Family caregivers must be given essential information about their relatives’ severe mental illness

What is a psychotic illness

A psychosis is a severe mental illness in which the person loses contact with external reality. Psychotic illnesses are characterized by delusions and hallucinations. A delusion is a fixed, false belief that is not shared by the person’s peer group. Hallucinations are the experience of perceptions, usually voices or visions, without a stimulus.

Other common symptoms of psychotic illnesses are thought disorder, anosognosia, and impaired motivation. Thought disorder is a disruption in the form of thought processes and is sometimes referred to as “formal thought disorder.” Thought disorder may be so severe that the person’s speech becomes unintelligible. Anosognosia is a common symptom of psychotic illnesses and of neurological diseases such as after some types of strokes. A person suffering from anosognosia is unable to recognize that they have an obvious disability. Anosognosia is sometimes referred to as lack of insight but importantly it is caused by biological brain dysfunction and not by psychological mechanisms. Amotivation is associated with disrupted functioning of the frontal brain lobes that causes the person to become increasingly apathetic and unable to reach out for assistance or plan for their future.

Approximately 3-4% of Canadians suffer from a psychotic illness during their lives.

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Current disfunction in the mental healthcare system

Anyone who follows the media or walks through the centre of any Canadian city knows that our mental health system is failing to protect many of our most vulnerable citizens. The failure to provide treatment to people with severe mental illness is not due to a lack of funds rather to a lack of commitment to provide treatment to our most ill citizens. Despite multiple injections of money to mental health services in recent years we have witnessed a deterioration in the care of people suffering from severe psychosis. This is because increases in funding have been directed to programmes for people who have less severe psychological problems.

 

People who suffer from psychotic illnesses require specific services such as: a hospital bed when they are acutely ill; assertive treatment teams to ensure that they don’t dropout of follow-up; and appropriately staffed, long-term residential group homes, where they can live safely.

 

Without these services people with the psychotic illnesses often drop out of treatment and end up living on the streets. Indeed, people who suffer from a psychotic illness already make up 20% of the homeless population. The experience of clinicians indicates that people with severe psychosis can only be successfully housed when they have received appropriate treatment for their psychotic illness

 

How did we get here?

Our current problems originate in the failed implementation of the policy of deinstitutionalization. Before the availability of antipsychotics many people who developed a psychotic illness spent most of or their entire lives in hospital due to uncontrolled psychotic symptoms. The introduction of effective antipsychotic medication in the 1950s and 1960s allowed doctors to discharge hundreds of thousands of patients from large psychiatric hospitals. When treated with antipsychotic medication and discharged these patients still required intensive follow-up and care in the community. Governments promised to use the savings from the closure of the large psychiatric hospitals to fund the required community services. However, most savings that were reinvested were actually diverted to programs serving people with less severe problems because these people were better able to lobby for their own needs.

 

Some writers refer to deinstitutionalization as an historic event, but Canada continues to reduce the number of available psychiatric beds in our hospitals. This make it increasingly difficult for someone suffering from a psychotic illness to obtain an admission when acutely ill, which in turn leads to increasing numbers of people on our streets who are paranoid, hallucinating and homeless.

 

The role families play in caring for people suffering from psychotic illness

Because of the limited availability of suitable community-based services families have had to take on a greater role in providing care for their ill relatives. More than half of people who suffer from schizophrenia live with their family. In addition to providing shelter for their ill relatives, families look after other essential needs such as housing, nutrition, clothing, and transportation. Also, due to the inadequacy of community services, many family caregivers are forced to act as de facto case managers – taking their ill relatives to clinical appointments, encouraging them to take essential medication, checking for the emergence of side-effects and monitoring for the return of psychotic symptoms

 

The lack of support for family caregivers

You would expect that society would support families who provide this type of intensive care for relatives suffering from psychotic illnesses. However, families report that they receive little support, and they specifically complain that mental health services fail to provide essential information needed to carry out the arduous task of caring for someone with a psychotic illness.

An individual who has anosognosia cannot recognize that they are ill and need treatment, and a responsible and informed person must closely monitor the ill individual’s treatment and response to that treatment. If the ill individual is a patient on an assertive treatment team, a clinician undertakes this role. However, as noted above, we do not have enough assertive treatment teams and consequently it is family caregivers who must monitor treatment adherence and watch for early signs of relapse for most individuals who suffer from anosognosia.

To provide effective monitoring and support those family caregivers must have information about their ill relative’s symptoms, medication regimen, what to do in an emergency, etc. It is unacceptable that this critical information is withheld by hospitals and individual clinicians because of “privacy concerns.”

 

The failure to share necessary information with families

We support keeping an individual’s personal health information private. However, this right to privacy is not absolute, and all Canadian provinces and territories identify in legislation specific situations in which hospitals and individual clinicians must divulge information. These legal requirements are often ignored. From the perspective of family caregivers, the three most important scenarios are :

1. the failure of clinicians to contact family members to obtain collateral information.

2. the failure of clinicians to provide information to families in situations where that failure increases the risk of harm to the ill individual or to others.

3. The failure to recognize when an individual lacks the legal capacity to prevent the sharing of their health information.

 

Collecting information without the person’s consent

All Canadian jurisdictions have legislation that permits the collection of personal health information from third parties without the consent of the patient if that information is necessary to provide appropriate healthcare, and it is either not available from the patient in a timely fashion, or is unlikely to be reliable when obtained directly from the patient. Despite the existence of this legislation clinicians repeatedly fail to contact family caregivers to obtain collateral information in situations in which that is essential, such as following a suicide attempt or when the patient is delusional.

 

Release of information without the person’s consent

Although the media is obsessed with the rare acts of violence against strangers, it is family caregivers who are most likely to be killed or seriously injured by a mentally ill relative. Yet clinicians often neglect to tell family caregivers that they are a focus of their ill relative’s paranoid delusions.

 

The capacity to decide on releasing or withholding information

All Canadian citizens have the right to make their own decisions about finances and healthcare, unless they lack the legal capacity to make these specific decisions. Lack of capacity is caused by severe cognitive deficits, such as those that can occur in intellectual disability or dementia. Lack of capacity can also be caused by severe mental illness. For example, a person suffering from mania may believe they have invented a way to turn salt water into gold and as a result decide to cash in their RRSPs and buy a yacht. When a person lacks capacity for a specific type of decision that decision is taken by a substitute decision-maker designated by the jurisdictions law. The substitute decision-maker is usually a family member, but in some provinces it is the public guardian.

 

Similar to treatment and financial decisions many patients with intellectual disability, dementia and psychosis lack the capacity to decide if aspects of their health care information should be shared with others. Under provincial and territorial legislation if someone is incapable of deciding whether their healthcare information needs to be shared this decision should be made by the appropriate substitute decision-maker. However, clinicians almost never use this component of the law even when a patient is clearly incapable of appreciating the need to disclose aspects of their healthcare information to their family caregivers. This causes major disruption and suffering for the patient, their family and society in general.

 

Why do clinicians not share information with families?

Aspects of privacy legislation in a few Canadian jurisdictions are barriers to the appropriate sharing of information with families and these provisions should be amended. However, most jurisdictions have legislation that supports the appropriate sharing of legislation, and the primary problem is that hospitals and clinicians fail to follow the requirements of the legislation. So why do hospitals and clinicians not provide critical information to family caregivers and exclude them in treatment planning in general? In a review of studies that examined this question researchers reported that the main reasons appear to be clinicians’ ignorance of key aspects of privacy legislation, a management and professional culture that is unsupportive of family involvement and a lack of training on how to work with patients in a family context1

 

How can the problem be resolved?

As already noted, any provisions in legislation that are a barrier to the appropriate sharing of information should be amended. Further, governments must, as a priority, ensure that clinicians are aware of the privacy legislation in their jurisdiction. To achieve these objectives government will need to partner with professional regulatory colleges and professional training schools in a concerted effort to ensure that clinicians understand and appropriately implement legislation on healthcare information. We hope that education will redress most of the current difficulties. However, we suspect that some form of ongoing monitoring of compliance with legislation will be required. This presumably will fall to regulatory colleges. FASMI is committed to seeing this change in the system and is willing to work with governments, regulatory colleges and professional trainong schools to develop appropriate materials.

 

 

1 Eassom, E., Giacco, D., Dirik, A., & Priebe, S. (2014). Implementing family involvement in the treatment of patients with psychosis: A systematic review of facilitating and hindering factors. BMJ Open, 4, e006108.