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Home health care, ethics, and the family
Ethics
Rev. Robert J. Marks, MDiv, MSLS, MSW, RNC
Home Health Care, Ethics, and the Family
Rev. Robert J. Marks, MDiv, MSLS, MSW, RNC, an ordained pastor of the Evangelical Lutheran Church in America and certified psychiatric nurse, is the executive director of Community Home Health Care in Greensburg, Pa. Address for correspondence: Joan Liaschenko, RN, PhD, Center for Bioethics and School of Nursing, University of Minnesota, Suite N504 Boynton, 410 Church St. SE, Minneapolis, MN 55455-0346, Email [email protected] Reprint orders: Mosby, Inc., 11830 Westline Industrial Dr., St. Louis, MO 631463318; phone (314) 453-4350; reprint no. 69/1/116265 doi:10.1067/mhc.2001.116265
76 ■
Home health care professionals understand that treating the “whole person” necessarily involves the patient’s family. The fact that family members are both unique individuals and members of a group adds a layer of complexity to home care, especially when we consider how families respond to the stress of illness. From my experience of more than 20 years in home care practice, I have found that many of the staff and agency’s ethical concerns involve family problems. Frequently, home care professionals enter the home to discover a long-standing history of difficult, stressful relationships between family members that are exacerbated by the stress of illness and the threat of dying. Many years ago, I read a paper, the source of which I no longer recall, that identified the various ways that families respond to illness. These responses included eight general patterns of functioning: • As the patient improves, the family improves. • As the patient declines, the family declines. • As patient declines, the family improves. • As the patient improves, the family declines. • As the family improves, the patient improves. • As the family declines, the patient declines. • As the family declines, the patient improves. • As the family improves, the patient declines. None of these responses is intrinsically problematic. They become issues when they limit problemsolving or hinder the actions necessary to deal with them. These patterns become ethical concerns when they become harmful to patients and family members. Several examples come to mind. For example, a patient and her family lived in a relatively new home in one area of their farm, but as the patient, a woman in her 80s, became ill, the family moved her to the original farmhouse for unknown reasons. This house had electricity but no running water. A large hole in the living room floor looked straight down to the basement. The walls around the door
Home Care Provider
also had holes. A coal furnace provided some protection from the cold, but a bucket substituted for a toilet, and the patient’s catheter bag was lying in an old enamel washbasin. In this rural area, the board of health and the township’s sole policeman were the same. Both the home care professional and the officer agreed the situation was unacceptable, and after they spoke with the family, the patient was moved back to the house where they lived. Sometimes harm comes to a family through a person who seems forced to provide care. Often these situations involve a woman caring either for her mother or mother-in-law. For example, one patient, although she had five sons, became the sole responsibility of one daughter-in-law. During one home care visit, the daughter-in-law was very distraught, crying and complaining bitterly that she had no help from the rest of the family. A family meeting was arranged in which the home care professional pointed out the unfair burden to the one daughter-in-law, and the five sons were asked to set up a schedule to provide care for their mother or to consider paying the daughter-in-law for her work. In this situation, the sons rallied to care for their mother, but such efforts on the part of providers are not always successful. In another situation, a mother, her son (an only child), and her daughter-in-law lived in the same house, where the latter provided all the care to her mother-in-law. Although the daughter-in-law felt abused in this arrangement, some evidence suggested she had been in a long-term abusive relationship with her husband. The home care professional met with the daughter-in-law and the son separately to understand the situation from each perspective. Although the son saw no problem with the current arrangement, the daughter-in-law did but was afraid to challenge it for fear of incurring more abuse. At that time, few women’s shelters or support groups were available in the area. Like in
many similar situations, the presence of the home health agency lessened the harm to the daughter-in-law by supporting her in the care of her mother-in-law. Although the desire arises to protect people who are in abusive situations, sometimes an external intervention may exacerbate an already impaired situation. In other family situations, children may never have left their parents’ home. In some cases, the child is now an adult but remains mentally or physically handicapped; in others, however, the reasons for remaining are less obvious. Regardless of the reason, the “nest” never “emptied,” and the parent, now a patient, has to deal with his or her own health care in addition to the adult child’s. In many cases, the care of these children presents formidable challenges to the parents. Another challenge to home health care staff is the family that promises to care for its member but then is unwilling, or unable to do so. Staff may find patients who are not receiving adequate nutrition or proper medication or who are being left alone when they shouldn’t. Ethically, we must respond to poor care, and legally, we are required to report the family to the local area agency on aging. The agency then investigates for neglect and abuse and takes appropriate action, including making recommendations for the patient’s care. Even as home care professionals must be aware of the complex issues that can operate in families, we cannot always act as if we are expecting the worst to happen. One of the most important professional obligations, including ethical obligations in admitting a patient to home care, is a thorough assessment not only of the physical and behavioral condition of the patient but also family dynamics. Properly assessing the family situation and the patient’s physical condition when services begin helps ascertain possible complications, particularly if long-standing behavioral and relationship difficulties exist. I have found the following assessment tools useful in working with families in home care. In Rating Scales in Mental Health, Drs. Martha Sajatovic and Luis Ramirez cover a number of assessment tools rele-
vant to this discussion. One tool, the Burden Interview,1 developed by S.H. Zarit, K.E. Reever, and J. Bach-Peterson, is a 22-item scale that measures feelings of burden experienced by individuals caring for an elderly person with dementia. This tool is a nonthreatening way to identify potential and actual problems in the home and is appropriate for any family member providing care. The questions may be revised and supplemented by home health staff to identify possible and preventable family problems. Such information may help the staff respond to difficult situations in the most ethical way possible. A second assessment tool that may be helpful is the Lehman Quality of Life Interview.2 This tool requires more time than the Burden Interview because it involves a faceto-face interview and relies on patient self-reports in several areas, including living situation; family and other social relations; school, work, and leisure activities; finances; safety and legal problems; health; religion; and neighborhood. This tool also may be adapted for use by the family. Ethically, we are bound to anticipate and react to situations that interfere with optimal health care. Assessment is a critical feature of health care work, regardless of discipline. Because the family is so significant in home care, their assessment is as important as that of the patient. Just as with an individual, families can be influenced by emotional, financial, and social factors beyond their control, and these matters can lead to situations of ethical concern. Ethics and vision go hand in hand; with proper assessment and insight, we may be better prepared to assist patients and families with their immediate concerns and possibly be the impetus for positive changes in their dynamics. References 1. Zarit SH, KE Reever, J Bach-Peterson. Burden interview. In: Sajatovic M, Ramirez L, editors. Rating scales in mental health. Hudson (OH): Lexi-Comp; 2001. p. 334. 2. Lehman A. Lehman quality of life interview. In: Sajatovic M, Ramirez L, editors. Rating scales in mental health. Hudson (OH): Lexi-Comp; 2001. p. 228.
June 2001 ■ 77
Rev. Robert J. Marks, MDiv, MSLS, MSW, RNC
Home Health Care, Ethics, and the Family
Rev. Robert J. Marks, MDiv, MSLS, MSW, RNC, an ordained pastor of the Evangelical Lutheran Church in America and certified psychiatric nurse, is the executive director of Community Home Health Care in Greensburg, Pa. Address for correspondence: Joan Liaschenko, RN, PhD, Center for Bioethics and School of Nursing, University of Minnesota, Suite N504 Boynton, 410 Church St. SE, Minneapolis, MN 55455-0346, Email [email protected] Reprint orders: Mosby, Inc., 11830 Westline Industrial Dr., St. Louis, MO 631463318; phone (314) 453-4350; reprint no. 69/1/116265 doi:10.1067/mhc.2001.116265
76 ■
Home health care professionals understand that treating the “whole person” necessarily involves the patient’s family. The fact that family members are both unique individuals and members of a group adds a layer of complexity to home care, especially when we consider how families respond to the stress of illness. From my experience of more than 20 years in home care practice, I have found that many of the staff and agency’s ethical concerns involve family problems. Frequently, home care professionals enter the home to discover a long-standing history of difficult, stressful relationships between family members that are exacerbated by the stress of illness and the threat of dying. Many years ago, I read a paper, the source of which I no longer recall, that identified the various ways that families respond to illness. These responses included eight general patterns of functioning: • As the patient improves, the family improves. • As the patient declines, the family declines. • As patient declines, the family improves. • As the patient improves, the family declines. • As the family improves, the patient improves. • As the family declines, the patient declines. • As the family declines, the patient improves. • As the family improves, the patient declines. None of these responses is intrinsically problematic. They become issues when they limit problemsolving or hinder the actions necessary to deal with them. These patterns become ethical concerns when they become harmful to patients and family members. Several examples come to mind. For example, a patient and her family lived in a relatively new home in one area of their farm, but as the patient, a woman in her 80s, became ill, the family moved her to the original farmhouse for unknown reasons. This house had electricity but no running water. A large hole in the living room floor looked straight down to the basement. The walls around the door
Home Care Provider
also had holes. A coal furnace provided some protection from the cold, but a bucket substituted for a toilet, and the patient’s catheter bag was lying in an old enamel washbasin. In this rural area, the board of health and the township’s sole policeman were the same. Both the home care professional and the officer agreed the situation was unacceptable, and after they spoke with the family, the patient was moved back to the house where they lived. Sometimes harm comes to a family through a person who seems forced to provide care. Often these situations involve a woman caring either for her mother or mother-in-law. For example, one patient, although she had five sons, became the sole responsibility of one daughter-in-law. During one home care visit, the daughter-in-law was very distraught, crying and complaining bitterly that she had no help from the rest of the family. A family meeting was arranged in which the home care professional pointed out the unfair burden to the one daughter-in-law, and the five sons were asked to set up a schedule to provide care for their mother or to consider paying the daughter-in-law for her work. In this situation, the sons rallied to care for their mother, but such efforts on the part of providers are not always successful. In another situation, a mother, her son (an only child), and her daughter-in-law lived in the same house, where the latter provided all the care to her mother-in-law. Although the daughter-in-law felt abused in this arrangement, some evidence suggested she had been in a long-term abusive relationship with her husband. The home care professional met with the daughter-in-law and the son separately to understand the situation from each perspective. Although the son saw no problem with the current arrangement, the daughter-in-law did but was afraid to challenge it for fear of incurring more abuse. At that time, few women’s shelters or support groups were available in the area. Like in
many similar situations, the presence of the home health agency lessened the harm to the daughter-in-law by supporting her in the care of her mother-in-law. Although the desire arises to protect people who are in abusive situations, sometimes an external intervention may exacerbate an already impaired situation. In other family situations, children may never have left their parents’ home. In some cases, the child is now an adult but remains mentally or physically handicapped; in others, however, the reasons for remaining are less obvious. Regardless of the reason, the “nest” never “emptied,” and the parent, now a patient, has to deal with his or her own health care in addition to the adult child’s. In many cases, the care of these children presents formidable challenges to the parents. Another challenge to home health care staff is the family that promises to care for its member but then is unwilling, or unable to do so. Staff may find patients who are not receiving adequate nutrition or proper medication or who are being left alone when they shouldn’t. Ethically, we must respond to poor care, and legally, we are required to report the family to the local area agency on aging. The agency then investigates for neglect and abuse and takes appropriate action, including making recommendations for the patient’s care. Even as home care professionals must be aware of the complex issues that can operate in families, we cannot always act as if we are expecting the worst to happen. One of the most important professional obligations, including ethical obligations in admitting a patient to home care, is a thorough assessment not only of the physical and behavioral condition of the patient but also family dynamics. Properly assessing the family situation and the patient’s physical condition when services begin helps ascertain possible complications, particularly if long-standing behavioral and relationship difficulties exist. I have found the following assessment tools useful in working with families in home care. In Rating Scales in Mental Health, Drs. Martha Sajatovic and Luis Ramirez cover a number of assessment tools rele-
vant to this discussion. One tool, the Burden Interview,1 developed by S.H. Zarit, K.E. Reever, and J. Bach-Peterson, is a 22-item scale that measures feelings of burden experienced by individuals caring for an elderly person with dementia. This tool is a nonthreatening way to identify potential and actual problems in the home and is appropriate for any family member providing care. The questions may be revised and supplemented by home health staff to identify possible and preventable family problems. Such information may help the staff respond to difficult situations in the most ethical way possible. A second assessment tool that may be helpful is the Lehman Quality of Life Interview.2 This tool requires more time than the Burden Interview because it involves a faceto-face interview and relies on patient self-reports in several areas, including living situation; family and other social relations; school, work, and leisure activities; finances; safety and legal problems; health; religion; and neighborhood. This tool also may be adapted for use by the family. Ethically, we are bound to anticipate and react to situations that interfere with optimal health care. Assessment is a critical feature of health care work, regardless of discipline. Because the family is so significant in home care, their assessment is as important as that of the patient. Just as with an individual, families can be influenced by emotional, financial, and social factors beyond their control, and these matters can lead to situations of ethical concern. Ethics and vision go hand in hand; with proper assessment and insight, we may be better prepared to assist patients and families with their immediate concerns and possibly be the impetus for positive changes in their dynamics. References 1. Zarit SH, KE Reever, J Bach-Peterson. Burden interview. In: Sajatovic M, Ramirez L, editors. Rating scales in mental health. Hudson (OH): Lexi-Comp; 2001. p. 334. 2. Lehman A. Lehman quality of life interview. In: Sajatovic M, Ramirez L, editors. Rating scales in mental health. Hudson (OH): Lexi-Comp; 2001. p. 228.
June 2001 ■ 77