"My child's doctor won't talk to me", is a common refrain of many parents who have a seriously mentally ill child, whether that child is 14 or 40. So why do so many psychiatrists and allied mental health professions refuse to talk to family members?
Excluding family from a patient's care is contrary to the Canadian Medical Association's Code of Ethics, that urges physicians to "....be considerate of the patient's family and significant others and cooperate with them in the patient's interest". The Canadian Medical Protection Agency (CMPA), which has a mandate to "...protect the professional integrity of physicians and promote safe medical care in Canada", suggests doctors, "communicate openly, sensitively, respectfully, and professionally with the patient and family".
The term "circle of care" refers to the team of healthcare providers who support an individual's mental and physical health. In the field of mental health, this may include psychiatrists, psychologists, family doctors, social workers, case workers, and other health professionals.
For many with a serious mental illness, like schizophrenia, their family is a critical component of their "circle of care". Many parents care for their mentally ill child well into adulthood, providing emotional and financial support, as well as monitoring for signs of illness, ensuring medication compliance, and encouraging regular psychiatric follow-up.
For many families, providing support is highly stressful and exhausting. In one survey of 362 Torontonians who care for a person with schizophrenia, 65 per cent said they rarely or never have enough time off from care giving to enjoy their own activities. Yet parents often feel they are treated as interlopers by mental health providers, unwelcome to participate in discussions or decisions regarding their loved one.
Linda and Dave's 35-year-old son has schizophrenia. He lives with his parents at the moment but has had lengthy periods when he has lived independently. They have always supported Tom's wellness, driving him to his psychiatrist appointments, watching for signs of illness and reminding him to take his medications. They have repeatedly advocated for him, to help him access mental health care in the community, especially if he's acutely ill.
Tom had been living with a friend and was under the care of a community mental health team. Recently, Tom forgot to pick up his medication and within days he had escalating psychotic symptoms, including loud and aggressive auditory hallucinations. He threatened his roommate, he stopped eating and he was upsetting neighbours with his unusual behaviour. The roommate called Dave, who took Tom to hospital.
When Tom was discharged from hospital weeks later, he had to move back to his parent's home because his roommate refused to let him return. Linda and Dave hoped to get him a new independent living situation quickly, but before long the tell-tail signs of psychosis started to creep back, and he again required an urgent hospital admission. It was only then that his parents learned that Tom had been discharged from his mental health team. He was supposed to see his family doctor to monitor his illness and treatment. The trouble was no one had bothered to tell Dave, Linda or Tom's family doctor!
Tom's parents have tried to be included in his "circle of care" since he was diagnosed in his late teens. They are adamant they have no wish to attend all of his appointments or to know their son's personal information, like his sexual history. However, when they know he is getting sick, they'd like to be heard. And if he's discharged from a community mental health team or hospital, they'd like to be informed, especially if he's moving into their home.
Not every patient is fortunate enough to have a loving, engaged and supportive family that wants only wellness and independence for their child.
So why wouldn't mental health professionals want to talk to these families? Too often it is due to a misguided sense of the rules regarding confidentiality. Sometimes mental health care teams are over-extended and don't want to deal with the expectations of family members. Some still hold the damaging and completely discredited belief that families cause schizophrenia. Excluding family from important decision-making discussions leaves them frustrated and demoralized and is often not in the patient's best interest.
When a patient consents, there is no barrier to sharing appropriate information with their family. However, in a situation where a patient lacks insight, represents a risk to themselves or others, and refuses to consent to allow information to be shared, the risks of harm should outweigh the right to confidentiality.
An excellent 2015 article argued that,
"... legal and ethical duties to maintain confidentiality must be balanced against the duty to ensure the safety and well-being of patients and their families...clinicians should endeavor to promote the best interests of their patients even in situations that do not involve a risk of physical harm to self or others."
To avoid an ethical dilemma at a time of acute crisis, doctors should ask for consent to speak to a family when they first engage with a patient. If a patient were to refuse, it's important to explore why and to explain the value of including their family. Judgment must be exercised, and patients reassured that sensitive personal information will remain confidential.
Mental health care providers must establish a more inclusive, reasonable approach and include supportive families within the circle of care. They must negotiate with patients and their families if they want to achieve the best outcomes.
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