This final segment of a two-part blog on the film Wilderness explores strategies to help families manage when their relative, experiencing a first episode of serious mental illness, refuses to seek care. The first blog posted back in June, 2015 focused on the perspectives of parents trying to navigate the mental health care system. Wilderness is a 10-minute film about a mother’s journey through the mental health care system:
What can care providers do for families seeking care for a relative experiencing a first episode of serious mental illness?
Health care providers are in a position to address some of the isolation, grief and desperation so many families experience during this process. This film suggests that care providers need to recognize the distress families undergo. However, care providers may not always identify when it is occurring. Health care providers may be a valuable support to families, helping them stay united and connected to each other, including their ill loved relative. It highlights the need for education, support, and partnership in caring for mentally ill youth. Research suggests providing care to the family, not just the ill relative, may improve outcomes for young patients experiencing a first episode of psychosis1.
What if an ill relative refuses to get help?
Educating family members about community mental health services may go a long way towards helping youth with a first episode of psychosis to seek appropriate help. Our research has shown that treatment for a first episode of psychosis is initiated predominantly by family members2. However, as demonstrated by the film, families often face challenges trying to get their ill relative to seek help. Youth especially may not recognize changes to their mental state because of poor insight and, as a result, may not be interested in seeking help.
Young people with emerging psychosis may refuse to follow any advice offered by their closest family members. Long standing family problems can exacerbate misunderstandings and misperceptions triggered by the psychosis. Sometimes, young people are actually experiencing paranoid beliefs about individuals in their family. Paranoia of close family members probably happens more often than family members and care providers realize and can contribute to the kinds of verbally hostile interchanges portrayed by the film.
There are organizations that have expertise to help family members when a mentally ill relative refuses care: The Schizophrenia Society of Canada, Al-Anon, Mood Menders, Canadian Mental Health Association and the National Alliance on Mental Health. These community organizations support and coach family members as they access the mental healthcare system.
The influence of a mentor may also help the young person to seek care. Often a family member, friend, relative, or mentor who is trusted by the young person will assist in these circumstances. Sometimes this family friend can simply listen and support in a calm manner. This approach helps the young person to re-evaluate how they want to deal with the problem. The mentor shores up resilience in the young person and their family. Simple suggestions go a long way: encouraging rest, healthy eating, exercise, limiting alcohol, abstaining from drugs, and re-connecting with family and friends. Offering to accompany a young person to a community mental health service can reduce the young person’s anxiety and resistance about going to a new place. If the mentor/family member is part of the assessment process and agrees with the recommendations from staff, then the young person may be more willing to accept treatment recommendations.
A family doctor can be a good first contact along the continuum of care. Primary care providers are familiar with the mental health care system and can make appropriate referrals. The family doctor knows the family and can support the ill relative until a specialized service becomes involved. Our research has shown that family doctor involvement is associated with less adverse routes into the mental healthcare system, such as criminal justice system involvement or involuntary hospitalizations, for young people with emerging psychosis3. Finally, if a family physician has assessed the young person within seven days, then there is a possibility to detain under a Form 1 of the mental health act, if the family has concerns about the risk of harm to the young person or others.
Unfortunately, sometimes family doctors, mentors, and family input are not sufficient supports to help a young person seek or accept care. In these situations, the mental health concerns may escalate in severity and eventually require emergency care. With proper coaching, families can be provided with adequate information so they know when it is time to call 911 or take the ill person to the emergency room. Families need to understand that their loved one can be taken to hospital against their will by police if the individual’s behaviour suggests they may be a danger to themselves or others because of their mental state. Families can be coached to monitor for relevant signs that will support an involuntary psychiatric examination at an emergency room under the mental health act. Under the mental health act, families can apply to a Justice of the Peace for the police to take the person for a psychiatric evaluation at a mental health facility. The family must properly document their concerns about a young person’s mental state. To qualify, the young person’s mental state must put them at risk of being a danger to themselves (for example suicidal gestures or statements), or to others (verbally aggressive threats). The documentation is then taken to a police station where it is reviewed to determine whether it is sufficient for apprehension by police under a Form 2 under the mental health act.
What if the person is admitted to hospital but refuses treatment?
Many families assume that once their loved one is in the care of a hospital under the mental health act, their son or daughter will receive the psychiatric treatment they need. Families often do not realize that capable individuals have the right to refuse treatment, even if they are admitted to hospital under the mental health act. As long as the person is deemed competent to make treatment decisions, they, like all members of our society, are not obliged to accept treatment.
Health care providers need to explain to families exactly how the mental health act works. Psychiatric treatment cannot be provided against someone’s will unless there is a psychiatric emergency or the individual has been deemed incapable under the mental health act. In the case of psychiatric emergencies, the treatment has to be limited to chemical restraint for the purposes of protecting the safety of the person or others. Medications used for chemical restraint are effective treatments but can no longer be ordered against the individual’s will once the risk has resolved. These policies uphold everyone’s civil liberties, but they also allow many people with serious mental illness to refuse psychiatric treatment including medications, psychosocial interventions, and hospitalization.
Assessing capacity to make treatment decisions can be a critical first step towards obtaining regular, as opposed to emergency, treatment. Incapacity is a concern when the young person does not appreciate the consequences of not accepting treatment. In the case where the ill relative is deemed to not have the capacity to make treatment decision under the mental health act, family members or public guardians will be called upon to be the substitute decision maker.
Community Treatment Orders (CTO), allow young people, who have met criteria for apprehension under the mental health act, to be treated against their will for up to 6 months at a time. However, a CTO can only be enforced against someone’s will if their capacity to make treatment decisions is impaired based on criteria set out by the Mental Health Act. If these stringent criteria are met, then a family member can participate as a substitute decision maker and the individual can be treated against their will in the community. CTOs can also be renewed up to 6 months at a time, as long as the young person meets the criteria.
How can health care providers help families dealing with mental health and addictions crisis?
In this film, the mother drops by the clinic in crisis when the nurse is busy with other clients. Informing family members about how to access help during a crisis allows health care providers to be more helpful to family members. The nurse refuses to speak to the mother, but this may have been a lost opportunity to help the client and his mother. Families need to be informed ahead of a crisis how to manage. A phone call to the clinic would allow the nurse to call her back and address the mother’s concern at a time when she was not booked with other clients. The nurse could have given the mother some advice about the Justice of the Peace and when it might be appropriate to access police services. If the doctor had seen the patient within seven days, then a form 1 could have been completed for an evaluation at a psychiatric facility. The mother could then have been scheduled for a clinic visit at a later point.
In summary, the system does not always support families in a compassionate manner, even though health care providers are concerned about the family’s plight and want to offer support. Crises can be opportunities for helping families so their loved ones can access specialized care. Developing preventative plans ahead of time that involve the family may help to manage crises more effectively.
– Suzanne Archie, September 2015
- Bertelsen M, Jeppesen P, Petersen L, et al. Five-year follow-up of a randomized multicenter trial of intensive early intervention vs standard treatment for patients with a first episode of psychotic illness: the OPUS trial. Arch Gen Psychiatry Jul 2008;65(7):762-771.
- Archie S, Akhtar-Danesh N, Norman R, Malla A, Roy P, Zipursky RB. Ethnic diversity and pathways to care for a first episode of psychosis in Ontario. Schizophr Bull Jul 2010;36(4):688-701.
- Anderson KK, Flora N, Ferrari M, et al. Pathways to first-episode care for psychosis in African, Caribbean, and European Origin Groups in Ontario. Canadian Journal of Psychiatry; 2014.
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