Advancing treatment while respecting privacy

While reading a recent article about Richard Fee, a 25-year-old college graduate who committed suicide in 2011, I couldn’t help wondering whether things might have turned out differently had his family – particularly his parents – had more to say about his psychiatric care.

Richard’s parents reportedly had a hard time accessing appropriate care for their son and suggested that his doctors’ adherence to privacy laws might have explained their behavior. Dr. Waldo M. Ellison, the psychiatrist who conducted Richard’s initial evaluation, "explained that federal privacy laws forbade any discussion of an adult patient, even with the patient’s father," the article said ("Drowned in a Stream of Prescriptions," New York Times, Feb. 2, 2013).

The Times article discussed Richard’s struggles with attention-deficit/hyperactivity diagnoses, his dark mood and growing paranoia, and his agitated, violent behavior.

Richard’s father, Rick Fee, reportedly tried to share details about his son’s behavior with the doctor but was met with resistance. "I can’t talk to you," Mr. Fee recalled Dr. Ellison telling him. "I can’t talk with you unless your son comes with you." Later in the article, however, Mr. Fee noted that Dr. Ellison "had spoken with him about his son for 45 minutes, then they scheduled an appointment for the entire family."

The Health Insurance Portability and Accountability Act (HIPPA) sets rules for the use of health information. The intent of the federal privacy law is to give patients more control over their care, but, unfortunately, the intent is often misunderstood as restricting to whom professionals can talk. What do federal privacy laws actually say about talking with family members?

The HIPAA Privacy Rule at 45 CFR 164.510(b) specifically permits covered entities to share information that is directly relevant to the involvement of a spouse, family members, friends, or other persons identified by a patient, in the patient’s care or payment for health care.

If the patient is present, or is otherwise available prior to the disclosure, and has the capacity to make health care decisions, the covered entity may discuss this information with the family and these other persons if the patient agrees or, when given the opportunity, does not object. The covered entity also may share relevant information with the family and these other persons if it can be reasonably inferred, based on professional judgment, that the patient does not object. Under these circumstances, for example:

• A physician may instruct a patient’s roommate about proper medicine dosage when she comes to pick up her friend from the hospital.

• A physician may discuss a patient’s treatment with the patient in the presence of a friend when the patient brings the friend to a medical appointment and asks if the friend can come into the room. Even when the patient is not present because of emergency circumstances or incapacity, a covered entity may share information with the person when, in exercising professional judgment, it determines that doing so would be in the best interest of the patient. See 45 CFR 164.510(b).

In light of those allowances:

• A surgeon may, if consistent with such professional judgment, inform a patient’s spouse who accompanied her husband to the emergency room that the patient has suffered a heart attack and provide periodic updates on the patients’ progress and prognosis.

• A doctor may, if consistent with such professional judgment, discuss an incapacitated patient’s condition with a family member over the phone. In addition, the privacy rule expressly permits a covered entity to use professional judgment and experience with common practice to make reasonable inferences about the patient’s best interests in allowing another person to act on behalf of the patient to pick up a filled prescription, medical supplies, X-rays, or other similar forms of protected health information.

For example, when a person comes to a pharmacy requesting to pick up a prescription on behalf of an individual, he identifies by name, a pharmacist, based on professional judgment and experience with common practice.

What to do if a patient objects

If a family member is urgently trying to reach you, it is most likely because the person has information she deems pertinent for the safe care of your patient. You can listen to anything they say. The privacy act is about protecting patient information, so that you may not tell them details of what the patient has told you in confidence, unless there are issues of safety or the possibility of harm to self or others.

Nonemergent situations allow time for the psychiatrist to educate the patient on the benefits of family involvement. As I have written previously, the literature is quite clear: Family involvement improves the outcome of many psychiatric illnesses (Am. J. Psychiatry 2006;163:962-8). It should be part of our informed consent process that we let patients know this. For example, we might want to say something like this: "In major depression, the literature shows that patient outcome is much better if family functioning is good. Let’s schedule a family consultation, one session, to assess the family functioning." Or we might say: "With bipolar disorder, when family members are knowledgeable about the signs and symptoms of relapse, the patient has a better outcome."

Patients might fear family involvement because they think the psychiatrist will divulge secrets or because the patient fears being attacked by angry family members. The patient should be reassured that the purpose of the meeting is to promote general treatment goals, such as maintaining optimal functioning with lowest medication doses, and to work on future treatment goals as a team.

When the psychiatrist lays out a clear plan for the meeting, the patient grasps the importance of having everyone on board. This is what we should tell patients: "At the family meeting we will review your family’s concerns and your concerns. Many family members need help understanding your illness, the role of medications, and how best to manage when, for example, you miss a dose of medications or have questions about how closely they need to monitor things.

"If you all agree on what is important and what is less important, things will go more smoothly for you. The main focus is to have a plan going forward of how we should work as a team to get you the best treatment possible, maintain your health, and prevent relapses."

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 Professions" (New York: Routledge, March 2013), and has been a member of the Association of Family Psychiatrists since 2002.

While reading a recent article about Richard Fee, a 25-year-old college graduate who committed suicide in 2011, I couldn’t help wondering whether things might have turned out differently had his family – particularly his parents – had more to say about his psychiatric care.

Richard’s parents reportedly had a hard time accessing appropriate care for their son and suggested that his doctors’ adherence to privacy laws might have explained their behavior. Dr. Waldo M. Ellison, the psychiatrist who conducted Richard’s initial evaluation, "explained that federal privacy laws forbade any discussion of an adult patient, even with the patient’s father," the article said ("Drowned in a Stream of Prescriptions," New York Times, Feb. 2, 2013).

The Times article discussed Richard’s struggles with attention-deficit/hyperactivity diagnoses, his dark mood and growing paranoia, and his agitated, violent behavior.

Richard’s father, Rick Fee, reportedly tried to share details about his son’s behavior with the doctor but was met with resistance. "I can’t talk to you," Mr. Fee recalled Dr. Ellison telling him. "I can’t talk with you unless your son comes with you." Later in the article, however, Mr. Fee noted that Dr. Ellison "had spoken with him about his son for 45 minutes, then they scheduled an appointment for the entire family."

The Health Insurance Portability and Accountability Act (HIPPA) sets rules for the use of health information. The intent of the federal privacy law is to give patients more control over their care, but, unfortunately, the intent is often misunderstood as restricting to whom professionals can talk. What do federal privacy laws actually say about talking with family members?

The HIPAA Privacy Rule at 45 CFR 164.510(b) specifically permits covered entities to share information that is directly relevant to the involvement of a spouse, family members, friends, or other persons identified by a patient, in the patient’s care or payment for health care.

If the patient is present, or is otherwise available prior to the disclosure, and has the capacity to make health care decisions, the covered entity may discuss this information with the family and these other persons if the patient agrees or, when given the opportunity, does not object. The covered entity also may share relevant information with the family and these other persons if it can be reasonably inferred, based on professional judgment, that the patient does not object. Under these circumstances, for example:

• A physician may instruct a patient’s roommate about proper medicine dosage when she comes to pick up her friend from the hospital.

• A physician may discuss a patient’s treatment with the patient in the presence of a friend when the patient brings the friend to a medical appointment and asks if the friend can come into the room. Even when the patient is not present because of emergency circumstances or incapacity, a covered entity may share information with the person when, in exercising professional judgment, it determines that doing so would be in the best interest of the patient. See 45 CFR 164.510(b).

In light of those allowances:

• A surgeon may, if consistent with such professional judgment, inform a patient’s spouse who accompanied her husband to the emergency room that the patient has suffered a heart attack and provide periodic updates on the patients’ progress and prognosis.

• A doctor may, if consistent with such professional judgment, discuss an incapacitated patient’s condition with a family member over the phone. In addition, the privacy rule expressly permits a covered entity to use professional judgment and experience with common practice to make reasonable inferences about the patient’s best interests in allowing another person to act on behalf of the patient to pick up a filled prescription, medical supplies, X-rays, or other similar forms of protected health information.

For example, when a person comes to a pharmacy requesting to pick up a prescription on behalf of an individual, he identifies by name, a pharmacist, based on professional judgment and experience with common practice.

What to do if a patient objects

If a family member is urgently trying to reach you, it is most likely because the person has information she deems pertinent for the safe care of your patient. You can listen to anything they say. The privacy act is about protecting patient information, so that you may not tell them details of what the patient has told you in confidence, unless there are issues of safety or the possibility of harm to self or others.

Nonemergent situations allow time for the psychiatrist to educate the patient on the benefits of family involvement. As I have written previously, the literature is quite clear: Family involvement improves the outcome of many psychiatric illnesses (Am. J. Psychiatry 2006;163:962-8). It should be part of our informed consent process that we let patients know this. For example, we might want to say something like this: "In major depression, the literature shows that patient outcome is much better if family functioning is good. Let’s schedule a family consultation, one session, to assess the family functioning." Or we might say: "With bipolar disorder, when family members are knowledgeable about the signs and symptoms of relapse, the patient has a better outcome."

Patients might fear family involvement because they think the psychiatrist will divulge secrets or because the patient fears being attacked by angry family members. The patient should be reassured that the purpose of the meeting is to promote general treatment goals, such as maintaining optimal functioning with lowest medication doses, and to work on future treatment goals as a team.

When the psychiatrist lays out a clear plan for the meeting, the patient grasps the importance of having everyone on board. This is what we should tell patients: "At the family meeting we will review your family’s concerns and your concerns. Many family members need help understanding your illness, the role of medications, and how best to manage when, for example, you miss a dose of medications or have questions about how closely they need to monitor things.

"If you all agree on what is important and what is less important, things will go more smoothly for you. The main focus is to have a plan going forward of how we should work as a team to get you the best treatment possible, maintain your health, and prevent relapses."

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 Professions" (New York: Routledge, March 2013), and has been a member of the Association of Family Psychiatrists since 2002.

While reading a recent article about Richard Fee, a 25-year-old college graduate who committed suicide in 2011, I couldn’t help wondering whether things might have turned out differently had his family – particularly his parents – had more to say about his psychiatric care.

Richard’s parents reportedly had a hard time accessing appropriate care for their son and suggested that his doctors’ adherence to privacy laws might have explained their behavior. Dr. Waldo M. Ellison, the psychiatrist who conducted Richard’s initial evaluation, "explained that federal privacy laws forbade any discussion of an adult patient, even with the patient’s father," the article said ("Drowned in a Stream of Prescriptions," New York Times, Feb. 2, 2013).

The Times article discussed Richard’s struggles with attention-deficit/hyperactivity diagnoses, his dark mood and growing paranoia, and his agitated, violent behavior.

Richard’s father, Rick Fee, reportedly tried to share details about his son’s behavior with the doctor but was met with resistance. "I can’t talk to you," Mr. Fee recalled Dr. Ellison telling him. "I can’t talk with you unless your son comes with you." Later in the article, however, Mr. Fee noted that Dr. Ellison "had spoken with him about his son for 45 minutes, then they scheduled an appointment for the entire family."

The Health Insurance Portability and Accountability Act (HIPPA) sets rules for the use of health information. The intent of the federal privacy law is to give patients more control over their care, but, unfortunately, the intent is often misunderstood as restricting to whom professionals can talk. What do federal privacy laws actually say about talking with family members?

The HIPAA Privacy Rule at 45 CFR 164.510(b) specifically permits covered entities to share information that is directly relevant to the involvement of a spouse, family members, friends, or other persons identified by a patient, in the patient’s care or payment for health care.

If the patient is present, or is otherwise available prior to the disclosure, and has the capacity to make health care decisions, the covered entity may discuss this information with the family and these other persons if the patient agrees or, when given the opportunity, does not object. The covered entity also may share relevant information with the family and these other persons if it can be reasonably inferred, based on professional judgment, that the patient does not object. Under these circumstances, for example:

• A physician may instruct a patient’s roommate about proper medicine dosage when she comes to pick up her friend from the hospital.

• A physician may discuss a patient’s treatment with the patient in the presence of a friend when the patient brings the friend to a medical appointment and asks if the friend can come into the room. Even when the patient is not present because of emergency circumstances or incapacity, a covered entity may share information with the person when, in exercising professional judgment, it determines that doing so would be in the best interest of the patient. See 45 CFR 164.510(b).

In light of those allowances:

• A surgeon may, if consistent with such professional judgment, inform a patient’s spouse who accompanied her husband to the emergency room that the patient has suffered a heart attack and provide periodic updates on the patients’ progress and prognosis.

• A doctor may, if consistent with such professional judgment, discuss an incapacitated patient’s condition with a family member over the phone. In addition, the privacy rule expressly permits a covered entity to use professional judgment and experience with common practice to make reasonable inferences about the patient’s best interests in allowing another person to act on behalf of the patient to pick up a filled prescription, medical supplies, X-rays, or other similar forms of protected health information.

For example, when a person comes to a pharmacy requesting to pick up a prescription on behalf of an individual, he identifies by name, a pharmacist, based on professional judgment and experience with common practice.

What to do if a patient objects

If a family member is urgently trying to reach you, it is most likely because the person has information she deems pertinent for the safe care of your patient. You can listen to anything they say. The privacy act is about protecting patient information, so that you may not tell them details of what the patient has told you in confidence, unless there are issues of safety or the possibility of harm to self or others.

Nonemergent situations allow time for the psychiatrist to educate the patient on the benefits of family involvement. As I have written previously, the literature is quite clear: Family involvement improves the outcome of many psychiatric illnesses (Am. J. Psychiatry 2006;163:962-8). It should be part of our informed consent process that we let patients know this. For example, we might want to say something like this: "In major depression, the literature shows that patient outcome is much better if family functioning is good. Let’s schedule a family consultation, one session, to assess the family functioning." Or we might say: "With bipolar disorder, when family members are knowledgeable about the signs and symptoms of relapse, the patient has a better outcome."

Patients might fear family involvement because they think the psychiatrist will divulge secrets or because the patient fears being attacked by angry family members. The patient should be reassured that the purpose of the meeting is to promote general treatment goals, such as maintaining optimal functioning with lowest medication doses, and to work on future treatment goals as a team.

When the psychiatrist lays out a clear plan for the meeting, the patient grasps the importance of having everyone on board. This is what we should tell patients: "At the family meeting we will review your family’s concerns and your concerns. Many family members need help understanding your illness, the role of medications, and how best to manage when, for example, you miss a dose of medications or have questions about how closely they need to monitor things.

"If you all agree on what is important and what is less important, things will go more smoothly for you. The main focus is to have a plan going forward of how we should work as a team to get you the best treatment possible, maintain your health, and prevent relapses."

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 Professions" (New York: Routledge, March 2013), and has been a member of the Association of Family Psychiatrists since 2002.