TO LIVE, TO DIE
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TO
11. Bach JR, O'Brien J, Krotenberg R, Alba AS: Management of end-stage respifailure in Duchenne muscular dystrophy. Muscle Nerve 1987; 10:177-182 12. Kerby GR, Mayer LS, Pingleton SK: Nocturnal positive pressure ventilation via nasal mask. Am Rev Respir Dis 1987; 135:738-740 13. Baydur A, Gilgoff I, Prentice W, Carlson M, Fischer DA: Decline in respiratory function and experience with long-term assisted ventilation in advanced Duchenne's muscular dystrophy. Chest 1990; 97:884-889 14. Braun NMT, Marino WD: Effect of daily intermittent rest of respiratory muscles in patients with severe chronic airflow limitation (CAL). Chest 1984; 85 (Suppl):59S-60S 15. Committee on Children with Disabilities, Committee on School Health: Children with health impairments in schools. Pediatrics 1990; 86:636-638 16. Pub L No. 101-336, 104 Stat 327 17. Tsu Lao: Tao Te Ching (translation by Gia-Fu Feng, English J). New York, NY, Vintage Books, 1972 ratory
Refusing Treatment During Rehabilitation A Model for Conflict Resolution KATHELEEN REIDY, PhD KELLEY S. CROZIER, MD Philadelphia, Pennsylvania
THE GOAL OF REHABILITATION MEDICINE is to enable physically disabled patients to achieve optimal self-sufficiency and function. Care is provided by a multidisciplinary team, with the patient being an integral team member. Rehabilitation is often lengthy, with inpatient programs lasting as long as six months. During this time, patients must cope with life-altering disabilities that may be irreversible. It is not surprising that treatment refusals arise in this setting. Ethical Decision-Making Models in Medicine
The historical model for medical decision making is paternalism. This model assumes that physicians, with their specialized knowledge, skills, and experience, are best able to determine appropriate medical intervention for patients. This model fails to acknowledge patient autonomy and has largely been replaced by the contractual model of informed consent.' Under this view, a physician is morally responsible for providing only that care which has been mutally agreed on by the patient and physician. For several reasons, medical ethicists have raised questions about the applicability of the contractual model of informed consent in rehabilitation.' Rehabilitation is inherently a team effort requiring the coordinated services of a variety of health care specialists who share authority and responsibility. Rehabilitation is accomplished over an extended period of time, thus allowing ethical concerns to evolve and be played out fully. Interpersonal conflicts may therefore become more prominent. In addition, rehabilitation rarely yields "cures," and life-saving strategies are less frequently implemented. Ethical and medical concerns are (Reidy K, Crozier KS: Refusing treatment during rehabilitation-A model for conflict resolution, In Rehabilitation Medicine-Adding Life to Years [Special Issue]. West J Med 1991 May; 154:622-623) From the Thomas Jefferson University Hospital, Philadelphia, Pennsylvania. Supported in part by awards from the National Institute on Disability and Rehabilitation Research to the Regional Spinal Cord Injury Center of the Delaware Valley (#G0085351235) and the National Rehabilitation Research and Training Center in Spinal Cord Injury (#H133B80017). Bruce Caplan, PhD, provided editorial assistance for this article. Reprint requests to Katheleen Reidy, PhD, Thomas Jefferson University Hospital, Ill S I Ith St, Suite 9604, Philadelphia, PA 19107.
LIVE, TO
DIE
more amorphous, encompassing many aspects of a patient's life. It may be difficult for patients to see the causal relation between weight shifts and the prevention of decubitus ulcers or between range-of-motion exercises and the prevention of contractures. Given the sudden occurrence and catastrophic nature of some disabling conditions, patients and families frequently cannot immediately integrate information about the injury and comprehend long-term ramifications of treatment. The capacity for "informed consent" (or refusal) may thus take time to develop.
The Educational Model Given the limitations of the contractual model in a rehabilitation setting, an alternative "educational" model to guide patient-provider relationships has been proposed.1 Implicit in this model is the belief that a sudden, life-altering illness or injury may render a patient temporarily unable to make fully informed decisions regarding treatment. The weighing of options and potential ramifications of choices may be difficult during the early stages of accommodating to disability. Under the educational model, a physician has greater leeway to guide decision making during the early phases of rehabilitation. The restoration of the patient's ability to make autonomous decisions regarding care is viewed as an evolutionary process. Key elements in the process are patient and family education, experience in therapy, and frequent opportunities for discussions with care providers. An external review committee to monitor the patient's status is also vital. Despite an allowance for paternalism early in the rehabilitation process, the educational model stipulates that informed consent is necessary if potentially life-threatening treatments or procedures are recommended. Attempts should be made to accommodate patient requests whenever feasible. Patients always retain the right to legal counsel, if desired. The guiding principle in the educational model is not to limit a patient's rights but rather to restore full autonomy through education and appropriate physical and emotional care.
Treatment Refusals in Rehabilitation When patients reject, refuse, or challenge treatment recommendations that the team thinks are vital, a crisis can be precipitated. Medically necessary care to prevent the development of a life-threatening illness or treatment that would ultimately improve a patient's quality of life may be refused. These refusals by "difficult patients" challenge staff members' views of themselves as benevolent, selfless care givers and can engender staff dissension and discontent. When a refusal crisis occurs, the rehabilitation team must determine the reasons for the treatment refusal and develop a rational, caring response. The patient's medical needs and personal wishes should be identified and clarified, and the patient's decision-making competence may need to be formally assessed. Severely impaired cognitive processing due to a thought disorder, affective disorder, or central nervous system impairment may result in incompetence, but these conditions are present in only a small portion of patients who refuse treatment. Stereotypic beliefs about patients must be avoided. For example, the team may assume that a treatment refusal reflects emotional turmoil that is clouding judgment. The team may even view this as suicidal behavior by a patient. While
THE WESTERN JOURNAL OF MEDICINE *
MAY 1991
*
154 * 5
depression does occur in response to disability, rehabilitation teams tend to overestimate the incidence and intensity.2 Each treatment refusal or patient challenge must be examinsed and managed on an individual basis. The context from which the refusal arises and the personal and medical history of a patient may elucidate the specific factors motivating the patient's refusal of treatment and lead to a workable solution. The following rehabilitation cases illustrate some factors underlying treatment -refusals. Family Medical History Influences Treatment Refusal The patient, a 47-year-old man, became a C-5 quadriplegic as a result of a motor vehicle accident. Early in his hospital stay, he required a tracheostomy. Five weeks after his injury, a severe pneumonia developed and the patient needed mechanical ventilation. He vehemently refused this intervention. The staff first thought this decision reflected suicidal intent. Conversations with the patient and his family revealed that he had watched his terminally ill mother linger through a long hospital stay while on a ventilator and had vowed to avoid a similar situation. After the team clarified his medical status and explained that the likelihood ofprolonged mechanical ventilation was slight, his fears were alleviated and he agreed to the intervention.
Prolonged Loss of Control Produces Pervasive Resistance to Care The patient, a 17-year-old high school senior, was the victim of a "drive-by" shooting that resulted in a C-7 quadriplegia. The family characterized him as a diligent, hardworking young man who previously was not prone to rebellious behavior. His rehabilitation was delayed in part by his noncompliance. His intermittent refusal of nursing care after his first week in the hospital resulted in deteriorating pulmonary status with recurrent pneumonia and decubitus ulcers. He angrily refused nursing care procedures that were considered medically necessary. Because he was a minor, his family's wishes took precedence, and treatment was provided. Numerous conversations with the patient revealed that he was generally frightened and traumatized by the loss of control of both his body and life. He responded well to empathic support and education. Choices were offered whenever possible regarding his care. Incongruence of Patient-Team Goals and Values The patient, a 70-year-old woman with a below-the-knee amputation due to peripheral vascular disease, was admitted for rehabilitation. The treating team thought that the goal of independent ambulation with prosthesis and a walker was reasonable. The patient, however, did not want to walk. She saw herself as an elderly woman who was able to afford the services of assisted care. She was content to live at a wheelchair level, and her family agreed with this plan. The staff was distressed by her unwillingness to challenge herself and adopt the goals that they had set for her. Despite the persuasive efforts of her therapists, the patient remained firm in her decision not to attempt walking again. Although the rehabili-
623
tation team had set certain goals, the patient neither shared these goals nor agreed to them on admission. She was discharged after ten days of rehabilitation,, independent in wheelchair skills. It was necessary for the rehabilitation team to reflect on the need to respect differing goals and values. Recommendations for Conflict Management We have found that the following strategies help to keep patient-team care conflicts from erupting and can guide problem solving when conflicts arise: * Patients should be involved in setting goals and planning treatment on admission. Treatment objectives should be discussed by the physician and patient, documented, and placed in the chart for update and reference. This contract may serve as the basis for education and discussion and helps to encourage a shared perspective and purpose. * The rehabilitation team should develop guidelines regarding medically necessary care. Some aspects of treatment may be administered in a more flexible manner, enhancing patients' sense of control. For example, suctioning may be considered medically necessary, but attempts should be made to involve the patient in the scheduling of the procedure. * Patients and families should have regular opportunities to express their needs, wishes, opinions, and fears regarding their care and treatment. Patients need time to voice concerns in private. Psychological services, family meetings, and updates from the team on patients' progress are necessary. * Rehabilitation team members also need regular opportunities to discuss their concerns and ideas regarding the care of patients, as well as their professional role, demands, and responses to difficult situations. Patient care conferences rarely provide sufficient opportunity for open, frank expression of individual concerns. When patients challenge or refuse care, special meetings may be needed. Expert clinical supervision of care givers is vital to provide guidance and prevent job burnout.
Conclusion It is not easy to deal with a patient who is refusing care. Health professionals may be frustrated by treatment refusals. It is important at all times to have open lines of communication with the patient, family, and treating team.3 If a decision is made to override a patient's autonomy, this must be carefully examined to specify exactly which treatment is to be "forced," the rationale for this action, and the time course for this treatment. Throughout this process, the patient must be supported psychologically. Treatment refusal conflicts may be more agreeably resolved by careful adherence to the guidelines prescribed above, with the patient as an active vocal member of the team. REFERENCES 1. Caplan A, Callahan D, Haas J: Ethical and Policy Issues in Rehabilitation Medicine. Briarcliff Manor, NY, Hastings Center, 1987 2. Cushman LA, Dijkers MP: Depressed mood in spinal cord injured patients: Staff perceptions and patient realities. Arch Phys Med Rehabil 1990; 71:191-197 3. Maynard F: Deciding to Live or Die With Ventilator-Dependent Quadriplegia: The Professional's Role. Presented at the 16th annual meeting of the American Spinal Injury Association, Orlando, Fla, May 1990
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11. Bach JR, O'Brien J, Krotenberg R, Alba AS: Management of end-stage respifailure in Duchenne muscular dystrophy. Muscle Nerve 1987; 10:177-182 12. Kerby GR, Mayer LS, Pingleton SK: Nocturnal positive pressure ventilation via nasal mask. Am Rev Respir Dis 1987; 135:738-740 13. Baydur A, Gilgoff I, Prentice W, Carlson M, Fischer DA: Decline in respiratory function and experience with long-term assisted ventilation in advanced Duchenne's muscular dystrophy. Chest 1990; 97:884-889 14. Braun NMT, Marino WD: Effect of daily intermittent rest of respiratory muscles in patients with severe chronic airflow limitation (CAL). Chest 1984; 85 (Suppl):59S-60S 15. Committee on Children with Disabilities, Committee on School Health: Children with health impairments in schools. Pediatrics 1990; 86:636-638 16. Pub L No. 101-336, 104 Stat 327 17. Tsu Lao: Tao Te Ching (translation by Gia-Fu Feng, English J). New York, NY, Vintage Books, 1972 ratory
Refusing Treatment During Rehabilitation A Model for Conflict Resolution KATHELEEN REIDY, PhD KELLEY S. CROZIER, MD Philadelphia, Pennsylvania
THE GOAL OF REHABILITATION MEDICINE is to enable physically disabled patients to achieve optimal self-sufficiency and function. Care is provided by a multidisciplinary team, with the patient being an integral team member. Rehabilitation is often lengthy, with inpatient programs lasting as long as six months. During this time, patients must cope with life-altering disabilities that may be irreversible. It is not surprising that treatment refusals arise in this setting. Ethical Decision-Making Models in Medicine
The historical model for medical decision making is paternalism. This model assumes that physicians, with their specialized knowledge, skills, and experience, are best able to determine appropriate medical intervention for patients. This model fails to acknowledge patient autonomy and has largely been replaced by the contractual model of informed consent.' Under this view, a physician is morally responsible for providing only that care which has been mutally agreed on by the patient and physician. For several reasons, medical ethicists have raised questions about the applicability of the contractual model of informed consent in rehabilitation.' Rehabilitation is inherently a team effort requiring the coordinated services of a variety of health care specialists who share authority and responsibility. Rehabilitation is accomplished over an extended period of time, thus allowing ethical concerns to evolve and be played out fully. Interpersonal conflicts may therefore become more prominent. In addition, rehabilitation rarely yields "cures," and life-saving strategies are less frequently implemented. Ethical and medical concerns are (Reidy K, Crozier KS: Refusing treatment during rehabilitation-A model for conflict resolution, In Rehabilitation Medicine-Adding Life to Years [Special Issue]. West J Med 1991 May; 154:622-623) From the Thomas Jefferson University Hospital, Philadelphia, Pennsylvania. Supported in part by awards from the National Institute on Disability and Rehabilitation Research to the Regional Spinal Cord Injury Center of the Delaware Valley (#G0085351235) and the National Rehabilitation Research and Training Center in Spinal Cord Injury (#H133B80017). Bruce Caplan, PhD, provided editorial assistance for this article. Reprint requests to Katheleen Reidy, PhD, Thomas Jefferson University Hospital, Ill S I Ith St, Suite 9604, Philadelphia, PA 19107.
LIVE, TO
DIE
more amorphous, encompassing many aspects of a patient's life. It may be difficult for patients to see the causal relation between weight shifts and the prevention of decubitus ulcers or between range-of-motion exercises and the prevention of contractures. Given the sudden occurrence and catastrophic nature of some disabling conditions, patients and families frequently cannot immediately integrate information about the injury and comprehend long-term ramifications of treatment. The capacity for "informed consent" (or refusal) may thus take time to develop.
The Educational Model Given the limitations of the contractual model in a rehabilitation setting, an alternative "educational" model to guide patient-provider relationships has been proposed.1 Implicit in this model is the belief that a sudden, life-altering illness or injury may render a patient temporarily unable to make fully informed decisions regarding treatment. The weighing of options and potential ramifications of choices may be difficult during the early stages of accommodating to disability. Under the educational model, a physician has greater leeway to guide decision making during the early phases of rehabilitation. The restoration of the patient's ability to make autonomous decisions regarding care is viewed as an evolutionary process. Key elements in the process are patient and family education, experience in therapy, and frequent opportunities for discussions with care providers. An external review committee to monitor the patient's status is also vital. Despite an allowance for paternalism early in the rehabilitation process, the educational model stipulates that informed consent is necessary if potentially life-threatening treatments or procedures are recommended. Attempts should be made to accommodate patient requests whenever feasible. Patients always retain the right to legal counsel, if desired. The guiding principle in the educational model is not to limit a patient's rights but rather to restore full autonomy through education and appropriate physical and emotional care.
Treatment Refusals in Rehabilitation When patients reject, refuse, or challenge treatment recommendations that the team thinks are vital, a crisis can be precipitated. Medically necessary care to prevent the development of a life-threatening illness or treatment that would ultimately improve a patient's quality of life may be refused. These refusals by "difficult patients" challenge staff members' views of themselves as benevolent, selfless care givers and can engender staff dissension and discontent. When a refusal crisis occurs, the rehabilitation team must determine the reasons for the treatment refusal and develop a rational, caring response. The patient's medical needs and personal wishes should be identified and clarified, and the patient's decision-making competence may need to be formally assessed. Severely impaired cognitive processing due to a thought disorder, affective disorder, or central nervous system impairment may result in incompetence, but these conditions are present in only a small portion of patients who refuse treatment. Stereotypic beliefs about patients must be avoided. For example, the team may assume that a treatment refusal reflects emotional turmoil that is clouding judgment. The team may even view this as suicidal behavior by a patient. While
THE WESTERN JOURNAL OF MEDICINE *
MAY 1991
*
154 * 5
depression does occur in response to disability, rehabilitation teams tend to overestimate the incidence and intensity.2 Each treatment refusal or patient challenge must be examinsed and managed on an individual basis. The context from which the refusal arises and the personal and medical history of a patient may elucidate the specific factors motivating the patient's refusal of treatment and lead to a workable solution. The following rehabilitation cases illustrate some factors underlying treatment -refusals. Family Medical History Influences Treatment Refusal The patient, a 47-year-old man, became a C-5 quadriplegic as a result of a motor vehicle accident. Early in his hospital stay, he required a tracheostomy. Five weeks after his injury, a severe pneumonia developed and the patient needed mechanical ventilation. He vehemently refused this intervention. The staff first thought this decision reflected suicidal intent. Conversations with the patient and his family revealed that he had watched his terminally ill mother linger through a long hospital stay while on a ventilator and had vowed to avoid a similar situation. After the team clarified his medical status and explained that the likelihood ofprolonged mechanical ventilation was slight, his fears were alleviated and he agreed to the intervention.
Prolonged Loss of Control Produces Pervasive Resistance to Care The patient, a 17-year-old high school senior, was the victim of a "drive-by" shooting that resulted in a C-7 quadriplegia. The family characterized him as a diligent, hardworking young man who previously was not prone to rebellious behavior. His rehabilitation was delayed in part by his noncompliance. His intermittent refusal of nursing care after his first week in the hospital resulted in deteriorating pulmonary status with recurrent pneumonia and decubitus ulcers. He angrily refused nursing care procedures that were considered medically necessary. Because he was a minor, his family's wishes took precedence, and treatment was provided. Numerous conversations with the patient revealed that he was generally frightened and traumatized by the loss of control of both his body and life. He responded well to empathic support and education. Choices were offered whenever possible regarding his care. Incongruence of Patient-Team Goals and Values The patient, a 70-year-old woman with a below-the-knee amputation due to peripheral vascular disease, was admitted for rehabilitation. The treating team thought that the goal of independent ambulation with prosthesis and a walker was reasonable. The patient, however, did not want to walk. She saw herself as an elderly woman who was able to afford the services of assisted care. She was content to live at a wheelchair level, and her family agreed with this plan. The staff was distressed by her unwillingness to challenge herself and adopt the goals that they had set for her. Despite the persuasive efforts of her therapists, the patient remained firm in her decision not to attempt walking again. Although the rehabili-
623
tation team had set certain goals, the patient neither shared these goals nor agreed to them on admission. She was discharged after ten days of rehabilitation,, independent in wheelchair skills. It was necessary for the rehabilitation team to reflect on the need to respect differing goals and values. Recommendations for Conflict Management We have found that the following strategies help to keep patient-team care conflicts from erupting and can guide problem solving when conflicts arise: * Patients should be involved in setting goals and planning treatment on admission. Treatment objectives should be discussed by the physician and patient, documented, and placed in the chart for update and reference. This contract may serve as the basis for education and discussion and helps to encourage a shared perspective and purpose. * The rehabilitation team should develop guidelines regarding medically necessary care. Some aspects of treatment may be administered in a more flexible manner, enhancing patients' sense of control. For example, suctioning may be considered medically necessary, but attempts should be made to involve the patient in the scheduling of the procedure. * Patients and families should have regular opportunities to express their needs, wishes, opinions, and fears regarding their care and treatment. Patients need time to voice concerns in private. Psychological services, family meetings, and updates from the team on patients' progress are necessary. * Rehabilitation team members also need regular opportunities to discuss their concerns and ideas regarding the care of patients, as well as their professional role, demands, and responses to difficult situations. Patient care conferences rarely provide sufficient opportunity for open, frank expression of individual concerns. When patients challenge or refuse care, special meetings may be needed. Expert clinical supervision of care givers is vital to provide guidance and prevent job burnout.
Conclusion It is not easy to deal with a patient who is refusing care. Health professionals may be frustrated by treatment refusals. It is important at all times to have open lines of communication with the patient, family, and treating team.3 If a decision is made to override a patient's autonomy, this must be carefully examined to specify exactly which treatment is to be "forced," the rationale for this action, and the time course for this treatment. Throughout this process, the patient must be supported psychologically. Treatment refusal conflicts may be more agreeably resolved by careful adherence to the guidelines prescribed above, with the patient as an active vocal member of the team. REFERENCES 1. Caplan A, Callahan D, Haas J: Ethical and Policy Issues in Rehabilitation Medicine. Briarcliff Manor, NY, Hastings Center, 1987 2. Cushman LA, Dijkers MP: Depressed mood in spinal cord injured patients: Staff perceptions and patient realities. Arch Phys Med Rehabil 1990; 71:191-197 3. Maynard F: Deciding to Live or Die With Ventilator-Dependent Quadriplegia: The Professional's Role. Presented at the 16th annual meeting of the American Spinal Injury Association, Orlando, Fla, May 1990
