1. What is the context for decision making?

2. Differing conditions

Here, we are considering three types of conditions that can impact the person’s cognitive functioning and decision-making process:

a) Differing types of involuntary decision making

This is not intended to be a full review of the various legal requirements for involuntary detention and treatment and implications for decision making. There may be temporary uses of involuntary decision making, such as invoking legal regulations for purposes of involuntary assessment and involuntary treatment for mental and medical conditions or temporary guardianship. Any of these could occur if the person is in the throes of an acute episode of mental illness (e.g., schizophrenia, severe depression or bipolar disorder), temporarily affected by intoxication or overdose and during times when the person has cognitive impairments and behaviours that challenge related to a medical illness. The nominated next of kin or other family members and caregivers are likely to be involved in these decisions. Involuntary detention and treatment might be followed by a community treatment order, which mandates follow up after discharge.

For enduring or worsening conditions, there might be need for ongoing guardianship which might include making decisions for persons who are assessed to lack decision-making capacity in areas such as finance, accommodation, medical or psychiatric interventions. Usually family members are nominated as guardians unless they themselves decline or are deemed unfit, unsuitable or unavailable.

3. The elements of ethical care from the caregiver’s perspective

Some of the general principles in decision making across all types of conditions or illnesses include: a) even when unwell, people can contribute to making decisions and provide assent or limited consent, b) in their supportive role, caregivers need to be clear about what areas are important for affected person; it is best to appoint someone who can speak for the person, understands the person’s view and seems to have the patient’s interest foremost; c) there are decision-making steps that can be used, with some general and some condition-specific issues, and d) the decisions need to be realistic and achievable.

In considering how best to support capabilities of those who need support from caregivers to make health care decisions, it is important also to address five elements of ethical care. These have been described as attentiveness, responsibility, competence, responsiveness, and care for self ⁽¹⁾.¹ The first four operationalize what many clinicians gauge intuitively, while the fifth, which is also important, can be easily overlooked by medical staff and caregivers alike.

It is helpful to check carers’ understanding, expectations, experience, and the model of care they are operating with. There might or might not be a ‘fit’ between the model of care of clinicians and caregivers, and importantly, not all healthcare professionals might use the same model, and might or might not be aware of these differences. This can result in conflicting messages being delivered to caregivers. Even when there are other people involved in a person’s care, if often falls back on the person’s family because family members are generally still around when no one else is available.

In turn, caregivers can more easily provide respectful care, including supporting decision-making capabilities, if they have a clear role and are respected by others and themselves. To do this, they need access to reliable sources of information from clinicians, support groups, credible internet and local information.

However, caregivers are human, and family members often have mixed emotional responses (e.g., relief, guilt, anger, sadness, worry, stress) when dealing with their relative in situations occasioning involuntary treatment, especially if the situation is enduring and they have a difficult relationship with healthcare professionals. This can lead to situations of high emotion. At times, this is complicated by the fact that relationships with caregivers have been frayed or fractured prior to the acute episode. Particularly in the case of some mental illnesses, the family and friends have lost contact with the person for a variety of reasons (e.g., they don’t trust the person, they have been hurt by them or feel afraid due to delusional thoughts involving them, they have been the source of trauma or been seen as ‘stifling’). In the case of long-term disorders, they may be worn out if they have insufficient respite or support. However, where the affected person has been missing engaging with family members, an involuntary admission might be a chance for them to reconnect with their family.

Potential barriers to caregiver involvement in supporting healthcare decision making include lack of adequate caregiver support, lack of health service provider resources, and patients who are seen as being too dangerous and/or erratic to be involved in the process.

4. What do caregivers need?

Box 3 has a story from a caregiver’s viewpoint. This illustrate some of the difficulties and mixed emotions associated with being a caregiver in acute episodes of mental illness. A recent Australian study ⁽²⁾ interviewed 19 family members who had a family member involuntarily detained mostly for a psychotic illness. This is usually a very stressful time for caregivers who are searching for answers and adjusting to the realities of their affected member’s condition. They noted four critical elements that assisted the families in providing recovery-orientated support, which include:

They concluded that «family wellbeing is improved when they feel part of a supportive team» and recommended that families should have ready contact and access to information about their relative and that it was important for healthcare professionals to «acknowledge families relationships, expertise, and understanding of their family member».

As part of the elements of ethical care, including supporting decision-making capabilities, caregivers also need to be given the opportunity and encouragement for self-care of patients as well as themselves. A recent Australian study used The Optimal Health Program, a series of modules offered to patients and caregivers to address caregivers’ concerns and to enhance patients’ self-efficacy in crisis and maintain wellbeing, while helping them gain a better understanding of the healthcare system and their own treatment. This Program has been used for people affected by a stroke and their caregivers ⁽³⁾. Similar interventions aimed at promoting caregiver welfare have been important in supporting families with a member with dementia. They are less common for families with a member with mental illness.

In general, caregivers seek to be and should be involved in shared decision making with healthcare professionals to support the person to whom they both provide care. Elwyn et al.’s paper provides a 3-step model for shared decision making: 1) introducing choice; 2) describing options, often by integrating the use of patient decision supports, and 3) helping patients explore preferences and make decisions. This involves a process where both caregivers and clinicians work with the person to make decisions based on ‘what matters most’ to the person ⁽⁴⁾. This process is also shared in Gawande’s book about dealing with end-of-life issues ⁽⁵⁾.

Some other models for enhancing caregivers’ support of family members worth noting include the family-focussed recovery practice, which is used to support the family to better assist their relative with compromised mental health in recovery, and secondly to address the needs of the family members themselves ⁽⁶⁾. A familyfocussed recovery framework is needed to assist service planners, practitioners, family members and those with mental health needs and should be embedded within practice guidelines. There has also been success in teaching families to use a problem-solving approach (Family Problem Solving Therapy) to improve family function, particularly in dealing with crisis situations ⁽⁷⁾.

These are some suggested areas where reliable information would benefit caregivers in supporting family members with compromised mental health:

Of note, the World Health Organization (WHO)’s ⁽⁸⁾ iSupport manual for caregivers of people with dementia addresses many areas mentioned above. It includes five modules, namely: a) introduction to dementia; b) being a caregiver; c) caring for me as a caregiver; d) providing everyday care; and e) dealing with behaviour changes.

There is not a corresponding manual for people caring for someone with compromised mental health, but due to the great diversity and range in severity of mental health conditions, developing such a manual might not be so simple. There are organizations giving support to caregivers of persons with specific disorders such as psychosis, eating disorders and depression. These are too numerous and diverse to specify here, but advice contained in such manuals are often not sufficient for caregivers dealing with acute, emotionally charged situations, such as the example cited below in Box 3.

Conclusion

Some cultures and societies have looked to care by extended families. In other cultures and societies, institutional care is still preferred for people with intellectual and developmental disabilities, progressive neurological disorders, compromised mental health and addiction. There is now, however, less access to institutions and smaller, more diverse families. At the same time, there has been greater interest in transparency in health care and access to information. These changes have placed more focus on a smaller number of caregivers, with the result that the caregiver’s role, along with definitions and medico-legal implications, has been evolving.

The three groups of conditions mentioned have different time courses and impacts on the person involved and their caregivers. Approaches to caregivers to caring and supporting capabilities of their loved ones to make healthcare decisions, therefore, can vary among these conditions. However, some principles apply across all groups: caregivers need recognition and support for the roles they undertake and access to information about how to best fulfil these roles. They need to look after their own health and wellbeing as well as that of the person for whom they are caring.