity have the right to refuse treatment is clearly established by the courts. However, this specific example of refusing a transfer to acute care challenges our thinking about how best to proceed. When discussing this case (and column) among the ethics team at the Rehabilitation Institute of Chicago, several aspects rose to the surface. The first issue is the fact that even a patient with capacity may not be fully informed about what they are refusing; Dr Kessler’s discussion of short-term versus long-term goals highlights one aspect of this situation. The second issue is that negotiation and discussion often may lead to resolution of the refusal; Dr Brenner mentions this possibility in his commentary. And ultimately, as Professor Sawicki points out, respecting the patient’s choice, even choices we don’t agree with, is in line with our legal and ethical responsibilities. Another aspect is also of note. Although we generally think about informed refusals as highlighting a tension between the ethical principles of respect for autonomy and beneficence or nonmaleficence, justice and
allocation of resources are also aspects to consider. For instance, in the case of refusals of emergent transfer, clinicians may need to administer additional treatment to these patients who continue to remain under their care, which could result in less time spent with other patients. The allocation of time and attention is a less discussed but important justice issue in clinical care. The patient’s refusal to transfer could also increase the clinicians’ risk of liability if they inadvertently fail to provide standard of care treatments to their other patients. Other resource trade-offs can arise as well, and to the extent that providers believe they are letting other patients down and not treating patients equitably, this situation can contribute to moral distress. Beyond this, if the patient who refused transfer cannot participate in rehabilitation services but continues to receive care in the rehabilitation setting, then there may be consequences for insurance reimbursement. These unintended consequences of a specific patient’s refusal of transfer are similar to other individual patient choices that have reverberating effects. The complexity of refusing a transfer to acute medical services, therefore, has implications for the individual patient, clinician, and potentially other patients and the institution. In the end, negotiation and compromise by both parties may be the best outcome that can be expected.
Disclosure N.N.S. Beazley Institute for Health Law and Policy, Loyola University Chicago School of Law, Chicago, IL Disclosure: nothing to disclose J.M.B. Upstate Medical University, State University of New York (SUNY), Syracuse, NY Disclosure: nothing to disclose A.K. Northwestern University Feinberg School, Donnelley Ethics Program, Physical Medicine & Rehabilitation, Medical Humanities, Rehabilitation Institute of Chicago, Chicago, IL Disclosure: nothing to disclose
P.S.T. Northwestern University Feinberg School, Donnelley Ethics Program, Physical Medicine & Rehabilitation, Medical Humanities, Rehabilitation Institute of Chicago, Chicago, IL Disclosure: nothing to disclose D.M. Northwestern University Feinberg School, Donnelley Ethics Program, Physical Medicine & Rehabilitation, Medical Humanities, Rehabilitation Institute of Chicago, Chicago, IL. Address correspondence to: D.M.; e-mail: [email protected] Disclosure: nothing to disclose
www.pmrjournal.org
Ethical Legal Feature
Ethical, Legal, and Medical Challenges When a Patient Refuses a Transfer From Rehabilitation to Acute Medical Services Contributors: Nadia N. Sawicki, JD, M.Bioethics, Jay M. Brenner, MD, FACEP, Allison Kessler, MD Guest Editor: Preya S. Tarsney, JD Feature Editor: Debjani Mukherjee, PhD Feature Editor Introduction I have asked Preya S. Tarsney, JD, to guest edit this Ethical/Legal column on a specific type of informed refusal in the rehabilitation context. Ms Tarsney started her legal career in litigation and health law, and then specialized in clinical medical ethics, completing a postdoctoral fellowship at the University of Chicago’s MacLean Center for Clinical Medical Ethics. She is
currently a Bioethicist in the Donnelley Ethics Program of the Rehabilitation Institute of Chicago, a Lecturer in physical medicine and rehabilitation (PM&R) at Northwestern University Feinberg School of Medicine, and a Faculty Lecturer at the University of Chicago. Her scholarly interests include informed refusals, negotiation and mediation in clinical rehabilitation, and ethics consultation. As always, I welcome comments and ideas for the Ethical/Legal column at [email protected].
Guest Editor: Preya S. Tarsney, JD In my experience, as a result of advertising and enhanced access to medical data, patients today have become more informed of potential treatment options and have increasingly requested such treatments. Likewise, a review of ethics consultations at our Rehabilitation hospital reveals that the number of patients who refuse recommended treatment has grown, and there is more general discussion of informed refusals in medical ethics. As someone who often provides counsel on informed refusals, I was starting to see some interesting, atypical descriptions of refusals that were brought to our ethics service. I realized that what made some of these refusals “atypical” is that they were followed by requests for treatment that were unexpected and concerning to clinicians. One article that highlights this issue is aptly named “Clinician Integrity and Limits to Patient Autonomy.” In this article, Lantos et al [1] explore the conflict that can exist when physicians believe that their professional integritydthat is, the interests and obligations they have in their medical professional roledis tested by patients’ requests for unusual treatment. Specifically, the authors look at the case of a 28-year-old who was hospitalized and refused transfer from the medical floor
to the intensive care unit (ICU) to attend to his very complex medical condition. He desired instead to receive treatment on the medical floor that he had come to view as “his home away from home.” As the case unfolded, it became clear that the patient had been managing an inherited disorder for a long time and had been dealing with infections since childhood. He had a difficult prior experience in the ICU and clearly preferred the medical care offered by nurses and clinicians he trusted on the medical floor. During the course of his most recent hospitalization, the patient refused some invasive treatments, but not all of them, because he requested to be full code despite his “deteriorating respiratory status.” He was amenable to transfer to the ICU only in the context of a full arrest. The clinicians on the medical floor in this case were uncomfortable with providing what seemed to be “less than optimal care to a critically ill patient” even if he was willing to accept “increased risks.” These clinicians called for an ethics consultation, and in the article the authors examine the difficult question of “[w]hen should clinicians agree to patient requests that involve the clinicians in providing less than optimal care”? [1].
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To bring this dilemma back to the world of PM&R, I provided our contributors with the article and the following prompt: Many rehabilitation hospitals and programs are serving patients with higher health-related acuity levels and managing their patients’ increasingly complex medical conditions. Recently, while discussing with residents at our rehabilitation hospital what makes a patient’s refusal of medical treatment “informed,” an interesting dilemma was raised: What happens when the patient, who has decisional capacity and is an active participant in his/her care plan, has a medical condition that deteriorates such that the medical team now believes the patient needs to be transferred to an acute care setting for further care but the patient “refuses” the transfer? Do guiding laws, models, theories, or frameworks exist that clinicians can call upon to enable them to fulfill their professional role appropriately in the face of this “refusal”? When, if ever, can these refusals be considered “informed,” meaning that the patient is fully aware of the consequences of his/her request and actions? Does a conflict exist between a clinician’s professional integrity and respect for patient autonomy? I invited 3 professionals to contribute to this column, which focuses on patient refusals of transfer from PM&R to the acute care setting and the struggle to continue to treat or fulfill the subsequent patient requests. In the first essay, Nadia N. Sawicki, JD, Professor of Law at Beazley Institute for Health Law and Policy, Loyola
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University Chicago School of Law, who also has an M.Bioethics degree, addresses and analyzes the concern about liability and ethical concerns that can surface for clinicians when patients refuse transfer and remain in the rehabilitation setting. In the second essay, Jay M. Brenner, MD, FACEP, Medical Director of the Community Campus Emergency Department, Associate Professor of Emergency Medicine, and Associate Professor of Bioethics and Humanities at State University of New York (SUNY)eUpstate Medical University, tackles the clinical and ethical question of when a patient should be transferred from one setting to another and what factors should be considered in making this difficult decision. Finally, Allison Kessler, MD, a PM&R Resident Physician at Rehabilitation Institute of Chicago in her third year and a colleague on our hospital ethics committee, examines in detail 2 cases in which she was confronted with the decision of whether, and when, to transfer her patient from rehabilitation to acute care. Dr Kessler discusses the similarities and differences between these cases and shares practice points she has developed based on these experiences. After the commentaries, I will provide some concluding remarks about the legal and ethical aspects of this particular type of (informed) refusal. Reference 1. Lantos J, Matlock AM, Wendler D. Clinician integrity and limits to patient autonomy. JAMA 2011;305:495-499.
Informed Refusal in the Rehabilitation Context: Legal Considerations Nadia N. Sawicki, JD, M.Bioethics Beazley Institute for Health Law and Policy, Loyola University Chicago School of Law One of the reasons why rehabilitation physicians may be uncomfortable treating a patient who refuses preemptive transfer to an acute care setting is fear of liability. Although continuing to provide care in a rehabilitation setting respects the patient’s autonomous wishes, the facility may not be optimally equipped to monitor and respond to the patient’s urgent medical needs. Thus, just as providers may believe they are caught in an ethical double-bind between their responsibilities to promote autonomy and practice beneficence/nonmaleficence, they likewise may be concerned about a tension between their legal duty to respect a patient’s right to informed refusal and their legal duty to provide competent medical care. Although the decision about how to proceed in such cases is a difficult one, fear of liability should not be a driving motivator, because the law in such cases is in alignment with providers’ ethical responsibilities. Malpractice law in the United States defers to a
provider’s exercise of reasonable medical judgment, and thus compliance with the norms of clinical practice and medical ethics not only makes good professional sense but also good legal sense. When a competent patient whose medical condition is deteriorating has been fully informed of the risk of continuing care in a traditional rehabilitation setting but still refuses pre-emptive transfer to an acute care setting, the ethical principle of autonomy directs providers to respect the patient’s wishes. The norms of ethical medical practice reject the idea of involuntary treatment of competent and informed patients and prioritize the maintenance of trust-based relationships between patients and providers. Legal norms in this context are no different: Patients have a legal right to medical self-determination that includes the right to refuse even life-saving care. Providing treatment (or, in this case, transferring the patient to a different care setting) against a competent patient’s informed refusal puts providers at risk for a lawsuit on the grounds of battery or negligence. The ethical concerns on the other side, of course, are the principles of beneficence and nonmaleficence,
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which require providers to act in the patient’s best interests and avoid causing harm. Continuing traditional rehabilitation care when a patient’s medical needs demand more aggressive monitoring or medical intervention may lead to further deterioration of the patient’s condition, in which case providers may feel complicit in the causation of harm. But better understanding of medical malpractice lawdwhich also penalizes providers when their conduct results in patient injurydcan help explain why the decision to continue treatment in the rehabilitation setting in the manner the patient requests may be the better choice, from both a legal and an ethical perspective. If managed properly, the continued provision of competent rehabilitation care to a patient who refuses preemptive transfer to an acute care setting poses limited legal risk. Although the legal nuances are complex, 3 basic principles of tort lawdinformed consent and refusal, assumption of risk, and standard of cared support this conclusion. The corollary of the physician’s legal duty to obtain a patient’s informed consent before providing treatment is the competent and informed patient’s legal right to refuse unwanted treatment. If a physician has assessed the patient’s capacity, fully informed the patient of the risks and benefits of treatment and refusal, and adequately documented this conversation in the record, the physician will not be liable if the patient suffers harm arising from the manifestation of one of these underlying risks. Thus, when a patient has been informed that her or his medical needs exceed the types of care the providers in the rehabilitation facility are capable of providing, and that continuing care in the rehabilitation setting (as opposed to an acute care setting) may result in the progressive deterioration of the patient’s condition, the facility and its providers will not be liable if the patient’s condition continues to decline despite their best efforts to provide competent care within their own scope of practice. The patient’s right to informed refusal can be understood as an application of the legal doctrine of primary assumption of risk. This doctrine stipulates that when a person knowingly appreciates and accepts the risks of an inherently dangerous activity (that is, one where the risks are not caused by a third party’s negligence), that person cannot sue if she or he is injured. In the medical context, the doctrine of primary assumption of risk dictates that if an informed patient with acute care needs voluntarily chooses to accept the risks of treatment at a lower level of care, the provider who competently provides such caredcompetency being defined by reference to providers with the same discipline or specialtydwill not be held liable. For this reason, courts have sided with providers in many cases in which patients have suffered harm as a result of refusing recommended care plans or choosing to pursue unconventional treatment options. For example, if a
physician provides a patient with a referral to a specialist and informs the patient that the specialist can better serve that patient’s medical needs, the patient who fails to follow up with the specialist and suffers harm as a result cannot sue [1]. If a patient who is a Jehovah’s Witness chooses to undergo a surgical procedure that poses a risk of blood loss but refuses to consent to a blood transfusion, that patient will be deemed to have assumed the risk of harm resulting from loss of blood despite the surgeon’s competent performance of the procedure [2]. Likewise, patients who choose to pursue experimental treatments [3] or reject treatment entirely [4] after being fully informed of the risks may be barred by the doctrine of assumption of risk from suing their health care providers if those risks arise. According to one court, refusing to protect physicians from liability when they competently treat patients who refuse conventional treatment (whether because of religious beliefs or other personal preferences) would be “repugnant in a society which attempts to make medical care available to all its members” [5]. It is only if a health care provider is negligent in the provision of care by failing to satisfy the standard of care of a reasonably competent practitioner within the same discipline or specialty that the provider will face liability. In such cases, even if the provider has fully informed the patient of the risks of treatment and the patient has expressly waived liability, a negligent provider generally cannot use the patient’s consent as a defense [6]. In determining whether a provider has violated the standard of care and therefore might be subject to liability for malpractice, courts look to the degree of care that a reasonably competent practitioner of that type would exercise under similar circumstances. For example, a physical therapist is only expected to provide the services that licensed physical therapists are permitted to provide, not the services expected of an orthopedist. Likewise, a patient who requires ICU-level monitoring cannot fault a rehabilitation facility for failing to provide such monitoring when that monitoring is not standard among similar facilities. Given these precedential doctrines, rehabilitation providers and facilities seem to face limited risk of liability when they continue to provide high-quality care available in their setting and within their scope of competency at the request of a competent patient who has made an informed refusal of preemptive admission to an acute care facility. In such contexts, going along with the patient’s choice of care plan is likely to be the best way to satisfy the legal and ethical responsibilities to provide quality medical care while respecting a patient’s autonomous wishes. References 1. Adkins v. Sanders, 871 S.2d 732 (Miss. 2004). 2. Shorter v. Drury, 695 P.2d 116 (Wash. 1985).
N.N. Sawicki et al. / PM R 8 (2016) 690-697 3. Boyle v. Revici, 961 F.2d 1060 (2nd Cir. 1992). 4. Lyons v. Walker Regional Medical Center, 868 So.2d 1071 (Ala. 2003).
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5. Shorter v. Drury, 695 P.2d 116, 121 (Wash. 1985). 6. Tunkl v. Regents of the University of California, 383 P.2d 441 (Cal. 1963).
Physicians Should Consider Persuasion and Proportionality in Patient Decisions Jay M. Brenner, MD, FACEP Upstate Medical University, State University of New York An adult patient with decision-making capacity has the ethical and legal right to make an informed decision about whether to refuse transfer from a rehabilitation hospital to an acute care setting for further care. A physician can determine decision-making capacity by assessing the patient’s ability to understand the diagnosis and proposed management, appreciate the risks and benefits, and show reasonable comprehension. The rehabilitation hospital is “required to still treat the patient within the scope allowed by the patient until the patient is stabilized” [1]. There may be limits to the professional obligation to honor this refusal based on the duty to provide appropriate care or the physician’s integrity. The Emergency Medical Treatment and Active Labor Act (EMTALA) requires clinicians to transfer patients exceeding their capabilities to an appropriate hospital. Bitterman [1] notes, “If a patient refuses to consent to a medically indicated transfer, the hospital will not be liable under EMTALA.” However, the Centers for Medicare and Medicaid Services (CMS) implies that a hospital, including a rehabilitation hospital, is only subject to EMTALA if it has a dedicated emergency department [2]. Beyond the legal parameters of EMTALA, physicians within and outside of PM&R have struggled with the clinical and ethical question of when a patient should be transferred from one setting to another over their objection. In the case presented by Lantos et al [3], referenced in the Introduction, a patient refused transfer from a medical ward to the ICU for worsening respiratory function. The patient had a previous prolonged ICU admission, and as a result he was resistant to returning there. He “did not feel comfortable with the ICU staff ” [3]. Here the primary team proposed transfer to the ICU, but they did it in a soft, passive manner as they “began discussions with the patient regarding possible transfer back to the ICU.” I believe they failed to persuade the patient because they did not adequately explore the nature of the patient’s avoidance. Similarly, in our rehabilitation hospital case, stronger efforts to explore the refusal of transfer to acute care and efforts to persuade (but not coerce) might resolve the dilemma. For instance, in the emergency department setting, a 35-year-old man with a history of coronary artery
disease presented with a chief complaint of chest pain. After interpreting a normal electrocardiogram, I ordered a troponin test and a chest radiograph. A nurse called me to the room again because the patient requested to leave. I found him to be agitated, but not in any discomfort. His wife tipped her thumb to her lips with her pinky in the air to signal to me that he had been drinking alcohol prior to arrival. He was acting clinically sober. When I asked why he wanted to leave before completing his evaluation, he said that he was quite anxious because his aunt had died of a myocardial infarction in this very room. The sound of the telemetry monitor was reminding him of her death, and he asked if I could shut it off. He was no longer experiencing chest pain, and therefore I agreed to discontinue telemetry monitoring. He agreed to stay for his troponin test and chest radiograph. Even though he left without being discharged, results of both his troponin test and chest radiograph were normal. Persuasion was effective in the negotiation. Lantos et al [3] goes further than this by stating: (1) patients may choose among the options within the proffered range, but they cannot go beyond it; and (2) the patient’s right to forgo treatment is stronger than the right to receive a particular treatment. In their case, the medical team has made staying on the medical floor an option by broaching transfer to the ICU as only a possibility rather than a necessity. Furthermore, the patient is empowered to refuse transfer because of the stronger right to forgo treatment. Of course, the patient is not truly forgoing treatment, but rather is refusing transfer. This refusal is an imposition on the medical team, who then must provide a level of treatment ill suited for the environment of the medical floor. Lantos et al [3] said that “efficiency, fairness, and costeffectiveness are good reasons to place limits on the extent to which clinicians accept patient requests.” From my perspective, patient safety and risk management considerations should also limit the options presented to the patient in the Lantos case. Patient safety is the patient-focused version of the physician-focused concept of risk management in that avoiding preventable medical errors is the best way to prevent malpractice suits. This patient ended up dying of respiratory arrest on the medical floor, an outcome that could have been prevented had staying on the floor never been a medical option. Nelson et al [4] presented another case in which a patient with decision-making capacity presented to the emergency department with a known pulmonary
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embolism as a result of subtherapeutic anticoagulation but refused to take the recommended anticoagulants. She ended up dying. The follow-up discussion by Nelson et al [4] brought up the importance of proportionality initially presented by Hermere ´n [5]. Proportionality should show “how far a physician should go to intervene over the statements of a patient who has refused necessary care in a manner showing lack of insight.” Nelson et al [4] give an example that a patient who refuses a laceration repair should be countered with persuasion (my emphasis), discussion of alternative means of wound care, and documentation of these attempts. Hermere ´n [5] further elucidated that to determine the relative proportionality, one must imply 3 conditions: (1) the importance of the objective; (2) the relevance of means; and (3) the most favorable option. He argued that a fourth condition of nonexcessiveness exists, along with a fifth condition of choosing the least harmful alternative. In the absence of an obvious legal mandate under EMTALA to transfer a patient who exceeds the rehabilitation hospital’s capabilities, a clinician must consider the proportional response in an ethical framework. How dangerous and risky is the patient’s decision to refuse transfer? How certain is the clinician’s assessment of the patient’s decision-making capacity? How much effort has the clinician put forth to try to accommodate the patient’s request or to persuade the patient’s decision? Why does the patient feel so strongly about refusing transfer? Are these reasons reasonable? What would the clinician do if this were himself/herself or a loved one? Is there time to enlist the patient’s loved ones to try to facilitate the discussion? All of these questions may help the clinician either come to terms with the patient’s request
and see it as reasonable or empower the clinician to deny the request and transfer the patient in spite of the patient’s preference. Ultimately, Wendler [6] sums it up best in his article, “Are Physicians Obligated Always to Act in the Patient’s Best Interests?” Professional integrity is one of the 27 reasons why physicians are not obligated to act in the patient’s best interests, including situations in which one believes that honoring a patient’s request is either futile or harmful [6]. “I cannot do that” is a reasonable response as long as every attempt to persuade the patient to accept the proposed plan has been made and every attempt to accommodate the patient’s request safely has been made. Of course, the physician ought to appreciate, comprehend, and understand the benefits and risks of such a bold decision as though he were the patient himself. The physician also must be careful not to impose his or her value system upon the patient. References 1. Bitterman RA. Providing emergency care under federal law. Dallas, TX: American College of Emergency Physicians; 2000. 2. Centers for Medicare and Medicaid Services. Certification and compliance for the Emergency Medical Treatment and Labor Act (EMTALA). Available at https://www.cms.gov/Medicare/ProviderEnrollment-and-Certification/CertificationandComplianc/Downloads/ EMTALA.pdf. Accessed June 10, 2016. 3. Lantos J, Matlock AM, Wendler D. Clinician integrity and limits to patient autonomy. JAMA 2011;305:495-499. 4. Nelson J, Venkat A, Davenport M. Responding to the refusal of care in the emergency department. Narrat Inq Bioeth 2014;4:75-80. 5. Hermere ´n G. The principle of proportionality: Interpretations and applications. Med Health Care Philos 2012;15:373-382. 6. Wendler D. Are physicians obligated always to act in the patient’s best interests? J Med Ethics 2010;36:66-70.
Ethical Challenges Surrounding Transfer Out of a Rehabilitation Hospital: Reconciling Short- and Long-Term Goals Allison Kessler, MD Northwestern University Feinberg School, Rehabilitation Institute of Chicago It is a physician’s responsibility to offer the best possible care to patients. However, the principle of respect for autonomy dictates that patients ultimately have the right to make decisions that affect their own lives. Thus, challenging ethical dilemmas may arise when a conflict exists between what a physician recommends and what a patient decides. It is particularly troublesome for physicians when a patient’s decision is perceived to be potentially life threatening or when a physician is asked to provide care she or he does not agree with. As a resident physician in a rehabilitation hospital, I have been confronted with some difficult and ethically challenging issues when patients refuse
emergent transfer to another health care facility. I will discuss 2 patient scenarios to illustrate the types of ethical dilemmas I have faced and how similar decisions by different patients may raise distinctly different ethical issues. As physiatrists, some of us treat patients in freestanding rehabilitation hospitals where not all medical interventions can be performed safely as a result of the unavailability of certain medical supplies or medications, lack of specialized training of staff, a low staff to patient ratio, and, in some circumstances, insufficient physician training and experience with specific medical interventions. However, it is not surprising that many patients are unaware of some of these limitations, because in the patient’s mind, “You are a doctor, this is a hospital, so of course I can receive whatever medical care I need here!”
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I recently cared for an elderly man, who, for the purposes of this article, I will call Harold. Harold was undergoing acute inpatient rehabilitation after a cervical spinal cord injury. Both he and his family had made it clear that they would want “everything to be done” in the event of a medical emergency. His age, comorbidities, and already impaired respiratory function made any additional illness worrisome and potentially life threatening. I was called to see Harold because he had a fever. Although I quickly identified the underlying issue as a urinary tract infection and initiated treatment, he did not improve and his vital signs began to worsen. At this point I believed it was no longer safe for him to be at our rehabilitation hospital, and I decided to transfer him to an acute care hospital for more intensive care. The decision to transfer a patient to an acute care facility is not always straightforward and comes with significant disadvantages. Treatment is interrupted, rehabilitation days are lost, function may decline, and economic costs are significant, not to mention the logistical inconvenience to the patient. It is times like these when I find practicing in a rehabilitation hospital can be the most challenging. As a clinician I identified the underlying medical issue and treated it as best I could with the limited acute care resources available to me, but I knew it would not be enough. When I informed the patient that I planned to transfer him, he adamantly refused. He did not want to interrupt his stay at the rehabilitation hospital because it had “taken so long to get here” in the first place, and he was concerned that his insurance would not let him come back. He wanted to “wait it out” to see if he would improve. This desire was particularly frustrating because he continued to request that “everything to be done,” but he wanted to control the timing of the transfer. Although he was able to articulate the risks and benefits on a superficial level, his decision not to be transferred did not align with his wishes to be treated aggressively. I had discussed all the medical reasons for the transfer, as well as my concerns that should he continue to decline, he could potentially face a life-threatening situation because of our inability to further escalate care. When he persisted in his refusal, I knew that eventually this would mandate an emergency transfer under less favorable circumstances that would likely have a much poorer outcome. I was not sure he truly understood the intricacies of a transfer and that his outcome could be seriously affected by “waiting it out.” The situation then came to a head when his blood pressure began to drop further and his mental status deteriorated. At that point, he no longer had the capacity to either accept or refuse treatment. I then believed I was justified in transferring him, because this transfer was ultimately in line with his repeated statements that he
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wanted everything to be done. Fortunately, his wife concurred. In another example, I was called to see a patient who I will name Susan. Prior to admission to the rehabilitation hospital, Susan had undergone a workup for intermittent angina. She had the appropriate medical evaluation for her chest pain and was diagnosed with multivessel stenosis. At that time, she declined surgical intervention. On the inpatient rehabilitation unit, Susan began having angina overnight while getting up to use the restroom. Any other patient would have been transferred immediately to a cardiac care unit. However, she made it clear that even if she were transferred over her objections, she would refuse the treatment offered in the acute care hospitaldsomething she had already been offered and previously declined. She agreed to a “do not resuscitate” (DNR) order, and she stated clearly that under any eventuality she did not want any more invasive interventions other than oral medications or nitroglycerine paste for comfort, which I was already prescribing. In both cases, the patients received suboptimal treatment for their medical problems and asserted their autonomy by refusing medical recommendations. However, for the clinician, the 2 cases are distinctly different. Harold’s refusal to be transferred did not reconcile with his long-term goal and stated preference to “have everything to be done.” Susan’s refusal to be transferred was in alignment with her stated long-term goals, and the DNR order formalized her wishes, permitting a clear conversation about the limits of our ability to treat her, thus satisfying both patient autonomy and physician responsibility. Although I found it personally unsatisfying to see Susan accept suboptimal medical care, I did not feel as ethically challenged as I did with Harold’s refusal, where I felt forced to provide care I believed was inappropriate when looking at his immediate medical needs and his wishes as a whole. In essence, by trying to fulfill Harold’s short-term and long-term goals, it impinged on my responsibility to offer the best care possible to him. And, ironically, Harold’s reluctance to transfer likely lost him more days in rehabilitation; thus, he was not able to fulfill what I have realized was a competing, albeit less highlighted, short-term goal for Harold: to continue with his rehabilitation care as soon as possible. When making the decision to transfer a patient out of a rehabilitation setting, I try to look at the big picture and partner with patients to try to make the decision based on their long-term wishes. However, it is not always easy for patients to think that far in the future. Therefore, I have learned to try to work with patients to discuss how certain medical decisions now will affect their rehabilitative course both in the short and long term. Harold’s case was distressing, because
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by his initial refusal for transfer I was not fulfilling his underlying wish to continue rehabilitation as soon as possible, nor was I allowed to provide him the best medical care. In Susan’s case, although it was
personally unsatisfying to provide less medical care, I could still take solace from truly fulfilling both of her short-term and long-term goals because they were in full alignment.
Guest Editor’s Comments Preya S. Tarsney, JD Northwestern University Feinberg School, Rehabilitation Institute of Chicago As a former practicing lawyer and now a bioethicist, I am keenly aware of the limits of what guidance the law can give us in these situations. Although the law is often the “floor” that sets an understanding of the bare minimum that must be provided, it is often not clear how large that floor space is or how much support it has. Indeed, the law is often clearer about what is not permissibledthat is, forcing treatment on a patient with capacitydand not as clear when it comes to what is permissible. Instead, in these cases, the specific facts of the case will drive how one applies the legal principles in question to those facts. As with applied ethics, we seek to understand the particular situation as we work to adhere to established principles. The law is also dynamic. Laws change. They are different depending on your jurisdiction, and laws may be amended or altered as new cases are confronted. In law school, we are taught the English common law method of applying preexisting case law to new factual circumstances. In this method, lawyers must demonstrate how the existing case law rules should apply to new facts, or whether those legal rules need to be further clarified or altered in light of a set of facts that has never been confronted before. Thus new legal precedent is developed organically. Given this common law process, the law is not static and, especially in the area of medical ethics, few black and white rules exist that will fit all circumstances. Thus it is safe to say that gray areas will persist for some time both in the law and ethics. In other words, sometimes we are left to think through both where the floor and the ceiling are when we are confronted with new issues that require legal and ethical analysis. The contributors raise many important points about refusals of transfers that are followed by requests for treatment. Some questions still persist, namely: How far must one go to satisfy a patient, especially when the patient’s request turns into a demand for specific treatment that rehabilitation practitioners are not comfortable providing? In looking at this question from a legal and risk perspective, it is clear that the right to refuse treatment is greater than the right to demand specific treatment. As Professor Sawicki notes, the law and ethics are aligned when it comes to the right to refuse treatment and “[p]atients have a legal right to medical self-determination that
includes the right to refuse even life-saving care.” However, there is no correlate legal right to demand treatment from practitioners. In fact, we know that practitioners cannot be required to provide care outside of their scope of practice. Thus, how these situations in which patients are demanding specific treatments will actually play out from a legal and ethical standpoint will depend greatly on the facts of the case in question. To examine this further in 2 specific situations, let’s first look at the case of a patient with capacity who has a condition that has developed into a life-threatening situation and needs immediate treatment in the ICU. Generally, 2 options are available to this patient: (1) refuse ICU treatment and likely die in the rehabilitation facility, or (2) transfer to the ICU to receive specific treatment. In this case, it is likely that the physician or clinical administrator from the institution would have to explain why treatment demanded by the patient (ie, the demand to stay in the rehabilitation unit) cannot be provided at the rehabilitation facility but that treatment (ie, transfer to the ICU) can be refused. The option that prevails in this circumstance will be driven by the specific facts of the case and, in some instances, it could be that those facts may reveal other potential options (eg, palliative care) besides the 2 options previously articulated. Contrast this scenario to other cases, which are more typical in rehabilitation, where generally more options are available. For example, in a nonelife-threatening situation, a consultant with relevant expertise (eg, a nephrologist or cardiologist) from an acute care setting could be called to provide specific treatment to the patient for a temporary issue so the patient could continue to remain in a rehabilitation setting. This solution would not work in every type of rehabilitation facility or for every type of consultant, but it is an option in many situations. Furthermore, certain facilities might be able to call on third parties, such as an ombudsperson or an ethics consultant, to offer help in negotiating with patients to see if there is room to satisfy some pieces of their requests and to set up contingency plans for how to handle other pieces. In short, when it comes to demanding certain treatment, we are back in that gray area. As such, the specific facts and culture of the institutions will factor in to a subsequent legal analysis of how the law would protect physicians and institutions or bolster the claims of patients.
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Concluding Remarks Debjani Mukherjee, PhD Northwestern University Feinberg School, Rehabilitation Institute of Chicago Informed refusals in rehabilitation are a key bioethical issue. The fact that patients with capacity have the right to refuse treatment is clearly established by the courts. However, this specific example of refusing a transfer to acute care challenges our thinking about how best to proceed. When discussing this case (and column) among the ethics team at the Rehabilitation Institute of Chicago, several aspects rose to the surface. The first issue is the fact that even a patient with capacity may not be fully informed about what they are refusing; Dr Kessler’s discussion of short-term versus long-term goals highlights one aspect of this situation. The second issue is that negotiation and discussion often may lead to resolution of the refusal; Dr Brenner mentions this possibility in his commentary. And ultimately, as Professor Sawicki points out, respecting the patient’s choice, even choices we don’t agree with, is in line with our legal and ethical responsibilities. Another aspect is also of note. Although we generally think about informed refusals as highlighting a tension between the ethical principles of respect for autonomy and beneficence or nonmaleficence, justice and
allocation of resources are also aspects to consider. For instance, in the case of refusals of emergent transfer, clinicians may need to administer additional treatment to these patients who continue to remain under their care, which could result in less time spent with other patients. The allocation of time and attention is a less discussed but important justice issue in clinical care. The patient’s refusal to transfer could also increase the clinicians’ risk of liability if they inadvertently fail to provide standard of care treatments to their other patients. Other resource trade-offs can arise as well, and to the extent that providers believe they are letting other patients down and not treating patients equitably, this situation can contribute to moral distress. Beyond this, if the patient who refused transfer cannot participate in rehabilitation services but continues to receive care in the rehabilitation setting, then there may be consequences for insurance reimbursement. These unintended consequences of a specific patient’s refusal of transfer are similar to other individual patient choices that have reverberating effects. The complexity of refusing a transfer to acute medical services, therefore, has implications for the individual patient, clinician, and potentially other patients and the institution. In the end, negotiation and compromise by both parties may be the best outcome that can be expected.
Disclosure N.N.S. Beazley Institute for Health Law and Policy, Loyola University Chicago School of Law, Chicago, IL Disclosure: nothing to disclose J.M.B. Upstate Medical University, State University of New York (SUNY), Syracuse, NY Disclosure: nothing to disclose A.K. Northwestern University Feinberg School, Donnelley Ethics Program, Physical Medicine & Rehabilitation, Medical Humanities, Rehabilitation Institute of Chicago, Chicago, IL Disclosure: nothing to disclose
P.S.T. Northwestern University Feinberg School, Donnelley Ethics Program, Physical Medicine & Rehabilitation, Medical Humanities, Rehabilitation Institute of Chicago, Chicago, IL Disclosure: nothing to disclose D.M. Northwestern University Feinberg School, Donnelley Ethics Program, Physical Medicine & Rehabilitation, Medical Humanities, Rehabilitation Institute of Chicago, Chicago, IL. Address correspondence to: D.M.; e-mail: [email protected] Disclosure: nothing to disclose