What Are the Ethical Issues in Treating a Patient With Bilateral Leg Gangrene Incapable of Consenting to Amputation Secondary to Psychiatric Illness?
Abstract
Background
Bilateral and simultaneous lower extremity amputations unrelated to diabetes and peripheral vascular disease are uncommon, although they may be necessary in patients with severe blast injuries. Such amputations, however, usually are performed in patients who are able to understand and consent to the treatment.
Case Description
We present the case of a 29-year-old woman who experienced drug-induced psychosis and underwent substantial hypothermic injuries; most notably, irreversible frostbite injuries to both lower extremities, leading to dry and mummified gangrene. As a result of her psychiatric illness, fluctuating catatonic state, and lack of insight into her clinical condition, she was deemed incapable of making decisions regarding her medical care and her mother was made substitute decision maker. The orthopaedic service was consulted regarding possible surgical treatment of her gangrenous feet that were stable and aseptic after limb preservation efforts (including hyperbaric oxygen) had been tried without success. They recommended close clinical monitoring and continued psychiatric treatment. The family, including the substitute decision maker, citing the patient’s best interest, rejected the recommendations of the surgical team and demanded immediate surgical transtibial amputation of both lower legs.
Literature Review
To our knowledge, such a unique case has not been reported.
Clinical Relevance
We examined the decision-making process, the difficulties of caring for such a patient, and the ethical issues that arose.
Keywords
Cocaine Borderline Personality Disorder Knee Amputation Substitute Decision Maker Orthopaedic ServiceIntroduction
Lower-extremity amputations frequently are necessary in patients with severe diabetes, vascular compromise, and traumatic injuries. Amputations to treat lower-extremity gangrene secondary to cold exposure also have been described [10]. Such amputations, however, usually are performed in patients who are able to understand and consent to the treatment. The social and psychological effects associated with lower-extremity amputations are well documented and not insignificant [5, 9, 17], and should be taken into account whenever possible when deciding on a management plan.
Bilateral long-bone amputation in a medically stable patient who is not capable of making medical decisions has not been described previously to our knowledge. Although uncommon, a multidisciplinary approach is critical when dealing with such patients and their families. Active participation by the surgeon, allied health staff, psychologist or psychiatrist, hospital ethicists, and the patient’s family and friends is most important when trying to ensure a successful outcome.
We present the case of a 29-year-old woman who experienced drug-induced psychosis and had frostbite injuries develop to both lower extremities which led to dry and mummified gangrene. After several interviews with the patient and multiple discussions between the psychiatric and surgical teams, the patient was deemed incapable of making decisions regarding her medical care and a substitute decision maker was appointed. The substitute decision maker rejected the recommendations of the surgical team to continue to observe the patient until she became competent to make her own decisions. The substitutedecision maker demanded immediate surgical transtibial amputation of both lower legs. We examine the decision-making process, the psychological tenants, and the ethical issues that arose.
Case Report
In March 2014, a 29-year-old woman went missing after using cocaine laced with an unknown substance. She was found approximately 1 week later by police in a wooded area. She was severely hypothermic; her feet had been immersed in freezing water, sustaining severe frostbite injuries. She was admitted to the intensive care unit and internal rewarming was initiated, including extracorporeal membrane oxygenation and cardiac bypass. The patient was unresponsive, in critical condition, and her family had not yet been contacted, therefore an emergency consent was signed by the admitting intensivist. Once her family was located, they agreed and consented to the life-saving treatment.
(A) The distal end of each of the patient’s feet is mummified while the proximal end of each is slowly sloughing. There is a transition zone with underlying inflammation. (B) A small area of erythema with exudate underlining the mummified tissue can be seen in the left foot. (C) The foot deformity is the result of the patient ambulating on her right foot to transfer to her wheelchair. (D) Stable, mummified tissue with an erythematous base is evident in both feet. The patient reported no pain despite the appearance of her feet.
Before hospital admission the patient lived in rural southeastern Ontario with her partner. She had owned and operated a small fitness center and worked as a personal trainer and occasional circus performer. Her psychiatric history included early parental separation and at 12 years of age, she began using drugs, including alcohol, marijuana, cocaine, speed, and crack cocaine. She was admitted to the hospital multiple times for drug use, including admission for an episode of drug-induced psychosis that resolved after several months of medical and psychiatric treatment. Her family history was notable for major depressive disorder, borderline traits, anxiety, and substance abuse and dependence. At the time of her admission the patient was not receiving any prescribed medications or undergoing psychotherapy.
In the weeks after her admission, she occasionally would communicate and show insight into her condition. She seemed to appreciate the need for surgical treatment (ie, amputation). However, these short periods of clarity were interspersed with catatonic-like behavior, complete lack of insight, and delusions regarding her condition. She was deemed incompetent by the psychiatric service and a substitute decision maker was appointed after discussions between the family, psychiatric and surgical teams. Considering the patient’s previous psychiatric history and the stable nature of the limb necrosis, the orthopaedic service recommended close monitoring, continuing psychiatric treatment, and that surgery be deferred until either the patient be deemed capable and able to participate in the decision-making process or there were signs of clinical deterioration or progressive necrosis or sepsis that might further risk life or limb. Her family initially rejected this assessment and plan. They believed that the outcome would be improved by earlier amputation and that the patient’s current catatonic state was attributable to anxiety or posttraumatic stress disorder caused by her necrotic feet. These beliefs were not substantiated by the psychiatric service. The orthopaedic service maintained that there was no imminent danger to the patient’s health or the eventual level of the amputation, that bilateral below knee amputation without active participation in a postoperative rehabilitation process could substantially worsen her eventual functional outcome, and that undergoing a major surgical procedure, especially bilateral lower leg amputations without the patient’s direct consent, potentially could cause further psychological decline. The family subsequently agreed to a plan involving psychiatric treatment with daily orthopaedic followup.
Photographs taken (A) 8 weeks after surgery (B) show well-healed incisions with healthy tissue flaps. The patient is ready for prosthesis fitting.
Discussion
The case we report is unusual and complicated from patient-care and bioethical standpoints, and underlines the importance of communication, collaborative multidisciplinary care, and continuity in medical care.
After a long period of observation, diagnoses of cluster-B borderline personality traits (Axis II) and major depressive disorder (moderate to severe–Axis I) [1] were made. The severe emotional stress experienced by our patient owing to the bilateral foot gangrene caused the Axis II disorder to further manifest, substantially interfering with psychiatric and surgical treatments. The loss of her feet would lead not only to the loss of physical integrity but also to the loss of her ability to work, earn wages, maintain her career and business, and her self-esteem. According to Kohut’s theory [16], self-objects are “external objects that function as part of the ‘self machinery’ and are not experienced as separate and independent from the self and are important for emotional survival.” The patient’s body of work was the “self-object” that helped her regulate and maintain self-esteem and psychological equilibrium. Bilateral amputations would threaten her career as a personal fitness trainer and occasional circus performer, therefore the amputations were seen as a substantial threat to her self-worth. Additionally, during her lucid periods, she stated that the loss of her feet and physical integrity would lead to eventual dissolution of her 7-year relationship; our opinion is that this belief triggered unconscious and underlying fears of abandonment [1] to which the patient was prone, further adding to her cumulative stress.
The patient’s actions and behavior caused members of the healthcare team to feel helpless and stuck, a phenomenon in psychoanalytics known as counter-transference [7]. This is a trait typical of borderline personality disorder [11], and a detailed developmental patient history revealed additional traits highly indicative of borderline personality disorder, including childhood sexual assault, oppositional behavior, unstable relationships, impulsivity, chronic feeling of emptiness, legal problems, and periods of homelessness. Making others around her feel helpless, as she felt, gave our patient, at an unconscious level, emotional and psychological relief. From a psychological point of view, identifying this proved helpful in gaining a better understanding of her psychological dilemma and helping her move forward. Respecting the patient’s autonomy while giving her time to mourn the loss of her feet were important in helping her make an informed decision.
Typically, in the case of patients who are capable of making medical decisions, the objective is to enable them to make an informed choice regarding available treatment options or alternatives, such as refusal. In Canada, as in some other liberal democracies, patients who are competent are legally entitled to refuse life-preserving clinical care. A continuation of clinical care against the express wishes of a patient who is competent amounts legally to assault. The process leading to informed consent or refusal depends on the presence of various factors to be ethically valid [8]. Beauchamp and Faden [3] proposed an influential conceptual framework for informed consent involving threshold, information, and consent elements. Threshold elements include the competence to understand and decide and voluntariness. Information elements include disclosure of relevant information, recommendation of a plan of action, and demonstrable patient understanding of the information elements. Consent elements include a decision in favor of a proposed course of action and clear authorization to follow the agreed on plan [3]. Our patient would have needed to be capable of giving voluntary informed consent that meets these standards.
It was determined that the patient was not able to understand the information provided nor did she show appropriate insight, therefore she was deemed incapable and her mother was appointed the substitute decision maker. The ethical rationale for the appointment was that the patient’s next of kin was more familiar with the patient’s values and convictions and so was best suited to make decisions on her behalf. This type of appointment is meant to be an imperfect extension of patient autonomy and the justification rests on empirical assumptions regarding the next of kin’s ability to make sound decisions on behalf of family members. Mirzaei et al. [12] suggested that when a substitute decision maker is appointed after a patient is deemed incapable (rather than chosen by the patient before becoming incapable), the decisions made by the substitute decision maker frequently are at odds with the patient’s wishes. It is for reasons such as these that the decisions made by the substitute decision maker generally are thought of by medical ethicists as carrying less normative force than the actual decisions reached by patients who are competent [6].
Despite family meetings attended by psychiatry, orthopaedic surgery, social work, and nursing, the substitute decision maker and family showed a lack of understanding of the facts and issues and continued to fixate on the need to amputate immediately. The psychiatric service stressed that an urgent amputation would not improve the patient’s psychiatric condition and the orthopaedic service reiterated that an urgent amputation without the patient’s participation was not indicated and likely would compromise her rehabilitation and lead to clinical deterioration. Whether dealing with a patient or a substitute decision maker, the surgeon reserves the right to refuse to perform a procedure as long as this refusal is not done based on moral or religious prejudice [14]. Furthermore, patients and families cannot demand procedures that are not indicated, contraindicated, or go against sound ethical principles [4]. In the considered view of the care team, the lack of understanding and appreciation of medical facts by the substitute decision maker prevented her from making a decision that was in the patient’s best interest. Disagreements between substitute decision makers and healthcare providers are not uncommon [13], and when disagreements arise, both parties are expected to collaborate to come to a decision that is in the patient’s best interest [18]. However, in Ontario, cases in which a consensus cannot be reached in a reasonable time can be appealed to the Consent and Capacity Board. In the current case, the family eventually agreed to a plan involving psychiatric treatment with daily orthopaedic followup for the patient, and therefore the surgical treatment was delayed.
In circumstances where patients are unable to make their own choices, and where they have left no advance directives, physicians are professionally obliged to adhere to the primum non nocere principle, one of the foundations of medical ethics. A version of the principle reported by Beauchamp and Childress [2] more frequently is referred to as do-no-harm-principle, or the principle of nonmaleficence. In the context of health care, harm typically refers to pain, disability, and death. Early amputation at the behest of the substitute decision maker and without the patient’s informed consent would have addressed the gangrene, established the ideal amputation level, and prevented immediate complications such as sepsis and death. The medical ethics principle of beneficence would prima facie support this course of action. However, the course of action also would have further immobilized the patient, and without her participation in postoperative rehabilitation, an increased risk of pressure sores, joint contractures, wound complications, and deep vein thrombosis would have occurred. The alluded to principle of nonmaleficence offers countervailing normative reasons to persons who called (prima facie, at least) for immediate surgery. Surgery brought with it serious risk of further complications. In the absence of autonomous choice-based informed consent, balancing the foreseeable risks and benefits of the available different courses of action, as far as they would affect the patient’s future quality of life, was what was needed. The team’s other rationale for taking this course of action consisted of attempting to restore the patient’s capacity to enable her to make an autonomous informed choice that was her own.
The patient was capable of interacting with staff on some days. During those periods she clearly communicated her desire to wait before undergoing amputation because she was not ready to make a decision. Her reluctance did not appear unreasonable considering her careers as a personal trainer and an occasional circus performer. In the views of psychiatry and orthopaedics, her feet had substantial emotional and professional values for her. Lower-limb amputation in a young, physically and mentally healthy patient is associated with substantial psychological burden [15]. Considering the stability and painlessness of the gangrene, the close surgical monitoring of her condition, and her history of psychological recovery, the surgical team concluded after careful evaluation that the benefits of surgical intervention without the patient’s participation in consent did not outweigh the risks of psychological harm to her prospects of recovery.
Subsequent developments confirmed the assessment reached by the multidisciplinary care team. The patient’s psychological condition improved sufficiently to permit her to make an informed, autonomous choice regarding her preferred course of action which was to undergo amputation and begin the process of prosthesis fitting, physical rehabilitation, and eventual recovery.
The presented case is difficult and complex, one which underlines the difficulty in providing high-quality and timely care to a surgical patient with severe, preexisting mental illness. However, it also underlines the effectiveness of the multidisciplinary approach when dealing with such complex medical and social issues. Although her prognosis from surgical and psychiatric points of view was guarded, at 8 months after the amputations, the patient has undergone prosthetic fitting and is participating in physical therapy and psychiatric followup. The outcome is attributable to collaboration among the surgical and psychiatric teams, nursing staff, social workers, family members, and hospital ethicists.
Notes
Acknowledgments
We thank Tariq Munshi MD MRCP (UK), Duncan Scott MD, FRCP (C), Behnia Haghiri MD, FRCP (C), Sylvia Yankova MD, CCFP, DMP, Kevin Varley MD, FRCP (C), Mohammed Ahsan Habib MD, FRCP (C), Casimiro Cabrera MD, MRCP (UK), Pallavi Nadkarni MD, MRCP (UK), Simon O’Brien MD, FRCP (C), and Stephen McNevin MD, FRCP (C), all from the Department of Psychiatry, Queen’s University (Kingston, Ontario, Canada), for their valuable contributions to the patient’s care and rehabilitation; and to Jean-Francois Taylor BJourn, MA, School of Social and Political Sciences, University of Glasgow (Glasgow, Scotland), for editing contributions.
References
- 1.American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Text Revision. 4th ed. Washington, DC: American Psychiatric Association; 2000.Google Scholar
- 2.Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 7th ed. New York, NY: Oxford University Press; 2012.Google Scholar
- 3.Beauchamp TL, Faden RR. Informed consent: II. Meaning and elements. In: Jennings B, ed. Bioethics. Vol 3. 4th ed. Farmington Hills, MI: Macmillan Reference US; 2014;1682–1687.Google Scholar
- 4.British Medical Association. Medical Ethics Today: The BMA’s Handbook of Ethics and Law. 3rd ed. London, England: BMJ Books; 2012.CrossRefGoogle Scholar
- 5.Coffey L, Gallagher P, Desmond D, Ryall N. Goal pursuit, goal adjustment, and affective well-being following lower limb amputation. Br J Health Psychol. 2014;19:409–424.CrossRefPubMedGoogle Scholar
- 6.Drane JF. Making life and death decisions for incompetent patients: the quality-of-life concept and the best interest standard. Clinical Bioethics: Theory and Practice in Medical Ethical Decision-making. Kansas City, MO: Sheed and Ward; 1994:165–193.Google Scholar
- 7.Etchegoyen RH. The Fundamentals of Psychoanalytic Technique. London, England: Karnac Books; 2005.Google Scholar
- 8.Faden RR, Beauchamp TL. A History and Theory of Informed Consent. New York, NY: Oxford University Press; 1986.Google Scholar
- 9.Fortington LV, Dijkstra PU, Bosmans JC, Post WJ, Geertzen JH. Change in health-related quality of life in the first 18 months after lower limb amputation: a prospective, longitudinal study. J Rehabil Med. 2013;45:587–594.CrossRefPubMedGoogle Scholar
- 10.Gracey L, Ingram D. The diagnosis and management of gangrene from exposure to cold. Br J Surg. 1968;55:302–306.CrossRefPubMedGoogle Scholar
- 11.Linehan MM. Cognitive-Behavioral Treatment of Borderline Personality Disorder. New York, NY: The Guilford Press; 1993.Google Scholar
- 12.Mirzaei K, Milanifar A, Asghari F. Patient’s perspectives of the substitute decision maker: who makes the better decisions? J Med Ethics. 2011;37:523–525.CrossRefPubMedGoogle Scholar
- 13.Orlowski JP, Hein S, Christensen JA, Meinke R, Sincich T. Why doctors use or do not use ethics consultation. J Med Ethics. 2006;32:499–502.PubMedCentralCrossRefPubMedGoogle Scholar
- 14.Physician Advisory Service, College of Physicians and Surgeons of Ontario. Policy Statement #5-08. Physicians and the Ontario Human Rights Code. Available at: https://www.cpso.on.ca/uploadedFiles/downloads/cpsodocuments/policies/policies/human_rights.pdf. Accessed December 28, 2014.
- 15.Rybarczyk B, Nicholas JJ, Nyenhuis DL. Coping with a leg amputation: integrating research and clinical practice. Rehabil Psychol. 1997;42:241–256.CrossRefGoogle Scholar
- 16.Stepansky PE, Goldberg A, eds. Kohut’s Legacy: Contributions to Self Psychology. Hillsdale, NJ: Analytic Press; 1984.Google Scholar
- 17.Turner AP, Williams RM, Norvell DC, Henderson AW, Hakimi KN, Blake DJ, Czerniecki JM. Prevalence and 1-year course of alcohol misuse and smoking in persons with lower extremity amputation as a result of peripheral arterial disease. Am J Phys Med Rehabil. 2014;93:493–502.CrossRefPubMedGoogle Scholar
- 18.Webster GC, Murphy P. Section I. 1.4 Substitute Decision-Making. Available at: http://www.royalcollege.ca/portal/page/portal/rc/common/documents/bioethics/section1/case_1_4_e.pdf. Accessed September 15, 2014.

