When Proxy Raises Concern for Social Worker

Abstract

JEFFERY. NICHOLS is president of the New York Medical Directors Association. He also is cofounder of the New York Long-Term Care Ethics Network and is a long-time member of AMDA's Ethics Committee. The views expressed in the Medical Ethics column are those of the writer.The CaseMrs. Z, a 90-year-old widow with advanced dementia, was admitted from Hospital A to a nursing home's NF dementia unit. But on admission, her health care proxy insisted that she be transferred to the skilled nursing facility subacute unit for rehabilitation before returning to her home.“I wasn't really planning for her to ever be in a nursing home, but the hospital doctors said she could be back walking with a walker with a couple days of rehab,” her health care proxy said. He presented papers that appeared valid, designating him with both her power of attorney and durable power of attorney for health care (health care proxy or agent).Mrs. Z had been admitted to the hospital with urosepsis and had received 2 weeks of intravenous antibiotics followed by a week of oral metronidazole and intravenous fluids for her subsequent Clostridium difficile diarrhea. She had been stable at home for the previous 3 years on no medications except thyroid replacement, acetaminophen for her arthritic knees, and a monthly vitamin B12 injection.Because the patient had been well known to the visiting nurse who gave the injections, the nurse was able to confirm that Mrs. Z had been walking inside her own home with a walker until the day before hospital admission. But the nurse also warned that the home health agency might not accept Mrs. Z back because its social worker found her living situation “unsafe.”Mrs. Z was transferred to the subacute unit. Before the nursing home's social worker could visit the patient or meet with the family, the hospital's social worker called to insist that “under no circumstances” should Mrs. Z be discharged home. She described the proxy as abusive and dangerous because he had threatened and cursed at Mrs. Z in the hospital.Only after careful questioning was it made clear that the person who had been threatened and cursed at was the hospital's social worker, who was unable to describe any negative behavior by the proxy toward Mrs. Z. The social worker asserted that the proxy was financially exploiting the patient, and that the entire home situation was “unhealthy.”Mrs. Z was a charming, white-haired lady whose speech was limited to saying “yes” and babbling, but she had a lovely, sunny smile. She had multiple recent ecchymoses at venipuncture sites and others in the pattern of fingers on both upper arms, apparently where she had been transferred roughly in the hospital, but otherwise seemed well. Her laboratory tests were normal with excellent nutritional parameters. She responded well to the physical therapists, and within 2 weeks she was using her walker with supervision. Mrs. Z's proxy proposed discharge with home care.On the surface, nothing about this discharge seemed dangerous. The resident was returning to her own home in the care of her legally designated representative, who wanted to take care of her and had previously done so. Nevertheless, when multiple warnings from professionals suggested icebergs in the water, caution seemed advised. From the day of admission, the home began its own assessment to determine the safety of discharge.First, the home care agency was called to ascertain its concerns, which were multiple. The agency was concerned because Mr. C, the proxy, was not a blood relative. He had been Mrs. Z's daughter's boyfriend and was living with the two of them in Mrs. Z's apartment when the daughter developed ovarian cancer and died.After some time, a new girlfriend moved in so that there were three unrelated persons living in Mrs. Z's spacious home. Since Mrs. Z was incontinent of urine and feces, this also meant an unrelated male was changing her diapers and performing peri-neal care.Neither Mr. C nor his girlfriend had an income. Mr. C paid no rent, and he routinely cashed Mrs. Z's Social Security and pension checks to support the entire household. The agency considered this to be possible financial abuse.In addition, the agency nurse reported that Mr. C and his girlfriend frequently had parties, were reported to drink to excess at times, and sometimes seemed hung over in the morning. Neighbors had witnessed them smoking marijuana and the couple was believed to use cocaine–purchased, presumably, with Mrs. Z's funds.The documents designating Mr. C as proxy and power of attorney were reviewed by the home's social worker. They had been signed and witnessed several years earlier. There was no way to determine Mrs. Z's mental capacity at that time. The social worker also observed the “family” interacting during a visit. Mrs. Z did not appear to exhibit fear when she was around Mr. C or his girlfriend.When Mr. C was interviewed, he used an expletive, calling the hospital social worker nosy. He also described the hospital as “a filthy hole where they gave [Mrs. Z] diarrhea” but expressed no concerns about care at the nursing home.Mr. C said he considered Mrs. Z “his mom” and had promised Mrs. Z's daughter that he would take care of her mother at home until Mrs. Z died. The ethics committee held a meeting and a discharge date was set.DiscussionThis case certainly never would have appeared before the ethics committee if there had not been a clash of cultures between the medical establishment and the caregivers. Had the proxy been wealthier, been better educated, and led a more “socially acceptable” lifestyle, I doubt anyone would have questioned his decisions.Race and ethnicity also frequently raise barriers between those evaluating the safety of a discharge and caregivers in the community. These same barriers undoubtedly reinforced the proxy's suspicion of the medical institutions in general and of the hospital social worker in particular. Clearly, the patient had been well cared for at home in the past. Her skin was intact. There was no evidence of medical neglect. She was well nourished. She was free of bruises and scars. There was no evidence of verbal abuse, and the patient seemed comfortable with the caregiver. The nursing home was able to step back to evaluate the patient rather than to simply react to the proxy.Decisions regarding nursing home placement and home care sit on the borderline between medical and financial decision making. Ethically, a health care proxy is considered the voice of the patient. Legally, a power of attorney authorizes an agent to take financial actions on behalf of the signing individual. In this case, Mr. C served as both. Thus, he had legal authority and the ethical right to make decisions for his clearly incapacitated “mom.”Just as we do not let actively suicidal patients make decisions for themselves, we should not allow a proxy to make medical decisions whose intent is to harm the patient. This is not to say, however, that many proxies won't make valid, but stupid, decisions whose ultimate effect harms the patient. But the very essence of free choice is to allow some bad choices (indeed some very bad choices) to be made. After all, patients themselves frequently make bad decisions.In this case, the ethical issue was not whether Mr. C was making a bad decision in choosing to take a patient with advanced dementia out of the nursing home; rather, it was whether he had bad intentions in so doing that would, at least ethically, invalidate the proxy designation. But there was no evidence to support that.While there was no reason to believe that Mrs. Z would even know or care that she was at home, there was also little reason to suspect any immediate harm would come to her there. Certainly there is a risk associated with caregivers who at times drink to excess and might use illegal drugs. Likewise, institutionalization was not without risks. It had already produced bruises and a nosocomial infection.Obviously, Mr. C and his girlfriend would also benefit from this decision. Without Mrs. Z, they would be without a home or income. But the overall cost to Mrs. Z was undoubtedly less than what an agency would have charged for two 24-hour live-in aides. And that isn't really the point. After all, many proxies receive benefits from their decisions, even if only the gain of self-satisfaction. Since proxies generally are individuals who the patient has trusted and loved, there is no reason to think that benefit to the proxy would upset the patient. Only a clear and convincing demonstration of direct, intentional harm should invalidate the decision of a capacitated proxy.This column runs every other month. If you have questions related to this column or would like to submit cases for possible discussion, please e-mail us at [email protected]. JEFFERY. NICHOLS is president of the New York Medical Directors Association. He also is cofounder of the New York Long-Term Care Ethics Network and is a long-time member of AMDA's Ethics Committee. The views expressed in the Medical Ethics column are those of the writer. The CaseMrs. Z, a 90-year-old widow with advanced dementia, was admitted from Hospital A to a nursing home's NF dementia unit. But on admission, her health care proxy insisted that she be transferred to the skilled nursing facility subacute unit for rehabilitation before returning to her home.“I wasn't really planning for her to ever be in a nursing home, but the hospital doctors said she could be back walking with a walker with a couple days of rehab,” her health care proxy said. He presented papers that appeared valid, designating him with both her power of attorney and durable power of attorney for health care (health care proxy or agent).Mrs. Z had been admitted to the hospital with urosepsis and had received 2 weeks of intravenous antibiotics followed by a week of oral metronidazole and intravenous fluids for her subsequent Clostridium difficile diarrhea. She had been stable at home for the previous 3 years on no medications except thyroid replacement, acetaminophen for her arthritic knees, and a monthly vitamin B12 injection.Because the patient had been well known to the visiting nurse who gave the injections, the nurse was able to confirm that Mrs. Z had been walking inside her own home with a walker until the day before hospital admission. But the nurse also warned that the home health agency might not accept Mrs. Z back because its social worker found her living situation “unsafe.”Mrs. Z was transferred to the subacute unit. Before the nursing home's social worker could visit the patient or meet with the family, the hospital's social worker called to insist that “under no circumstances” should Mrs. Z be discharged home. She described the proxy as abusive and dangerous because he had threatened and cursed at Mrs. Z in the hospital.Only after careful questioning was it made clear that the person who had been threatened and cursed at was the hospital's social worker, who was unable to describe any negative behavior by the proxy toward Mrs. Z. The social worker asserted that the proxy was financially exploiting the patient, and that the entire home situation was “unhealthy.”Mrs. Z was a charming, white-haired lady whose speech was limited to saying “yes” and babbling, but she had a lovely, sunny smile. She had multiple recent ecchymoses at venipuncture sites and others in the pattern of fingers on both upper arms, apparently where she had been transferred roughly in the hospital, but otherwise seemed well. Her laboratory tests were normal with excellent nutritional parameters. She responded well to the physical therapists, and within 2 weeks she was using her walker with supervision. Mrs. Z's proxy proposed discharge with home care.On the surface, nothing about this discharge seemed dangerous. The resident was returning to her own home in the care of her legally designated representative, who wanted to take care of her and had previously done so. Nevertheless, when multiple warnings from professionals suggested icebergs in the water, caution seemed advised. From the day of admission, the home began its own assessment to determine the safety of discharge.First, the home care agency was called to ascertain its concerns, which were multiple. The agency was concerned because Mr. C, the proxy, was not a blood relative. He had been Mrs. Z's daughter's boyfriend and was living with the two of them in Mrs. Z's apartment when the daughter developed ovarian cancer and died.After some time, a new girlfriend moved in so that there were three unrelated persons living in Mrs. Z's spacious home. Since Mrs. Z was incontinent of urine and feces, this also meant an unrelated male was changing her diapers and performing peri-neal care.Neither Mr. C nor his girlfriend had an income. Mr. C paid no rent, and he routinely cashed Mrs. Z's Social Security and pension checks to support the entire household. The agency considered this to be possible financial abuse.In addition, the agency nurse reported that Mr. C and his girlfriend frequently had parties, were reported to drink to excess at times, and sometimes seemed hung over in the morning. Neighbors had witnessed them smoking marijuana and the couple was believed to use cocaine–purchased, presumably, with Mrs. Z's funds.The documents designating Mr. C as proxy and power of attorney were reviewed by the home's social worker. They had been signed and witnessed several years earlier. There was no way to determine Mrs. Z's mental capacity at that time. The social worker also observed the “family” interacting during a visit. Mrs. Z did not appear to exhibit fear when she was around Mr. C or his girlfriend.When Mr. C was interviewed, he used an expletive, calling the hospital social worker nosy. He also described the hospital as “a filthy hole where they gave [Mrs. Z] diarrhea” but expressed no concerns about care at the nursing home.Mr. C said he considered Mrs. Z “his mom” and had promised Mrs. Z's daughter that he would take care of her mother at home until Mrs. Z died. The ethics committee held a meeting and a discharge date was set. Mrs. Z, a 90-year-old widow with advanced dementia, was admitted from Hospital A to a nursing home's NF dementia unit. But on admission, her health care proxy insisted that she be transferred to the skilled nursing facility subacute unit for rehabilitation before returning to her home. “I wasn't really planning for her to ever be in a nursing home, but the hospital doctors said she could be back walking with a walker with a couple days of rehab,” her health care proxy said. He presented papers that appeared valid, designating him with both her power of attorney and durable power of attorney for health care (health care proxy or agent). Mrs. Z had been admitted to the hospital with urosepsis and had received 2 weeks of intravenous antibiotics followed by a week of oral metronidazole and intravenous fluids for her subsequent Clostridium difficile diarrhea. She had been stable at home for the previous 3 years on no medications except thyroid replacement, acetaminophen for her arthritic knees, and a monthly vitamin B12 injection. Because the patient had been well known to the visiting nurse who gave the injections, the nurse was able to confirm that Mrs. Z had been walking inside her own home with a walker until the day before hospital admission. But the nurse also warned that the home health agency might not accept Mrs. Z back because its social worker found her living situation “unsafe.” Mrs. Z was transferred to the subacute unit. Before the nursing home's social worker could visit the patient or meet with the family, the hospital's social worker called to insist that “under no circumstances” should Mrs. Z be discharged home. She described the proxy as abusive and dangerous because he had threatened and cursed at Mrs. Z in the hospital. Only after careful questioning was it made clear that the person who had been threatened and cursed at was the hospital's social worker, who was unable to describe any negative behavior by the proxy toward Mrs. Z. The social worker asserted that the proxy was financially exploiting the patient, and that the entire home situation was “unhealthy.” Mrs. Z was a charming, white-haired lady whose speech was limited to saying “yes” and babbling, but she had a lovely, sunny smile. She had multiple recent ecchymoses at venipuncture sites and others in the pattern of fingers on both upper arms, apparently where she had been transferred roughly in the hospital, but otherwise seemed well. Her laboratory tests were normal with excellent nutritional parameters. She responded well to the physical therapists, and within 2 weeks she was using her walker with supervision. Mrs. Z's proxy proposed discharge with home care. On the surface, nothing about this discharge seemed dangerous. The resident was returning to her own home in the care of her legally designated representative, who wanted to take care of her and had previously done so. Nevertheless, when multiple warnings from professionals suggested icebergs in the water, caution seemed advised. From the day of admission, the home began its own assessment to determine the safety of discharge. First, the home care agency was called to ascertain its concerns, which were multiple. The agency was concerned because Mr. C, the proxy, was not a blood relative. He had been Mrs. Z's daughter's boyfriend and was living with the two of them in Mrs. Z's apartment when the daughter developed ovarian cancer and died. After some time, a new girlfriend moved in so that there were three unrelated persons living in Mrs. Z's spacious home. Since Mrs. Z was incontinent of urine and feces, this also meant an unrelated male was changing her diapers and performing peri-neal care. Neither Mr. C nor his girlfriend had an income. Mr. C paid no rent, and he routinely cashed Mrs. Z's Social Security and pension checks to support the entire household. The agency considered this to be possible financial abuse. In addition, the agency nurse reported that Mr. C and his girlfriend frequently had parties, were reported to drink to excess at times, and sometimes seemed hung over in the morning. Neighbors had witnessed them smoking marijuana and the couple was believed to use cocaine–purchased, presumably, with Mrs. Z's funds. The documents designating Mr. C as proxy and power of attorney were reviewed by the home's social worker. They had been signed and witnessed several years earlier. There was no way to determine Mrs. Z's mental capacity at that time. The social worker also observed the “family” interacting during a visit. Mrs. Z did not appear to exhibit fear when she was around Mr. C or his girlfriend. When Mr. C was interviewed, he used an expletive, calling the hospital social worker nosy. He also described the hospital as “a filthy hole where they gave [Mrs. Z] diarrhea” but expressed no concerns about care at the nursing home. Mr. C said he considered Mrs. Z “his mom” and had promised Mrs. Z's daughter that he would take care of her mother at home until Mrs. Z died. The ethics committee held a meeting and a discharge date was set. DiscussionThis case certainly never would have appeared before the ethics committee if there had not been a clash of cultures between the medical establishment and the caregivers. Had the proxy been wealthier, been better educated, and led a more “socially acceptable” lifestyle, I doubt anyone would have questioned his decisions.Race and ethnicity also frequently raise barriers between those evaluating the safety of a discharge and caregivers in the community. These same barriers undoubtedly reinforced the proxy's suspicion of the medical institutions in general and of the hospital social worker in particular. Clearly, the patient had been well cared for at home in the past. Her skin was intact. There was no evidence of medical neglect. She was well nourished. She was free of bruises and scars. There was no evidence of verbal abuse, and the patient seemed comfortable with the caregiver. The nursing home was able to step back to evaluate the patient rather than to simply react to the proxy.Decisions regarding nursing home placement and home care sit on the borderline between medical and financial decision making. Ethically, a health care proxy is considered the voice of the patient. Legally, a power of attorney authorizes an agent to take financial actions on behalf of the signing individual. In this case, Mr. C served as both. Thus, he had legal authority and the ethical right to make decisions for his clearly incapacitated “mom.”Just as we do not let actively suicidal patients make decisions for themselves, we should not allow a proxy to make medical decisions whose intent is to harm the patient. This is not to say, however, that many proxies won't make valid, but stupid, decisions whose ultimate effect harms the patient. But the very essence of free choice is to allow some bad choices (indeed some very bad choices) to be made. After all, patients themselves frequently make bad decisions.In this case, the ethical issue was not whether Mr. C was making a bad decision in choosing to take a patient with advanced dementia out of the nursing home; rather, it was whether he had bad intentions in so doing that would, at least ethically, invalidate the proxy designation. But there was no evidence to support that.While there was no reason to believe that Mrs. Z would even know or care that she was at home, there was also little reason to suspect any immediate harm would come to her there. Certainly there is a risk associated with caregivers who at times drink to excess and might use illegal drugs. Likewise, institutionalization was not without risks. It had already produced bruises and a nosocomial infection.Obviously, Mr. C and his girlfriend would also benefit from this decision. Without Mrs. Z, they would be without a home or income. But the overall cost to Mrs. Z was undoubtedly less than what an agency would have charged for two 24-hour live-in aides. And that isn't really the point. After all, many proxies receive benefits from their decisions, even if only the gain of self-satisfaction. Since proxies generally are individuals who the patient has trusted and loved, there is no reason to think that benefit to the proxy would upset the patient. Only a clear and convincing demonstration of direct, intentional harm should invalidate the decision of a capacitated proxy.This column runs every other month. If you have questions related to this column or would like to submit cases for possible discussion, please e-mail us at [email protected]. This case certainly never would have appeared before the ethics committee if there had not been a clash of cultures between the medical establishment and the caregivers. Had the proxy been wealthier, been better educated, and led a more “socially acceptable” lifestyle, I doubt anyone would have questioned his decisions. Race and ethnicity also frequently raise barriers between those evaluating the safety of a discharge and caregivers in the community. These same barriers undoubtedly reinforced the proxy's suspicion of the medical institutions in general and of the hospital social worker in particular. Clearly, the patient had been well cared for at home in the past. Her skin was intact. There was no evidence of medical neglect. She was well nourished. She was free of bruises and scars. There was no evidence of verbal abuse, and the patient seemed comfortable with the caregiver. The nursing home was able to step back to evaluate the patient rather than to simply react to the proxy. Decisions regarding nursing home placement and home care sit on the borderline between medical and financial decision making. Ethically, a health care proxy is considered the voice of the patient. Legally, a power of attorney authorizes an agent to take financial actions on behalf of the signing individual. In this case, Mr. C served as both. Thus, he had legal authority and the ethical right to make decisions for his clearly incapacitated “mom.” Just as we do not let actively suicidal patients make decisions for themselves, we should not allow a proxy to make medical decisions whose intent is to harm the patient. This is not to say, however, that many proxies won't make valid, but stupid, decisions whose ultimate effect harms the patient. But the very essence of free choice is to allow some bad choices (indeed some very bad choices) to be made. After all, patients themselves frequently make bad decisions. In this case, the ethical issue was not whether Mr. C was making a bad decision in choosing to take a patient with advanced dementia out of the nursing home; rather, it was whether he had bad intentions in so doing that would, at least ethically, invalidate the proxy designation. But there was no evidence to support that. While there was no reason to believe that Mrs. Z would even know or care that she was at home, there was also little reason to suspect any immediate harm would come to her there. Certainly there is a risk associated with caregivers who at times drink to excess and might use illegal drugs. Likewise, institutionalization was not without risks. It had already produced bruises and a nosocomial infection. Obviously, Mr. C and his girlfriend would also benefit from this decision. Without Mrs. Z, they would be without a home or income. But the overall cost to Mrs. Z was undoubtedly less than what an agency would have charged for two 24-hour live-in aides. And that isn't really the point. After all, many proxies receive benefits from their decisions, even if only the gain of self-satisfaction. Since proxies generally are individuals who the patient has trusted and loved, there is no reason to think that benefit to the proxy would upset the patient. Only a clear and convincing demonstration of direct, intentional harm should invalidate the decision of a capacitated proxy. This column runs every other month. If you have questions related to this column or would like to submit cases for possible discussion, please e-mail us at [email protected].