Piece Together Family Puzzles To Maximize Quality Care

Abstract

How families communicate and interact when an elderly member needs long-term care depends on their history and current relationships. When physicians and facility staff understand these factors, they can make it easier for everyone to adjust to a new living situation. They also get a better picture of the resident—the good, the bad, and the ugly—so they can provide appropriate, individualized care.“Families are the backbone of long-term care in this country—for better or worse,” said Paula Span, the author of the book “When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions” (New York: Springboard Press, 2009). She spent time with several families who were at the crossroads with aging parents. The book describes their struggles, fears, concerns, and experiences. The result is a candid look at what adult children and their parents go through as people age and make end-of-life choices.Understanding the family's background and issues is important, said Ms. Span in an interview. She noted that the vast majority of elderly Americans rely on families for caregiver help and support. “For a significant minority, it is a real threat to their own health and stability—especially when the elderly family member has dementia,” she said. “If you have money, you can hire help—caregivers, various types of therapists, geriatric care managers, and so on—and get what you need; but most people are going it alone, and it can be tough.”What's Up, Doctor?When families are looking for people to help them, they often think of the physician. Ms. Span explained, “People think the doctor will help them” with all kinds of problems—from treating ailments and making myriad care decisions to taking Dad's car away.However, she added, “when families talk to physicians, they often aren't satisfied because these practitioners aren't social workers or hospice nurses.” While physicians shouldn't try to wear these hats, they “should be conscious of what the major issues are and be able to refer families to people who can help.”Ms. Span suggested that the intake form at every medical practice or care setting should include a box asking if the patient is a caregiver to someone else, “so the physician knows that person may be under serious amounts of stress. Physicians need to aware of the burdensome task of caregiver and find out how they can help. Everyone benefits when caregivers can stay on the job.”It is important for physicians and others to realize that most families don't believe that their responsibilities end “just because their family member is in a facility.” Instead, “they are volunteering with activities, and they want to be included in care planning,” she said. “They still see themselves as being on the case, and they still can benefit from caregiver support and training.”A big role that families fill, said Ms. Span, is to be sources of information on details such as food preferences, allergies, medications, and other issues. However, “it may be asking too much to expect total honesty on admission. Families dealing with a behavioral issue or other problem are desperate for placement. Once the person is admitted and the family starts to feel secure, they are more likely to open up.”Ms. Span stressed the importance of a strong social work component. “The facility in my book has two social workers who work with families, and these professionals are very helpful,” she said.It is important for physicians and other practitioners, as well as facility staff, to help families feel less like they are going through things on their own. However, “it shouldn't be up to any one person to deal with issues such as a resident's propensity for angry outbursts,” said Ms Span. “Everyone can be involved—it is a systemic approach.”Physician as DetectiveDaniel Haimowitz, MD, CMD, a Pennsylvania-based medical director, agreed that input from a social worker can be invaluable. But he noted that physicians can learn much from their interactions with families, which can help them address fears and problems.“The family will tell you directly or indirectly when there is a problem or family issue,” he said. “They'll look stressed, tense, or nervous. They will say things like, ‘Mom has been a difficult person all her life. We never talked about what would happen if she got sick.’ If you're observant, you can pick up on family stress and anxiety almost immediately.”Don't expect a patient's current attitude or behavior to tell you everything, Dr. Haimowitz cautioned. “You can't make assumptions or just accept things at face value.” The physician can uncover some information while conducting the initial history and physical, said Dr. Haimowitz. “Some issues may come out here—such as a history of drinking, smoking, or drug abuse. Issues of physical, emotional, or sexual abuse may be a little more difficult to identify.”Unfortunately, even under the best of circumstances, families may not be willing to volunteer information about negatives. “You might have a situation where a demented patient punches someone, and the family [only] then tells you that the person has done it before,” said Dr. Haimowitz. “People may be hesitant to talk about negative things. They are ashamed or embarrassed, or they are afraid Mom or Dad will be discriminated against or asked to leave the facility.”The best predictor of future behavior is past behavior, said Daniel Bluestein, MD, CMD, a Virginia-based medical director. “By building an alliance with the family, you can gain insight into the patient's past.” Even when the family resists this alliance, said Dr. Bluestein, the physician can learn much from these individuals. “Watch for family members who are disengaged, difficult to talk to or reach, or estranged. A family that is overly involved also may suggest some red flags.”To get people to talk about negative issues, Dr. Haimowitz suggested presenting the discussion in a positive way. “Stress that you are going to use the information in ways that will enhance care planning and help protect their family member and other residents. Be nonjudgmental, and ask them about triggers to the problem and any strategies they have used to de-escalate the problem in the past,” he advised. “Communicate that you are not being judgmental or discriminatory. Emphasize that you need the information so that you can be prepared.”Listening, LearningWhen family members actually do open up, the physician should listen and let them talk. Their words may offer keys to a patient's history and issues, and talking may be cathartic for the family.However, Dr. Bluestein cautioned against trying to “fix the family.” He explained, “You don't want to destabilize the family or the situation. If the family needs help, the physician should refer them to a qualified professional such as a social worker or other behavioral expert.”Dr. Haimowitz agreed. “I see plenty of families who I wish I could help more. But they're not my patients, and I can only do so much. The best approach is to suggest support groups and other resources that can help them.”He stressed the need to remember that each family is unique. “Everyone is different. It can make a real difference when the physician talks to family members as individuals.”Dr. Bluestein added, “Building relationships with families is like establishing any relationship. It is important to make it clear that you are interested in their loved one getting the best possible care.”Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, Pa., and a communications consultant for AMDA and other organizations. How families communicate and interact when an elderly member needs long-term care depends on their history and current relationships. When physicians and facility staff understand these factors, they can make it easier for everyone to adjust to a new living situation. They also get a better picture of the resident—the good, the bad, and the ugly—so they can provide appropriate, individualized care. “Families are the backbone of long-term care in this country—for better or worse,” said Paula Span, the author of the book “When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions” (New York: Springboard Press, 2009). She spent time with several families who were at the crossroads with aging parents. The book describes their struggles, fears, concerns, and experiences. The result is a candid look at what adult children and their parents go through as people age and make end-of-life choices. Understanding the family's background and issues is important, said Ms. Span in an interview. She noted that the vast majority of elderly Americans rely on families for caregiver help and support. “For a significant minority, it is a real threat to their own health and stability—especially when the elderly family member has dementia,” she said. “If you have money, you can hire help—caregivers, various types of therapists, geriatric care managers, and so on—and get what you need; but most people are going it alone, and it can be tough.” What's Up, Doctor?When families are looking for people to help them, they often think of the physician. Ms. Span explained, “People think the doctor will help them” with all kinds of problems—from treating ailments and making myriad care decisions to taking Dad's car away.However, she added, “when families talk to physicians, they often aren't satisfied because these practitioners aren't social workers or hospice nurses.” While physicians shouldn't try to wear these hats, they “should be conscious of what the major issues are and be able to refer families to people who can help.”Ms. Span suggested that the intake form at every medical practice or care setting should include a box asking if the patient is a caregiver to someone else, “so the physician knows that person may be under serious amounts of stress. Physicians need to aware of the burdensome task of caregiver and find out how they can help. Everyone benefits when caregivers can stay on the job.”It is important for physicians and others to realize that most families don't believe that their responsibilities end “just because their family member is in a facility.” Instead, “they are volunteering with activities, and they want to be included in care planning,” she said. “They still see themselves as being on the case, and they still can benefit from caregiver support and training.”A big role that families fill, said Ms. Span, is to be sources of information on details such as food preferences, allergies, medications, and other issues. However, “it may be asking too much to expect total honesty on admission. Families dealing with a behavioral issue or other problem are desperate for placement. Once the person is admitted and the family starts to feel secure, they are more likely to open up.”Ms. Span stressed the importance of a strong social work component. “The facility in my book has two social workers who work with families, and these professionals are very helpful,” she said.It is important for physicians and other practitioners, as well as facility staff, to help families feel less like they are going through things on their own. However, “it shouldn't be up to any one person to deal with issues such as a resident's propensity for angry outbursts,” said Ms Span. “Everyone can be involved—it is a systemic approach.” When families are looking for people to help them, they often think of the physician. Ms. Span explained, “People think the doctor will help them” with all kinds of problems—from treating ailments and making myriad care decisions to taking Dad's car away. However, she added, “when families talk to physicians, they often aren't satisfied because these practitioners aren't social workers or hospice nurses.” While physicians shouldn't try to wear these hats, they “should be conscious of what the major issues are and be able to refer families to people who can help.” Ms. Span suggested that the intake form at every medical practice or care setting should include a box asking if the patient is a caregiver to someone else, “so the physician knows that person may be under serious amounts of stress. Physicians need to aware of the burdensome task of caregiver and find out how they can help. Everyone benefits when caregivers can stay on the job.” It is important for physicians and others to realize that most families don't believe that their responsibilities end “just because their family member is in a facility.” Instead, “they are volunteering with activities, and they want to be included in care planning,” she said. “They still see themselves as being on the case, and they still can benefit from caregiver support and training.” A big role that families fill, said Ms. Span, is to be sources of information on details such as food preferences, allergies, medications, and other issues. However, “it may be asking too much to expect total honesty on admission. Families dealing with a behavioral issue or other problem are desperate for placement. Once the person is admitted and the family starts to feel secure, they are more likely to open up.” Ms. Span stressed the importance of a strong social work component. “The facility in my book has two social workers who work with families, and these professionals are very helpful,” she said. It is important for physicians and other practitioners, as well as facility staff, to help families feel less like they are going through things on their own. However, “it shouldn't be up to any one person to deal with issues such as a resident's propensity for angry outbursts,” said Ms Span. “Everyone can be involved—it is a systemic approach.” Physician as DetectiveDaniel Haimowitz, MD, CMD, a Pennsylvania-based medical director, agreed that input from a social worker can be invaluable. But he noted that physicians can learn much from their interactions with families, which can help them address fears and problems.“The family will tell you directly or indirectly when there is a problem or family issue,” he said. “They'll look stressed, tense, or nervous. They will say things like, ‘Mom has been a difficult person all her life. We never talked about what would happen if she got sick.’ If you're observant, you can pick up on family stress and anxiety almost immediately.”Don't expect a patient's current attitude or behavior to tell you everything, Dr. Haimowitz cautioned. “You can't make assumptions or just accept things at face value.” The physician can uncover some information while conducting the initial history and physical, said Dr. Haimowitz. “Some issues may come out here—such as a history of drinking, smoking, or drug abuse. Issues of physical, emotional, or sexual abuse may be a little more difficult to identify.”Unfortunately, even under the best of circumstances, families may not be willing to volunteer information about negatives. “You might have a situation where a demented patient punches someone, and the family [only] then tells you that the person has done it before,” said Dr. Haimowitz. “People may be hesitant to talk about negative things. They are ashamed or embarrassed, or they are afraid Mom or Dad will be discriminated against or asked to leave the facility.”The best predictor of future behavior is past behavior, said Daniel Bluestein, MD, CMD, a Virginia-based medical director. “By building an alliance with the family, you can gain insight into the patient's past.” Even when the family resists this alliance, said Dr. Bluestein, the physician can learn much from these individuals. “Watch for family members who are disengaged, difficult to talk to or reach, or estranged. A family that is overly involved also may suggest some red flags.”To get people to talk about negative issues, Dr. Haimowitz suggested presenting the discussion in a positive way. “Stress that you are going to use the information in ways that will enhance care planning and help protect their family member and other residents. Be nonjudgmental, and ask them about triggers to the problem and any strategies they have used to de-escalate the problem in the past,” he advised. “Communicate that you are not being judgmental or discriminatory. Emphasize that you need the information so that you can be prepared.” Daniel Haimowitz, MD, CMD, a Pennsylvania-based medical director, agreed that input from a social worker can be invaluable. But he noted that physicians can learn much from their interactions with families, which can help them address fears and problems. “The family will tell you directly or indirectly when there is a problem or family issue,” he said. “They'll look stressed, tense, or nervous. They will say things like, ‘Mom has been a difficult person all her life. We never talked about what would happen if she got sick.’ If you're observant, you can pick up on family stress and anxiety almost immediately.” Don't expect a patient's current attitude or behavior to tell you everything, Dr. Haimowitz cautioned. “You can't make assumptions or just accept things at face value.” The physician can uncover some information while conducting the initial history and physical, said Dr. Haimowitz. “Some issues may come out here—such as a history of drinking, smoking, or drug abuse. Issues of physical, emotional, or sexual abuse may be a little more difficult to identify.” Unfortunately, even under the best of circumstances, families may not be willing to volunteer information about negatives. “You might have a situation where a demented patient punches someone, and the family [only] then tells you that the person has done it before,” said Dr. Haimowitz. “People may be hesitant to talk about negative things. They are ashamed or embarrassed, or they are afraid Mom or Dad will be discriminated against or asked to leave the facility.” The best predictor of future behavior is past behavior, said Daniel Bluestein, MD, CMD, a Virginia-based medical director. “By building an alliance with the family, you can gain insight into the patient's past.” Even when the family resists this alliance, said Dr. Bluestein, the physician can learn much from these individuals. “Watch for family members who are disengaged, difficult to talk to or reach, or estranged. A family that is overly involved also may suggest some red flags.” To get people to talk about negative issues, Dr. Haimowitz suggested presenting the discussion in a positive way. “Stress that you are going to use the information in ways that will enhance care planning and help protect their family member and other residents. Be nonjudgmental, and ask them about triggers to the problem and any strategies they have used to de-escalate the problem in the past,” he advised. “Communicate that you are not being judgmental or discriminatory. Emphasize that you need the information so that you can be prepared.” Listening, LearningWhen family members actually do open up, the physician should listen and let them talk. Their words may offer keys to a patient's history and issues, and talking may be cathartic for the family.However, Dr. Bluestein cautioned against trying to “fix the family.” He explained, “You don't want to destabilize the family or the situation. If the family needs help, the physician should refer them to a qualified professional such as a social worker or other behavioral expert.”Dr. Haimowitz agreed. “I see plenty of families who I wish I could help more. But they're not my patients, and I can only do so much. The best approach is to suggest support groups and other resources that can help them.”He stressed the need to remember that each family is unique. “Everyone is different. It can make a real difference when the physician talks to family members as individuals.”Dr. Bluestein added, “Building relationships with families is like establishing any relationship. It is important to make it clear that you are interested in their loved one getting the best possible care.”Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, Pa., and a communications consultant for AMDA and other organizations. When family members actually do open up, the physician should listen and let them talk. Their words may offer keys to a patient's history and issues, and talking may be cathartic for the family. However, Dr. Bluestein cautioned against trying to “fix the family.” He explained, “You don't want to destabilize the family or the situation. If the family needs help, the physician should refer them to a qualified professional such as a social worker or other behavioral expert.” Dr. Haimowitz agreed. “I see plenty of families who I wish I could help more. But they're not my patients, and I can only do so much. The best approach is to suggest support groups and other resources that can help them.” He stressed the need to remember that each family is unique. “Everyone is different. It can make a real difference when the physician talks to family members as individuals.” Dr. Bluestein added, “Building relationships with families is like establishing any relationship. It is important to make it clear that you are interested in their loved one getting the best possible care.” Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, Pa., and a communications consultant for AMDA and other organizations.