2

The Personal Experience

The workshop’s first panel session featured two presentations that provided an idea of the lived experience of a person with a behavioral or mental health issue¹ who may be trying to understand and communicate with health care providers. The two speakers were Lisa Morgan, an autistic adult who is the author of Living Through Suicide Loss with an Autism Spectrum Disorder (ASD): An Insider Guide for Individuals, Family, Friends, and Professional Responders (Morgan, 2016) and a feature writer for the Spectrum Women Magazine online magazine, and Kate Farinholt, the executive director of the National Alliance on Mental Illness (NAMI) state organization in Maryland. An open discussion followed the two talks.

A PERSONAL PERSPECTIVE ON EFFECTIVE COMMUNICATION²

“I believe the start to good communication in health care is listening, hearing, and seeing a person as an individual,” Lisa Morgan said. “For me,

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¹ At the workshop, speaker Wilson Compton defined “behavioral health” as an overarching term that includes mental health diagnoses, substance abuse and addictive disorders as well as behaviors that affect health, such as medication adherence (see Chapter 3). In this proceedings the term “behavioral health” is used as a general term and “mental health” is used more specifically, when appropriate.

² This section is based on the presentation by Lisa Morgan, the author of Living Through Suicide Loss with an Autism Spectrum Disorder (ASD): An Insider Guide for Individuals, Family, Friends, and Professional Responders (Morgan, 2016) and a feature writer for the Spectrum Women Magazine online magazine, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.

as an autistic adult, communicating has been one of the greatest challenges in all areas of my life, including health care.” Indeed, she explained, one of the defining aspects of autism is difficulty communicating and interacting with others socially, which can hinder the ability to gain access to the health care, and, she noted, access to health care is particularly important for individuals with autism spectrum disorder because they live, on average, 18 years less than those who do not (Hirvikoski et al., 2016). “Communication in health care is extremely important to me as an autistic adult,” Morgan said, “and in my experience the lack of understanding and huge gaps in communication between patients, doctors, and behavioral health care providers can cause harm and misdiagnoses, reduce the success of treatment plans, and ultimately not address my actual health care needs as a patient.”

Along with health care concerns, many autism diagnoses come with at least one, if not more, co-occurring mental health diagnoses that are often complicated by such behavioral health issues as social withdrawal and isolation, perseveration on negative thoughts, self-harm, pervasive aloneness, poor social skills, and high levels of anxiety. Many of those struggles, Morgan said, are all firmly rooted in miscommunication between patients, their families, and health care professionals.

To illustrate some of the challenges individuals with autism may encounter, Morgan described several communication issues she has experienced when trying to get help from physical and mental health care providers. The first occurred when she went to her and her husband’s primary care physician to get help for her husband, who was experiencing increasingly severe depression and mood swings and refused to get help himself. Morgan’s doctor agreed that he would keep Morgan’s concerns in mind during her husband’s next appointment, though he offered no support for Morgan as a concerned caregiver. At Morgan’s next appointment, the doctor, who had already examined her husband, told her that her husband had presented “fine” and might feel better if she focused on being a “nicer wife” by smiling more or retrieving his slippers for him. “I could not even speak,” said Morgan. “I left the office that day and never went back.”

Morgan recalled that her doctor never asked her how she was doing and provided no answers, referrals, or other form of help for her. “Experiencing a doctor blaming me for something that ultimately ended in my husband dying by suicide affected how I trusted any doctor for a long time, and I still struggle to trust years later,” she said. “I believe that doctor brought his own philosophy, his own prejudices, and his own preconceived notions into our conversation that day, which hurt me emotionally in the process.” That physician, she added, neither referred her husband to any mental or behavioral health care provider nor talked to her about any help she might need to cope with her husband’s deteriorating mental health. “What I sought when I first went to see that doctor was to communicate my situa-

tion, get my husband some help, and relieve my anxiety,” she said. “What I learned was communication must be a cooperative endeavor between two or more people in order to work properly.”

In contrast to that experience, she said, the psychiatrist who helped her through the last few traumatic months of her husband’s life and subsequent death by suicide listened carefully to her when they talked, which enabled her to keep her anxiety at a level conducive to understanding, processing, and remembering the information he shared with her. This psychiatrist accepted Morgan as an adult with autism, was knowledgeable about autism, and was open to learning how he could best communicate with her. She said that she came to trust this psychiatrist and developed a comfortable doctor–client relationship with him.

Unfortunately, when Morgan relocated to another state, she had to start again to find a new doctor. Although her previous psychiatrist tried to assist her, Morgan’s insurance required her to see the behavioral health professional in the medical office of her new primary care physician. Morgan arrived at her first appointment with the new psychiatrist a bit nervous, but optimistic that they “would connect in a positive way.” This hope diminished quickly, she said, as the doctor spent most of the appointment telling Morgan about her own background. The doctor abruptly informed Morgan that she would need to answer a questionnaire, which would be administered at a rapid pace, and that she had to answer as quickly and honestly as possible. The doctor proceeded to ask Morgan about her medical history, childhood, marriage, and past trauma. “She did not look at me as she continued to fire questions at me,” Morgan recalled. “She just typed and went to the next question as fast as possible.” The doctor had warned Morgan that she was going to do this, but her “processing speed is negatively correlated” to her level of anxiety, which was getting “very, very high”:

Morgan pointed out that some people might question why she did not ask the doctor to stop so that she could collect herself. “Due to the neurologic makeup of my autistic mind, the more anxiety I experience, the less I am able to talk,” she explained. “It’s during those times I need the most help,” she added.

One barrier to receiving that help is that most physicians see her as a non-autistic person displaying non-autistic behaviors, she said. “I need

doctors to know my behaviors will differ from a non-autistic person. I need them to listen to me and believe what I am saying about myself.” She also explained that the extreme anxiety she experienced during the questionnaire resulted from the posttraumatic stress disorder she had developed in the months after her husband’s death. She felt as if she had just experienced “multiple traumas all over again,” she said.

When the questionnaire was completed, Morgan said, she expected the doctor to help her regulate her anxiety and help her feel safe again. Instead, she looked at Morgan and told her she had the authority to hospitalize her and keep her hospitalized until she felt that Morgan was ready to leave. “She might as well have told me she was going to put me in prison without due process and throw away the key,” Morgan said. “I was horrified, and her words are seared in my mind.”

Morgan explained that this appointment set her back significantly in her “journey to health and healing” and said that she found it difficult to trust anyone trying to help her. The encounter affected her ability to regulate her anxiety, which was compounded by the fact that she felt the doctor could take her away from her children at any time and that there was no other practitioner available because of her insurance.

Morgan had also recently begun to see a new psychologist, who offered to help her by contacting the new psychiatrist to explain Morgan’s unique communication needs. She later learned that the psychiatrist’s perception of the intake appointment was much different from her own. This knowledge did not particularly help in Morgan’s preparation for her second appointment with the new psychiatrist. The day of the appointment, she said, her anxiety was high, and she was “extremely nervous about saying anything wrong to her.” The appointment took a negative turn when the doctor’s first question for Morgan was about whether she had taken a new medicine the doctor had prescribed in the first appointment. Morgan explained why she had not:

The psychiatrist, Morgan said, replied that she was “not going to go to [her] house and shove [the medicine] down [her] throat.” Morgan noted that she felt unsafe again, her anxiety increased, and she could only focus on the idea that the doctor made a comment about coming to her house, so she withdrew from the conversation. After Morgan left the appointment,

she spent additional time managing her anxiety so that she could safely drive home.

Morgan concluded that her current psychiatrist and psychologist have “diametrically opposed philosophies on how to relate” to her. While her interactions with her psychiatrist have been fraught with fear and anxiety, her psychologist communicates with her respectfully as who she is, “an educated professional who has experienced multiple traumatic situations.” The psychologist does not patronize Morgan or treat her as though she is unable to help herself. Her psychologist actively listens, offers guidance, and offers space for Morgan’s autism. Her knowledge of autism allowed the two of them to “communicate with each other instead of just trying to communicate.” Her psychologist used her previous knowledge of autism and conversations with Morgan around sensory needs to create a safe and comfortable environment for their appointments. Their patient–provider relationship is open, honest, and trusting, Morgan said, and her psychologist is an “essential person I trust as I continue on my journey toward health and healing.”

Morgan observed that she has had both positive and negative experiences with different health care providers. The positive experiences, she said, come with good communication.

“Hearing,” she noted, differs from “listening,” for “hearing” enables contextualizing her medical history within her life. Additionally, “seeing” is being able to recognize that she is an individual patient and not just another appointment to get through. She concluded by adding that gleaning a sense of the big picture out of the details allows providers to ask the right questions so that patients can give the right answers.

WHAT PEOPLE AFFECTED BY MENTAL AND BEHAVIORAL CONDITIONS WANT YOU TO KNOW³

One in five people in the United States will be affected by mental illness in their lifetimes, and suicide is the second-leading cause of death in the

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³ This section is based on the presentation by Kate Farinholt, the executive director of the National Alliance on Mental Illness in Maryland, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.

United States for people 15 to 24 years old, Kate Farinholt told the audience as a way of putting behavioral and mental health issues in context. NAMI bases its approach to mental illness in the belief that mental illnesses have a biological basis, are no one’s fault, and that the experience of mental illness is itself traumatic, both in the past and ongoing, for individuals with a mental illness and their families. NAMI also operates from the belief that the most effective treatments for mental illnesses jointly address biological, psychological, and social elements and that the gold standard of care is collaborative. “Most importantly,” she said, “we believe that the lived experience of people with mental illness and their families is absolutely essential in helping people in the world to understand and think about how they might change systems and programs and that our voice should be in the conversation about how programs might be changed.” Farinholt said that like most people who become involved with NAMI, she joined the organization because she had a relative with a mental illness—in her case a sister who developed schizophrenia at age 11.

There are many stereotypes about mental illness, including that individuals with a mental illness are dangerous, irrational, unpredictable, and incompetent; deserve blame for their condition; have little hope for recovery; have no support network; and cannot work or communicate with supporters. But perhaps the most damaging, Farinholt said, is that people with a mental illness are their mental illness. To the contrary, she said, a typical example of someone with a mental illness is Deneice, NAMI Maryland’s program specialist who happened to have developed a mental illness in her thirties. At the time she developed symptoms, she had a job at the U.S. Department of Defense. Eventually she lost that job, ended up homeless, and would sleep under bushes when she was not in a psychiatric hospital. At one point she walked into the NAMI office in Baltimore, where she met and talked to Farinholt, who connected her with a NAMI peer support group and eventually hired her as the program specialist for NAMI Maryland.

There are stereotypes about families dealing with mental illness, Farinholt said—that they are to blame; that they are enabling, pushy, and controlling; and that they have no useful information about their loved ones or resources to call on during times of crisis. Again, these are not accurate. For example, Farinholt said that she knows more about her sister than anyone and that she can identify the initial signs that her sister’s illness is about to cause problems. Yet, for years, Farinholt said, she could not get a psychiatrist or primary care physician to understand that she knew her sister’s history and what the indications of a problem were. Fortunately, her sister now has a psychiatrist who gave Farinholt his cell phone number in case of emergency. “We have never used it, but he is very inviting,” she said.

Her sister’s mental illness also affects the non-psychiatric care she receives. When she goes to primary care for a health issue, Farinholt said,

all the clinical staff sees is that she has schizophrenia, not that she has a fungal infection on her foot. And the family is rarely asked for what could be very useful information. “I might be the one who often looks angry and aggressive when I am trying to advocate for my sister,” Farinholt said. Similarly, years ago, if her sister had a particularly bad episode and trashed the house, the only way to get her sister to the emergency room would be by calling the police. Yet, by the time the police arrived, her sister would have calmed down, and Farinholt would be the one with wild eyes. As a family member advocating for her sister, she said, “I have to work on presenting myself as the calm one to, first, get them to recognize that my sister is the person with the problem, but also to convince them that I have some useful information, such as my sister is scared of people carrying guns.”

NAMI, she said, views mental illness as a catastrophic stressor to the individual and to his or her caring family. A catastrophic stressor, she said, is an unanticipated event that occurs with little time to prepare (Figley and Kiser, 1989). It happens in an area where one has little previous experience and few sources of guidance, and it has a high emotional impact. “I can tell you that being told that your sister has paranoid schizophrenia, that there is no hope, and you might as well just give up, that is a huge stressor,” Farinholt said. For the affected individual, receiving a diagnosis of mental illness can also be a traumatic stressor, although, she added, it can also be a relief to receive an explanation for the symptoms one has been experiencing. Either way, she said, ongoing trauma is part of mental illness, not just a trigger or potential risk factor.

Farinholt said that there are recognizable, predictable stages of emotional reaction to the experience of mental illness and recovery (see Box 2-1), which NAMI uses to help individuals and families see what they need at particular points along their journey. She added that while she now has to note on health forms that she has a relative with a mental illness, she cannot remember a single time when any health provider, except for her personal psychiatrist, has ever asked how she is doing and how her sister’s illness is affecting her.

One of the common problems that individuals with a mental illness and their families encounter is that health care providers misread their reactions to the ongoing and episodic trauma that accompanies these diseases. Farinholt said that NAMI Maryland offers training for providers to help them recognize the different reactions to these traumas and learn how to accommodate them. While it is not currently available in all states, NAMI offers a provider education class that is designed to expand providers’ compassion for the affected individuals and their families and to promote a collaborative model of care. NAMI programs differ from one affiliate chapter to the next, but many of these chapters offer classes for families and individuals on topics such as the stages of adherence and recovery, empathy

and empathic guidelines, how to collaborate successfully with the health care system, advocacy, and communication strategies and skill building.

Families, she said, need to feel understood at a time when they might have difficulty communicating. She noted that the Center for Integrated Health Solutions, operated jointly by the Substance Abuse and Mental Health Services Administration (SAMHSA) and the Health Resources and

Services Administration, lists nine core competencies for an integrated behavioral and primary care workforce, two of which concern interpersonal communication and collaboration and teamwork. NAMI Maryland offers in-depth workshops on how to communicate with a patient with a mental health condition who is in crisis; these focus on determining if the patient is able to communicate and provide information to the provider, if the patient understands what the provider is saying, and if the patient needs a supporter to assist them in reporting or understanding (see Box 2-1). The key, Farinholt said, is that providers or crisis workers not make an early assumption about whether (or how well) a patient is capable of communicating but instead to observe how a patient is behaving.

Farinholt’s final comment was that as a family member and her sister’s supporter, she needs information—not about how her sister is behaving at a particular moment but rather about what medication she is on and what Farinholt should be watching for regarding side effects or efficacy. She added that her sister lives in a group home and attends a day program but that neither of those places communicates with Farinholt even though she is a family member.

DISCUSSION

Bernard Rosof began the discussion by asking Morgan and Farinholt what changes they would make to address the bad experiences they have had. Morgan said that she would create an interpretation book similar to a foreign language phrase book that would allow for free-flowing communication between her and her health care providers. Farinholt said that she wants to see all health care professionals trained in basic communication skills and taught about the various mental illnesses so that they communicate effectively with someone who is having a behavioral health issue.

Catina O’Leary from Health Literacy Media asked the two panelists what had allowed them to be brave and continue searching for the right provider who could communicate effectively with them. Morgan said she kept searching because she knew she needed help from a professional and that there are providers out there who are good communicators. She added that it does not take much for a provider to make a huge difference in the life of someone with a mental illness or behavioral health illness. “It takes seeing the person for who they are because everybody is so different, and just listening and making that connection,” she said. Farinholt said that the wonderful psychiatrist who has stuck with her sister has decided to retire and let the family know a year in advance. “We are concerned, and I am a little tired and also getting older,” she said. She has trained her three sons and hopes that between the three of them they will find a way to advocate for their aunt when Farinholt is gone. “But right now,” she said, “the con-

cept of having to find another psychiatrist who will go the extra mile is really concerning. I do know that there are a lot of really great primary care and psychiatrists out there. The question of how to find them is a little harder.”

Lawrence Smith from Northwell Health said that as a primary care physician his perception is that many psychiatrists are not interested in getting information from the referring doctor or family members, which he blames on a deep-seated cultural characteristic of that particular medical specialty. “They [psychiatrists] simply want to take care of the patient in a separate, secret box and tell no one about what happens for fear of the stigma if it gets out that that patient has a mental illness,” he said. Smith said that this attitude is epitomized by the fact that if he goes to a patient’s electronic health record (EHR), he cannot find any record of anything that happens in the department of psychiatry because that information is hidden in the electronic record. “Until we are all willing to take a little bit of a risk that we believe that behavioral health has a biologic basis, and this is just another set of problems that we should not be afraid of telling people we are dealing with, we cannot solve this problem,” he said. Smith acknowledged that U.S. society may not be ready to consider mental illness as just another biological illness, but he countered that having HIV/AIDS was de-stigmatized in a very short period of time. “I think we can face this challenge and do it,” he said.

Farinholt and Morgan both agreed with Smith that record sharing is an impediment to care for those with a behavioral health disorder or mental illness. Farinholt added that health systems are changing how they include those issues in the medical record. She noted that her own medical record now includes an incorrect note from her primary care physician about depression, and, as a result, her neurologist now asks her how her depression is doing even though her thyroid problem, which was the issue, has been resolved. But, it is also another example of seeing the patient as their illness, she said—as soon as the neurologist saw that the primary care physician had noted that Farinholt denied having depression, that was the question her [former] neurologist focused on.

Michael McKee from the University of Michigan Medical School pointed out that the burden of mental illness is high among patients with various types of disabilities, and he called on medical schools to do a better job training physicians on basic communication principles, particularly regarding communication with populations that may need more clarity and openness from their health care providers. He then commented on the difficulty of finding providers who are good communicators and suggested that some organizations should consider developing tools or resources that would help patients with this difficult task. For example, the organization help.org established a list of providers who are fluent in American sign language. McKee said that he is hopeful that insurers will start identifying

providers who have specific skill sets, such as second language fluency, that would help patients.

Farinholt replied that the disability community and mental or behavioral health organizations such as NAMI are now being invited to the table to discuss this very issue. She said that NAMI Maryland does not refer people to specific providers but that people in its peer support groups are absolutely sharing the names of good and bad providers. Morgan added that the autism community relies on grassroots, word-of-mouth approaches to identify good providers.

Johanna Martinez from Northwell Health said that she tries to teach her students that the patient’s voice is the most important. “I think in every other field outside of health care the consumer has so much to say on the product that is being delivered or how that product is being delivered, and yet, in health care we have a lot of room to grow in that area,” she said. Noting that there are efforts to increase the patient’s voice in medical practice, she asked the panelists if they had any ideas on how to more systematically include the patient voice in the process of delivering care, in addition to the personal experience in receiving care. Farinholt said that SAMHSA has funded a program on the integration of mental health and behavioral health into pediatric care that has a focus on patient and family involvement and engagement in system and program changes and design. Now, thanks to the Pediatric Integrated Care Collaborative at the Johns Hopkins Bloomberg School of Public Health, there is a toolkit that includes a focus on increasing the patient voice in care delivery.⁴ Farinholt said that making health care practices trauma-informed and inviting family engagement are both important. Morgan added that physicians need to listen to the parents of the children they treat. “There is a high percentage of doctors that I have gone to for my children who do not think I know them at all,” she said. “Listen to moms. It is a great beginning.” Farinholt seconded that message.

Christopher Dezii from Bristol-Myers Squibb commented that he was struck by the fact that there are still communication problems involving mental health and primary care providers after many years of dealing with this issue, and he wondered if there is even sufficient access to mental health professionals. Farinholt said that in Maryland access to psychiatric health care is “very difficult.” This is particularly true for children, she said, given that there are large parts of the state where there are no child or adolescent psychiatrists. The state’s Behavioral Health Integration in Pediatric Primary Care program is attempting to address this shortage by making child and adolescent psychiatrists in the Baltimore and Washington, DC, area available immediately via telemedicine in response to a call from a pediatrician.⁵

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⁴ For more information, see https://picc.jhu.edu (accessed September 7, 2018).

⁵ For more information, see http://mdbhipp.org (accessed September 7, 2018).

She said that psychiatrists may get paid far less than other specialists, so there may not be as much incentive for people to go into this field.

Responding to a question from Rosof as to whether the nation’s health care system is prepared to address the relationship between communication problems and how physicians are educated and how care is delivered, Smith said that his institution teaches psychiatry and neurology as a single entity and that mental health disorders are biological diseases. “Our students then go into a clinical world where they are stunned that no one thinks or behaves that way,” he said. “It is very difficult to sustain learning that is never reinforced in the actual care delivery space.” In his opinion, he said, attitudinal change has to start with the people already in practice who are the role models of the next generation of physicians. Earnestine Willis added that health care professionals need to do more work on de-stigmatizing mental and behavioral health, both within their ranks and out in the community. Martinez said that, in her experience, medical educators are prepared to meet this challenge, but she added that physicians in training also need to learn that the social determinants of health and behavioral health, not biological factors, are probably the biggest predictors of health outcomes. She agreed with Smith that new physicians are not getting the lessons they learned in medical school reinforced by their mentors in practice.

REFERENCES

Figley, C. R., and L. J. Kiser. 1989. Helping traumatized families. San Francisco, CA: Jossey-Bass.

Hirvikoski, T., E. Mittendorfer-Rutz, M. Boman, H. Larsson, P. Lichtenstein, and S. Bolte. 2016. Premature mortality in autism spectrum disorder. British Journal of Psychiatry 208(3):232–238.

Morgan, L. 2016. Living through suicide loss with an autism spectrum disorder (ASD): An insider guide for individuals, family, friends, and professional responders. London, UK: Jessica Kingsley Publishers.