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Case Presentation
446
Journal of Pain and Symptom Management
Ethics Rounds Edited by Joseph J. Fins, MD
Case Presentation: When Is Palliative Care Alone Appropriate? Robin L. Fainsinger, MD and Luis Te, MD
A 24-year-old female patient was admitted via the Emergency Room after being found unconscious at home. She had overdosed on a number of medications and required admission to the intensive care unit. During a three and half-month hospitalization, she underwent extensive investigation and had a number of medical complications, which included bacterial endocarditis and pneumonia. An EEG suggested findings compatible with diffuse cerebral dysfunction. CT scans of the brain were normal. The patient required both a tracheostomy and insertion of a percutaneous gastrostomy for provision of enteral nutrition. The patient eventually stabilized and was transferred to a long-term care institution. The patient’s extensive brain damage resulted in periods of agitated behavior. This proved to be a major problem for her caregivers. Admission to a psychiatric institution resulted, with the admission note indicating that
Robin L. Fainsinger MD, is Associate Professor, Division of Palliative Medicine, Department of Oncology, University of Alberta, and Director, Palliative Care Program, Royal Alexandra Hospital, Edmonton, Alberta, Canada. Luis Te, MD is a physician in the Department of Internal Medicine, Royal Alexandra Hospital, Edmonton, Alberta, Canada. Address reprint requests to: Robin L. Fainsinger, MD, Director, Palliative Care Program, Royal Alexandra Hospital, 10240 Kingsway, Edmonton, Alberta, Canada, T5H 3V9. Send your contributions to Ethics Rounds to: Joseph J. Fins, MD, New York Presbyterian Hospital, Cornell Campus, 525 East 68th Street, Box 297, New York, NY 10021, USA.
Vol. 17 No. 6 June 1999
the plan was to subdue her behavior with pharmacological management, and eventually return her to the long-term care institution. Unfortunately, the patient developed neuroleptic malignant syndrome secondary to psychotropic drugs, as well as aspiration pneumonia and pulmonary edema. Intubation and readmission to the intensive care unit was necessary for a few days. She was then transferred to a general medical ward. Upon transfer, she was obtunded. The staff of the intensive care unit indicated that due to the patient’s deteriorated condition, a readmission to the intensive care unit would not be considered. Discussion with the family followed regarding the need to make a decision on resuscitation status, management of infectious complications, and ongoing enteral nutrition. The attending staff, including physicians, nurses and social workers, arranged a family conference to review these decisions. The family indicated that they saw no point to further life-prolonging measures. As a result, the intravenous antibiotics and enteral nutrition via the percutaneous gastrostomy were discontinued. It was also agreed that no cardiopulmonary resuscitation was to be attempted. The attending physician had concerns regarding the “compassionate care approach,” but had deferred to the combined opinion of the other members of the interdisciplinary team and the family. At this point, the major remaining problem from the family and staff perspectives was the patient’s intermittent agitated behavior. A consult from the palliative care program in the hospital was requested for advice on managing this problem. The palliative care physician noted the previous medical history and the interdisciplinary health care involvement with the family in reaching the previous medical decisions. The patient was receiving morphine in the range of 5 to 20 mg subcutaneously per day, in response to her agitated behavior and attempts to get out of bed. The family indicated that this was unsuccessful and requested further pharmacological management for improved control of this problem. The history and examination findings did not indicate any rationale for believing that the patient was experiencing pain. In addition, the morphine was obviously ineffective and inappropriate in managing the agitated behavior. It was suggested that a more appropriate alternative would
Vol. 17 No. 6 June 1999
Ethics Rounds
be a continuous subcutaneous infusion of midazolam. The patient was started on midazolam 50 mg in a total volume of 50 cc of D5W, beginning with 1 mg per hour with instructions to titrate up to 10 mg per hour as necessary. It was noted in the palliative care consult record that “given the patient’s present deteriorated condition and the decision not to treat any infectious complications, it is likely that the patient will continue to deteriorate rapidly over the next few days.” The next day there had been no improvement noted despite the midazolam infusion having been increased to 7 mg per hour. As a result, the concentration of midazolam was increased up to 2 mg per hour and over the next 24 hours, was titrated up to 30 mg per hour, again with very poor results. The nursing and family observations indicated that the patient remained restless and alert at times, and had managed to fall out of bed on one occasion. The patient’s attending physician and the palliative care consultant were in agreement that the management of this patient’s problems were unsatisfactory. The attending physician continued to feel that the “compassionate care approach” might be inappropriate. The palliative care consultant was concerned that despite the patient’s “deteriorated condition,” there was no sign of further deterioration from her underlying medical problems, and the midazolam infusion at increasing doses was proving remarkably ineffective. At this point, the midazolam infusion was discontinued 48 hours after being initiated. A consult was requested from an internal medicine specialist with an interest in ethical dilemmas. The consulting physician noted that the patient aroused quickly when examined and began to move actively in bed. She was noted to
447
be relatively well nourished. Physically she was in good condition “as evidenced by the very considerable force that is required to restrain her when this is necessary.” In view of the patient’s physical condition and lack of evidence of deterioration from her infectious complications, it was considered that she may still have the potential to live for a considerable period of time. Under these circumstances, it was suggested that withholding of enteral nutrition was not acceptable. This recommendation was discussed with the family who agreed to the reinstitution of enteral nutrition via the percutaneous gastrostomy. A protracted hospital admission of six months ensued. During this time, the patient underwent a remarkable recovery. Her infectious complications resolved. In response to her attempts to get out of bed, she was mobilized and proved to be increasingly independently mobile. She required constant supervision but was able to walk considerable distances in the hospital. She appeared to recognize some of her family members and was able occasionally to say a few words. She was maintained on enteral nutrition but was able to tolerate some oral intake under careful supervision. The main reason for her long hospital admission was the difficulty of finding an institution or health care authority able to provide for her ongoing supervision. When arrangements for a suitable placement had been completed, the patient was discharged. How appropriate was the process and the decision to label this patient as suitable for palliative care only? What is the role of the attending and consulting staff in resolving this controversy? PII S0885-3924(99)00027-5
Journal of Pain and Symptom Management
Ethics Rounds Edited by Joseph J. Fins, MD
Case Presentation: When Is Palliative Care Alone Appropriate? Robin L. Fainsinger, MD and Luis Te, MD
A 24-year-old female patient was admitted via the Emergency Room after being found unconscious at home. She had overdosed on a number of medications and required admission to the intensive care unit. During a three and half-month hospitalization, she underwent extensive investigation and had a number of medical complications, which included bacterial endocarditis and pneumonia. An EEG suggested findings compatible with diffuse cerebral dysfunction. CT scans of the brain were normal. The patient required both a tracheostomy and insertion of a percutaneous gastrostomy for provision of enteral nutrition. The patient eventually stabilized and was transferred to a long-term care institution. The patient’s extensive brain damage resulted in periods of agitated behavior. This proved to be a major problem for her caregivers. Admission to a psychiatric institution resulted, with the admission note indicating that
Robin L. Fainsinger MD, is Associate Professor, Division of Palliative Medicine, Department of Oncology, University of Alberta, and Director, Palliative Care Program, Royal Alexandra Hospital, Edmonton, Alberta, Canada. Luis Te, MD is a physician in the Department of Internal Medicine, Royal Alexandra Hospital, Edmonton, Alberta, Canada. Address reprint requests to: Robin L. Fainsinger, MD, Director, Palliative Care Program, Royal Alexandra Hospital, 10240 Kingsway, Edmonton, Alberta, Canada, T5H 3V9. Send your contributions to Ethics Rounds to: Joseph J. Fins, MD, New York Presbyterian Hospital, Cornell Campus, 525 East 68th Street, Box 297, New York, NY 10021, USA.
Vol. 17 No. 6 June 1999
the plan was to subdue her behavior with pharmacological management, and eventually return her to the long-term care institution. Unfortunately, the patient developed neuroleptic malignant syndrome secondary to psychotropic drugs, as well as aspiration pneumonia and pulmonary edema. Intubation and readmission to the intensive care unit was necessary for a few days. She was then transferred to a general medical ward. Upon transfer, she was obtunded. The staff of the intensive care unit indicated that due to the patient’s deteriorated condition, a readmission to the intensive care unit would not be considered. Discussion with the family followed regarding the need to make a decision on resuscitation status, management of infectious complications, and ongoing enteral nutrition. The attending staff, including physicians, nurses and social workers, arranged a family conference to review these decisions. The family indicated that they saw no point to further life-prolonging measures. As a result, the intravenous antibiotics and enteral nutrition via the percutaneous gastrostomy were discontinued. It was also agreed that no cardiopulmonary resuscitation was to be attempted. The attending physician had concerns regarding the “compassionate care approach,” but had deferred to the combined opinion of the other members of the interdisciplinary team and the family. At this point, the major remaining problem from the family and staff perspectives was the patient’s intermittent agitated behavior. A consult from the palliative care program in the hospital was requested for advice on managing this problem. The palliative care physician noted the previous medical history and the interdisciplinary health care involvement with the family in reaching the previous medical decisions. The patient was receiving morphine in the range of 5 to 20 mg subcutaneously per day, in response to her agitated behavior and attempts to get out of bed. The family indicated that this was unsuccessful and requested further pharmacological management for improved control of this problem. The history and examination findings did not indicate any rationale for believing that the patient was experiencing pain. In addition, the morphine was obviously ineffective and inappropriate in managing the agitated behavior. It was suggested that a more appropriate alternative would
Vol. 17 No. 6 June 1999
Ethics Rounds
be a continuous subcutaneous infusion of midazolam. The patient was started on midazolam 50 mg in a total volume of 50 cc of D5W, beginning with 1 mg per hour with instructions to titrate up to 10 mg per hour as necessary. It was noted in the palliative care consult record that “given the patient’s present deteriorated condition and the decision not to treat any infectious complications, it is likely that the patient will continue to deteriorate rapidly over the next few days.” The next day there had been no improvement noted despite the midazolam infusion having been increased to 7 mg per hour. As a result, the concentration of midazolam was increased up to 2 mg per hour and over the next 24 hours, was titrated up to 30 mg per hour, again with very poor results. The nursing and family observations indicated that the patient remained restless and alert at times, and had managed to fall out of bed on one occasion. The patient’s attending physician and the palliative care consultant were in agreement that the management of this patient’s problems were unsatisfactory. The attending physician continued to feel that the “compassionate care approach” might be inappropriate. The palliative care consultant was concerned that despite the patient’s “deteriorated condition,” there was no sign of further deterioration from her underlying medical problems, and the midazolam infusion at increasing doses was proving remarkably ineffective. At this point, the midazolam infusion was discontinued 48 hours after being initiated. A consult was requested from an internal medicine specialist with an interest in ethical dilemmas. The consulting physician noted that the patient aroused quickly when examined and began to move actively in bed. She was noted to
447
be relatively well nourished. Physically she was in good condition “as evidenced by the very considerable force that is required to restrain her when this is necessary.” In view of the patient’s physical condition and lack of evidence of deterioration from her infectious complications, it was considered that she may still have the potential to live for a considerable period of time. Under these circumstances, it was suggested that withholding of enteral nutrition was not acceptable. This recommendation was discussed with the family who agreed to the reinstitution of enteral nutrition via the percutaneous gastrostomy. A protracted hospital admission of six months ensued. During this time, the patient underwent a remarkable recovery. Her infectious complications resolved. In response to her attempts to get out of bed, she was mobilized and proved to be increasingly independently mobile. She required constant supervision but was able to walk considerable distances in the hospital. She appeared to recognize some of her family members and was able occasionally to say a few words. She was maintained on enteral nutrition but was able to tolerate some oral intake under careful supervision. The main reason for her long hospital admission was the difficulty of finding an institution or health care authority able to provide for her ongoing supervision. When arrangements for a suitable placement had been completed, the patient was discharged. How appropriate was the process and the decision to label this patient as suitable for palliative care only? What is the role of the attending and consulting staff in resolving this controversy? PII S0885-3924(99)00027-5