Including caregivers in patient care is an ethical imperative

Ms. Stout is a 58-year-old divorced mother of two. Her eldest son, Paul, aged 35, has cystic fibrosis and is the recipient of a lung transplant. He has several developmental delays, and his comprehension of medicolegal documents becomes quite limited when he is medically ill and on narcotics. His outpatient medical team is aware of this and includes his mother in all treatment decisions.

However, in the hospital, the medical teams do not appreciate his limitations. In the inpatient hospital setting, he does not retain information presented to him. They question his mother’s continual presence and see her as "overinvolved and enmeshed with her adult son." Ms. Stout says that she has to fight with each new physician team to get them to understand that they need to involve her in all her son’s health care decisions. The younger male physicians, especially, identify with Paul.

Paul presents as a well-adjusted young man. He is agreeable, open, and friendly with the staff. Paul has limited social contacts outside of the hospital. Because of his lengthy involvement in the hospital care system, he is comfortable in the hospital and especially enjoys his interaction with the female nurses. He understands basic procedures because they have been repeated so many times. However, he does not understand his complex health care needs. Unless his comprehension is specifically tested, his deficits go unrecognized.

His mother knows the details of his history and is a better resource than the chart. She insists on being present at all times, despite the demands of her other commitments. Each time her son is admitted, she faces scrutiny, and repeatedly has to explain herself and her son’s limitations to each new physician. She finds this situation exhausting and humiliating. She does not understand why her presence cannot be accepted as helpful.

The toll of caregiving

Family caregivers face many physical, emotional, and financial demands that make them vulnerable to stress-related conditions, both physical and psychological. Caregiving affects caregivers’ health, which, in turn, affects their ability to provide care. The Caregiver Health Effects Study demonstrated a strong link between caregiving and mortality risk, finding that elderly caregivers supporting disabled spouses at home were 63% more likely to die within 4 years than noncaregiving elderly spouses (JAMA 1999;282:2215-9). In addition, family caregivers often lack the time and energy to prepare their own meals, exercise, or engage in their own preventive medical care. Physicians must stress the importance of caregiver self-care for the benefit of both the caregiver and the patient, and identify appropriate sources of community support services, such as home health aides, respite, or adult day care.

In 2008, according to Suzanne Mintz, a cofounder of the National Family Caregivers Association, the estimated market value of the family caregivers’ services was $375 billion annually. Almost one-third of the U.S. population provides care for a chronically ill, disabled, or aged family member or friend during any given year and spends an average of 20 hours per week providing care for loved ones. Two-thirds of caregivers are women, and 13% of family caregivers are providing 40 hours of care a week or more.

The American Psychological Association has a "Caregiver Briefcase." The briefcase contains caregiving facts; a practice section with common caregiver problems and interventions; and sections on research, education, and advocacy. The website and its contents are useful for family members as well as professionals.

In addition, the American Psychological Association offers ways for family members to integrate into health care teams. For example, electronic medical records can allow family members access to portions such as the patient’s problem and medication lists and most recent laboratory findings. Family caregivers can provide ongoing, real-time observations about the patient through the portal, as well as share information about what it is like to be a family caregiver. Those secure messages become part of the patient’s permanent medical record.

Shifting patient decision making to family members is a delicate negotiation between the patient’s ability to make independent decisions and the family’s desire to protect the patient from potentially poor decisions. At critical times, the family has to step up and assume decision-making responsibility for the patient.

To help physicians understand the ethics of this process, the American College of Physicians offers guidelines to help the physician know how best to collaborate with the patient and the caregiver (J. Gen. Intern. Med. 2010;25:255-60). These guidelines are endorsed by 10 medical professional societies, including the Society of General Internal Medicine, the American Academy of Neurology, and the American Academy of Hospice and Palliative Medicine.

Ethical guidelines for collaboration

When working with patients, making sure that six factors are met will help us do a better job of ensuring that the relationship with caregivers is productive for all three parties involved. Here is a listing:

• Respect the patient’s dignity, rights, and values in all patient-physician-caregiver interactions.

• Recognize that physician accessibility and excellent communication are fundamental to supporting the patient and family caregiver.

• Recognize the value of family caregivers as a source of continuity regarding the patient’s medical and psychosocial history.

• Facilitate end of life adjustments for the family.

• Ensure appropriate boundaries when the caregiver is a health care professional.

• Ensure the caregiver receives appropriate support, referrals, and services.

Our failure to use patient and family-centered care (PFCC) is tied to attitudinal, educational, and organizational barriers. The first attitudinal barrier is the expectation that families will be unreasonable. The second is that families will compromise confidentiality. The third is that physicians are largely unaware of research on the benefits of PFCC. Finally, physicians believe that PFCC is time consuming and costs too much.

Educational barriers include the lack of skills needed for collaboration among professionals, administrators, patients, and families.

Organizational barriers that get in the way of PFCC are the lack of guiding vision, the top-down approach with insufficient effort to build staff commitment; grassroots effort that lacks leadership, commitment, and support; scarce fiscal resources and competing priorities; and the absence of a funded coordinator.

Psychiatric illnesses are chronic medical illnesses. As more people have experiences as patients and caregivers, the pressure to involve family members such as Ms. Stout increases. Where does the resistance to involving family members in patient care come from? There is an unfounded, unspoken fear on the part of health professionals that families want something that the health care provider cannot guarantee – that their relative "will get well and everything will be fine." Health care providers might limit what they say to family members in order "not to upset them." If the family members perceive that they are being brushed off and dismissed, they can develop feelings of apprehension. A small upset or misunderstanding can then unleash repressed feelings, resulting in family members lashing out. When health care teams include the family and develop collaborative relationships with families, the likelihood of this kind of conflict is reduced.

Resistance also comes from the perception that family involvement is not necessary for patient care. Many of the consequences of isolating patients from their family are invisible, such as relationship strain, role changes, and caregiver burden. The reality is that, for patients such as Ms. Stout’s son, his mother’s involvement helps his medical team do a better job of managing his care.

It is time that psychiatry, and specifically the American Psychiatric Association, develop ethical guidelines outlining how to work with families of patients with chronic psychiatric illness. At the very least, we should sign on with other medical specialties by endorsing the American College of Physicians’ ethical guidelines described above. We have lagged behind the rest of medicine by failing to address this important issue.

This column, "Families in Psychiatry," appears regularly in Clinical Psychiatry News, a publication of IMNG Medical Media. Dr. Heru is with the department of psychiatry at the University of Colorado at Denver, Aurora. She is editor of the recently published book, "Working With Families in Medical Settings: A Multidisciplinary Guide for Psychiatrists and Other Health Professionals" (New York: Routledge, 2013).

Ms. Stout is a 58-year-old divorced mother of two. Her eldest son, Paul, aged 35, has cystic fibrosis and is the recipient of a lung transplant. He has several developmental delays, and his comprehension of medicolegal documents becomes quite limited when he is medically ill and on narcotics. His outpatient medical team is aware of this and includes his mother in all treatment decisions.

However, in the hospital, the medical teams do not appreciate his limitations. In the inpatient hospital setting, he does not retain information presented to him. They question his mother’s continual presence and see her as "overinvolved and enmeshed with her adult son." Ms. Stout says that she has to fight with each new physician team to get them to understand that they need to involve her in all her son’s health care decisions. The younger male physicians, especially, identify with Paul.

Paul presents as a well-adjusted young man. He is agreeable, open, and friendly with the staff. Paul has limited social contacts outside of the hospital. Because of his lengthy involvement in the hospital care system, he is comfortable in the hospital and especially enjoys his interaction with the female nurses. He understands basic procedures because they have been repeated so many times. However, he does not understand his complex health care needs. Unless his comprehension is specifically tested, his deficits go unrecognized.

His mother knows the details of his history and is a better resource than the chart. She insists on being present at all times, despite the demands of her other commitments. Each time her son is admitted, she faces scrutiny, and repeatedly has to explain herself and her son’s limitations to each new physician. She finds this situation exhausting and humiliating. She does not understand why her presence cannot be accepted as helpful.

The toll of caregiving

Family caregivers face many physical, emotional, and financial demands that make them vulnerable to stress-related conditions, both physical and psychological. Caregiving affects caregivers’ health, which, in turn, affects their ability to provide care. The Caregiver Health Effects Study demonstrated a strong link between caregiving and mortality risk, finding that elderly caregivers supporting disabled spouses at home were 63% more likely to die within 4 years than noncaregiving elderly spouses (JAMA 1999;282:2215-9). In addition, family caregivers often lack the time and energy to prepare their own meals, exercise, or engage in their own preventive medical care. Physicians must stress the importance of caregiver self-care for the benefit of both the caregiver and the patient, and identify appropriate sources of community support services, such as home health aides, respite, or adult day care.

In 2008, according to Suzanne Mintz, a cofounder of the National Family Caregivers Association, the estimated market value of the family caregivers’ services was $375 billion annually. Almost one-third of the U.S. population provides care for a chronically ill, disabled, or aged family member or friend during any given year and spends an average of 20 hours per week providing care for loved ones. Two-thirds of caregivers are women, and 13% of family caregivers are providing 40 hours of care a week or more.

The American Psychological Association has a "Caregiver Briefcase." The briefcase contains caregiving facts; a practice section with common caregiver problems and interventions; and sections on research, education, and advocacy. The website and its contents are useful for family members as well as professionals.

In addition, the American Psychological Association offers ways for family members to integrate into health care teams. For example, electronic medical records can allow family members access to portions such as the patient’s problem and medication lists and most recent laboratory findings. Family caregivers can provide ongoing, real-time observations about the patient through the portal, as well as share information about what it is like to be a family caregiver. Those secure messages become part of the patient’s permanent medical record.

Shifting patient decision making to family members is a delicate negotiation between the patient’s ability to make independent decisions and the family’s desire to protect the patient from potentially poor decisions. At critical times, the family has to step up and assume decision-making responsibility for the patient.

To help physicians understand the ethics of this process, the American College of Physicians offers guidelines to help the physician know how best to collaborate with the patient and the caregiver (J. Gen. Intern. Med. 2010;25:255-60). These guidelines are endorsed by 10 medical professional societies, including the Society of General Internal Medicine, the American Academy of Neurology, and the American Academy of Hospice and Palliative Medicine.

Ethical guidelines for collaboration

When working with patients, making sure that six factors are met will help us do a better job of ensuring that the relationship with caregivers is productive for all three parties involved. Here is a listing:

• Respect the patient’s dignity, rights, and values in all patient-physician-caregiver interactions.

• Recognize that physician accessibility and excellent communication are fundamental to supporting the patient and family caregiver.

• Recognize the value of family caregivers as a source of continuity regarding the patient’s medical and psychosocial history.

• Facilitate end of life adjustments for the family.

• Ensure appropriate boundaries when the caregiver is a health care professional.

• Ensure the caregiver receives appropriate support, referrals, and services.

Our failure to use patient and family-centered care (PFCC) is tied to attitudinal, educational, and organizational barriers. The first attitudinal barrier is the expectation that families will be unreasonable. The second is that families will compromise confidentiality. The third is that physicians are largely unaware of research on the benefits of PFCC. Finally, physicians believe that PFCC is time consuming and costs too much.

Educational barriers include the lack of skills needed for collaboration among professionals, administrators, patients, and families.

Organizational barriers that get in the way of PFCC are the lack of guiding vision, the top-down approach with insufficient effort to build staff commitment; grassroots effort that lacks leadership, commitment, and support; scarce fiscal resources and competing priorities; and the absence of a funded coordinator.

Psychiatric illnesses are chronic medical illnesses. As more people have experiences as patients and caregivers, the pressure to involve family members such as Ms. Stout increases. Where does the resistance to involving family members in patient care come from? There is an unfounded, unspoken fear on the part of health professionals that families want something that the health care provider cannot guarantee – that their relative "will get well and everything will be fine." Health care providers might limit what they say to family members in order "not to upset them." If the family members perceive that they are being brushed off and dismissed, they can develop feelings of apprehension. A small upset or misunderstanding can then unleash repressed feelings, resulting in family members lashing out. When health care teams include the family and develop collaborative relationships with families, the likelihood of this kind of conflict is reduced.

Resistance also comes from the perception that family involvement is not necessary for patient care. Many of the consequences of isolating patients from their family are invisible, such as relationship strain, role changes, and caregiver burden. The reality is that, for patients such as Ms. Stout’s son, his mother’s involvement helps his medical team do a better job of managing his care.

It is time that psychiatry, and specifically the American Psychiatric Association, develop ethical guidelines outlining how to work with families of patients with chronic psychiatric illness. At the very least, we should sign on with other medical specialties by endorsing the American College of Physicians’ ethical guidelines described above. We have lagged behind the rest of medicine by failing to address this important issue.

This column, "Families in Psychiatry," appears regularly in Clinical Psychiatry News, a publication of IMNG Medical Media. Dr. Heru is with the department of psychiatry at the University of Colorado at Denver, Aurora. She is editor of the recently published book, "Working With Families in Medical Settings: A Multidisciplinary Guide for Psychiatrists and Other Health Professionals" (New York: Routledge, 2013).

Ms. Stout is a 58-year-old divorced mother of two. Her eldest son, Paul, aged 35, has cystic fibrosis and is the recipient of a lung transplant. He has several developmental delays, and his comprehension of medicolegal documents becomes quite limited when he is medically ill and on narcotics. His outpatient medical team is aware of this and includes his mother in all treatment decisions.

However, in the hospital, the medical teams do not appreciate his limitations. In the inpatient hospital setting, he does not retain information presented to him. They question his mother’s continual presence and see her as "overinvolved and enmeshed with her adult son." Ms. Stout says that she has to fight with each new physician team to get them to understand that they need to involve her in all her son’s health care decisions. The younger male physicians, especially, identify with Paul.

Paul presents as a well-adjusted young man. He is agreeable, open, and friendly with the staff. Paul has limited social contacts outside of the hospital. Because of his lengthy involvement in the hospital care system, he is comfortable in the hospital and especially enjoys his interaction with the female nurses. He understands basic procedures because they have been repeated so many times. However, he does not understand his complex health care needs. Unless his comprehension is specifically tested, his deficits go unrecognized.

His mother knows the details of his history and is a better resource than the chart. She insists on being present at all times, despite the demands of her other commitments. Each time her son is admitted, she faces scrutiny, and repeatedly has to explain herself and her son’s limitations to each new physician. She finds this situation exhausting and humiliating. She does not understand why her presence cannot be accepted as helpful.

The toll of caregiving

Family caregivers face many physical, emotional, and financial demands that make them vulnerable to stress-related conditions, both physical and psychological. Caregiving affects caregivers’ health, which, in turn, affects their ability to provide care. The Caregiver Health Effects Study demonstrated a strong link between caregiving and mortality risk, finding that elderly caregivers supporting disabled spouses at home were 63% more likely to die within 4 years than noncaregiving elderly spouses (JAMA 1999;282:2215-9). In addition, family caregivers often lack the time and energy to prepare their own meals, exercise, or engage in their own preventive medical care. Physicians must stress the importance of caregiver self-care for the benefit of both the caregiver and the patient, and identify appropriate sources of community support services, such as home health aides, respite, or adult day care.

In 2008, according to Suzanne Mintz, a cofounder of the National Family Caregivers Association, the estimated market value of the family caregivers’ services was $375 billion annually. Almost one-third of the U.S. population provides care for a chronically ill, disabled, or aged family member or friend during any given year and spends an average of 20 hours per week providing care for loved ones. Two-thirds of caregivers are women, and 13% of family caregivers are providing 40 hours of care a week or more.

The American Psychological Association has a "Caregiver Briefcase." The briefcase contains caregiving facts; a practice section with common caregiver problems and interventions; and sections on research, education, and advocacy. The website and its contents are useful for family members as well as professionals.

In addition, the American Psychological Association offers ways for family members to integrate into health care teams. For example, electronic medical records can allow family members access to portions such as the patient’s problem and medication lists and most recent laboratory findings. Family caregivers can provide ongoing, real-time observations about the patient through the portal, as well as share information about what it is like to be a family caregiver. Those secure messages become part of the patient’s permanent medical record.

Shifting patient decision making to family members is a delicate negotiation between the patient’s ability to make independent decisions and the family’s desire to protect the patient from potentially poor decisions. At critical times, the family has to step up and assume decision-making responsibility for the patient.

To help physicians understand the ethics of this process, the American College of Physicians offers guidelines to help the physician know how best to collaborate with the patient and the caregiver (J. Gen. Intern. Med. 2010;25:255-60). These guidelines are endorsed by 10 medical professional societies, including the Society of General Internal Medicine, the American Academy of Neurology, and the American Academy of Hospice and Palliative Medicine.

Ethical guidelines for collaboration

When working with patients, making sure that six factors are met will help us do a better job of ensuring that the relationship with caregivers is productive for all three parties involved. Here is a listing:

• Respect the patient’s dignity, rights, and values in all patient-physician-caregiver interactions.

• Recognize that physician accessibility and excellent communication are fundamental to supporting the patient and family caregiver.

• Recognize the value of family caregivers as a source of continuity regarding the patient’s medical and psychosocial history.

• Facilitate end of life adjustments for the family.

• Ensure appropriate boundaries when the caregiver is a health care professional.

• Ensure the caregiver receives appropriate support, referrals, and services.

Our failure to use patient and family-centered care (PFCC) is tied to attitudinal, educational, and organizational barriers. The first attitudinal barrier is the expectation that families will be unreasonable. The second is that families will compromise confidentiality. The third is that physicians are largely unaware of research on the benefits of PFCC. Finally, physicians believe that PFCC is time consuming and costs too much.

Educational barriers include the lack of skills needed for collaboration among professionals, administrators, patients, and families.

Organizational barriers that get in the way of PFCC are the lack of guiding vision, the top-down approach with insufficient effort to build staff commitment; grassroots effort that lacks leadership, commitment, and support; scarce fiscal resources and competing priorities; and the absence of a funded coordinator.

Psychiatric illnesses are chronic medical illnesses. As more people have experiences as patients and caregivers, the pressure to involve family members such as Ms. Stout increases. Where does the resistance to involving family members in patient care come from? There is an unfounded, unspoken fear on the part of health professionals that families want something that the health care provider cannot guarantee – that their relative "will get well and everything will be fine." Health care providers might limit what they say to family members in order "not to upset them." If the family members perceive that they are being brushed off and dismissed, they can develop feelings of apprehension. A small upset or misunderstanding can then unleash repressed feelings, resulting in family members lashing out. When health care teams include the family and develop collaborative relationships with families, the likelihood of this kind of conflict is reduced.

Resistance also comes from the perception that family involvement is not necessary for patient care. Many of the consequences of isolating patients from their family are invisible, such as relationship strain, role changes, and caregiver burden. The reality is that, for patients such as Ms. Stout’s son, his mother’s involvement helps his medical team do a better job of managing his care.

It is time that psychiatry, and specifically the American Psychiatric Association, develop ethical guidelines outlining how to work with families of patients with chronic psychiatric illness. At the very least, we should sign on with other medical specialties by endorsing the American College of Physicians’ ethical guidelines described above. We have lagged behind the rest of medicine by failing to address this important issue.

This column, "Families in Psychiatry," appears regularly in Clinical Psychiatry News, a publication of IMNG Medical Media. Dr. Heru is with the department of psychiatry at the University of Colorado at Denver, Aurora. She is editor of the recently published book, "Working With Families in Medical Settings: A Multidisciplinary Guide for Psychiatrists and Other Health Professionals" (New York: Routledge, 2013).