By Kathleen Mochnacki
Surveys to obtain information from family caregivers of those with severe mental illnesses can provide an opportunity to get genuinely useful information about significant problems that family caregivers encounter in trying to get appropriate help for their family members or themselves
Such surveys need to recognize how the lack of appropriate mental health services affects our loved ones, how unrealistic mental health legislation affects whether our family members gets treatment or not and the attitudinal barriers that can prevent needed communication between mental health professionals and family caregivers.
Family caregivers of those with severe mental illnesses are a unique community who have experienced first hand what it is like to live under the same roof as a family member with a severe mental illness. Dr. E. Fuller Torrey founder of the Treatment Advocacy Center has said that the only people that know about psychosis are the person with the psychotic illness or a person who lives under the same roof. He had a sister who had schizophrenia. Sadly, when mental health services are planned, we are not consulted and costly mistakes are made.
Not much attention is given to the fact that many homeless people have untreated mental illness. Currently, York Region has engaged York University to conduct research in York Region Ontario. The goal of this research is to include the engagement of community residents/groups, faith-based organizations, service providers, and government representatives to identify important and feasible strategies to support mental well-being of residents in York Region.
My son lives in one of the areas selected for this research. This area includes a drop in for homeless people with mental illness, an encampment, transitional housing for homeless youth, both supportive and supported housing for people with a mental illness, and not for profit and co-operative housing. Drug activity is rampant. Many drug users have untreated severe mental illness. Reliable witnesses have observed people walking around in full psychosis. The local bank locks its doors at night to prevent homeless youth from sleeping in the area where bank machines are.
Yet there is not a word of this reality in the draft of the project which was presented on February 28th. I did bring this to the attention of the researcher who did listen. I also expressed my fervent wish that there be effective communication between our hospitals and community agencies when discharging patients with severe mental illnesses so that there is a smoother transition when people are discharged to community agencies. Family caregivers often have to straddle the divide between hospital and community waiting for the community agency to do an assessment on their recently discharged family member. I was grateful to the researcher for her gracious attention to my input and pray that that my observations will be included in the final draft.
I am not alone in my observations. Marilyn Baker, a mother of a son with schizophrenia, experienced the horror of her son being discharged in the middle of the night during freezing weather from a Toronto Hospital. She states: “This was when I learned that our mental healthcare system is a cruel joke – a patchwork quilt of people not talking to other people”. She exclaims: “No one is ever charged with negligence or failing to provide the necessities of life. These are just the mentally ill. They do not count”. (Readers are invited to read Marilyn’s blog which appeared earlier in this space).
Susan Inman, author and mother of a daughter with schizophrenia, suggested the following questions for future surveys in the hopes that the answers would support the need for systemic changes:
- Would improved public mental illness literacy campaigns have helped you better manage your family members emerging severe mental illness? Would these kinds of campaigns help you now in interactions with a wide variety of people?
- To what degree were various clinicians helpful when you reached out for help?
- Were some interactions with professionals more harmful than helpful – if so, in what ways?
- What kinds of gaps in services do you see?
- Did your family member have adequate psycho-education about their illness? If not, did this lack of information impact their ability to accept, adjust to and learn to better manage their illness?
- Did your family member receive any messages within the delivery of mental health services that undermined their belief in the value of medically based treatments? What were these messages and how were they delivered?
- Do you know that the current national curriculum on training peer support workers doesn’t include any information about disorders like schizophrenia?
- Do you think that knowledge about this disorder would help peer workers provide better help?
- Did you know that the current training emphasizes that people must also choose if they want any treatment in order to “recover”?
- Do you think that differently trained peer workers could help people come to a better understanding of involuntary treatment they may have received?
- Discuss your experience with peer workers.
- How helpful were any system-supplied family support workers with whom you had contact?
- Have you been concerned about the trend to combine programs and supported living for people with just a severe mental illness with those who are struggling with a concurrent disorder?
- Have you been in contact with service providers who didn’t seem to have an adequate knowledge base about schizophrenia?
- Did your service providers educate you or your family member about common cognitive losses associated with schizophrenia?
Susan also mentions the important evidence supporting the use of trained family care givers who deliver psycho-education to families in the NAMI created Family to Family programs in reducing relapses and in improving families well-being.
Family caregivers need to take part in research design to really capture the reality of the world that we live in. If we were to be involved in creating questions that would reflect the gaps in the system, then it may help bring around much needed changes that would really help our loved ones with serious mental Illnesses. It would be wonderful if Academia could make use of our expertise. If they did, we would have a mental health system that would be more efficient in helping our family members.
Mind You Reflections on mental illness, mental health and life 
Gosh, you have covered all bases Kathleen. Families are forced to tread very carefully when opening up about their loved one’s mental illness. One of the factors is of course whether the family member does not want the world to know. And sometimes it takes time for the family member who is afflicted to open up. Sometimes decades.
When I first joined Friends of Schizophrenics in 1980, I was viewed with suspicion. The families thought that I could not possibly understand their plight. Gradually they did trust me, and I became their spokesperson. We did a great job in public education and family support in Kingston. It was much easier for me too speak out, because at that time I did not have a near-family member with a serious mental illness. Things would change! Some of the things that have been said to me by those who should know better have been infuriating and shocking.
Some decades later, one of my children presented with Bipolar 1 Disorder. I was truly in those families’ shoes. As they say, one truly understands when one has to walk in those shoes. Heart breaking. I have a lot to say on this subject and much to say about some of the things that were inappropriately said by so-called professionals to my loved one, when she was very ill. One idiot tampered with her lithium (questioning the diagnosis). This psychiatrist also questioned my daughter’s name, perhaps to provoke her, since at that time she was depressed and withdrawn. She told my daughter that her first name did not suite her. Imagine questioning identity at that time !!!! Of course there was a total relapse and hospitalization. I was able to challenge that bad manoeuvre, but perhaps the matter should have been taken further.
My daughter had a pretty good workup initially by a hospital team, without hospitalization, and was properly diagnosed and, after the incident described here, she has had excellent psychiatrists. But it has been a very long journey, and I doubt that I would have been able to be so outspoken had I been coping with a very ill person at home in the nineteen eighties and nineties.
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Sadly most of this information is and has been well documented on this Blog for which I’m very grateful as a caregiver. However, nothing has happened to bring about much needed reforms. Our Country lags behind other developed ones Globally.
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Yes—a questionnaire, multiple choice and short answer, to pinpoint unmet needs of patients, families, and professionals—potentially for EVERY encounter.
A survey-questionnaire, always available, when a therapeutic relationship begins, and an alternate form available and not discouraged, after every encounter. A survey-questionnaire will curtail the work of health professions’ colleges, who can only ask the professionals themselves, the experts in any encounter. “My work met a high standard under the circumstances.” So that a final report on a file (inquiry, complaint) concludes, by their own admission, “Health care professional met or exceeded all standards of care. File closed.”
Their patient died based on the encounter(s). “Oh. Are you receiving help?” I don’t need help—I need confidence these are not Standard Operating Procedures and that authorities will report to everyone, all stakeholders, professionals and prospective patients, so that better outcomes result from BETTER guidelines? “Oh, I see. However, they, the health professional in the circumstances, determine standards—though legislation prevents helping people, that will never change.” “Next please.”
She wasn’t disabled, she was ill, with a known, treatable illness (“no it isn’t,” yes it IS), three times SPH successfully treated episodes; but then, perhaps as a cost-savings, apparently philosophy became, It is a personal decision to be ill and not well—which means intervention is unnecessary—tired of the work or having seen individuals who apparently COULD cure yourself, health professionals place their bets.
Kathleen Mochnacki, you have noted EVERY issue evident in our daughter’s treatment, discharges, and subsequent death. At least a couple of “Discharge against medical advice,” SHE tearfully thought someone knowledgable would stop her; they apparently thought, “She is intelligent and articulate, willful and not ill; it’s “her” decision,” under the influence of confusion, fear, disordered thoughts and irresistible behaviours.
Health care professionals KNOW? And feel they cannot act on their patients’ behalf—because provincial legislation says: 1. A mental health patient makes “their own” uninfluenced decisions, as if that were true; 2. Not to inform near-relatives of nature of disease, nor fraught nature of discharge. Long-term supporters (different from 4-walls health professionals and staff), imagine a person is discharged only when they are safe and better.
Mental health, (e.g., eating disorders, anxiety at its core), gets much worse if intervention is abruptly curtailed—health professionals know or, particularly NOW, ought to be informed to know—illustrated by this case, such cases—except legislation says such otherwise educational opportunities are “confidential”—convenient except for when asking for more funding—which must present a conundrum about admitting uninformed catastrophic outcomes?
She suffered, unable to articulate her need for capable informed care and treatment (ineloquent, mute on the subject, a symptom), once they are kicked-out for apparently being unwilling to follow directions to finish a meal (a symptom, apparently health professionals do not automatically intuit a disease’s symptoms) and they died, die, in public housing where health professionals put them—convenient to grocery stores, retail jobs, and BC’s largest hospitals, as if sufficient as follow-up, treatment, and care.
Julie, Gemma, Erin, with no follow up—“Discharge Plan” (on discharge report is list of follow-up, looks good in print, but no apparent effort was or is invested to act on steps in a mental health patient’s Discharge Plan), but ashamed, blamed, for not hiding symptoms, expressing fear and doubt about ability to recover—gets a person shown the door, “See you when “you” are ready.” Christina died on a palliative ward because there was no informed help, “You decide,” whether to eat. “I can’t.” “That’s your decision.”
Mothers, without being indoctrinated about tantrum qualities—distress that causes reflexive fight, flight, or freeze, clears up, forgotten, when rested and refuelled; it takes time, unconditional support, and rigid parameters of a program of care and treatment for refuelling and rest. Potential long-term supporters don’t automatically know about the nature of the disease.
Someone knowledgable needs to know that knowledgable professionals need to indoctrinate supporters—about how to care for a person abruptly discharged due to symptoms, including telling someone that a vulnerable person, a lived-one, has been discharged to their own care under fraught circumstances.
Patients with eating disorders effectively WORK themselves to death.
Health professionals are compensated for knowing their patient, their disease, and their circumstances—but efficiencies, production, “Spit-spot, hurry up, we need that bed”?
Patients under the influence of known brain disease, if they break an arbitrary institutional rule (must exhibit no symptoms), get “Discharged AMA,” “against medical advice,” a physician says “the laws say,” a physician, alone in a decision to discharge (a 2nd signature, a colleague, is required, based on recommendation), must ignore their own diagnosis and awareness of their patient’s prognosis, and not tell anyone due to patient confidentiality.
“Discharged” says someone else becomes responsible, while “they” (circuitously) rely on the specialist psychiatrist to inform them (for instance underlining all characterizations within discharge plan for “vulnerable,” “mental health” patient). Instead the specialist, perhaps unwittingly, provide(s) the disorder with opportunity to thrive without effective follow-up.
I have a sense her specialists and community care professionals were personally surprised to eventually find out former patients predictably died. Serendipity, told, they would not otherwise have found out, just a dormant file, eventually closed, assumption a patient is maybe fine or being seen elsewhere by someone.
The colleges do not find fault, could not publish recommendations to create guidelines for care. Including this idea, for a survey-questionnaire. “Finding findings” is a waste because what is learned is not available, scrutinized or utilized, as if confidentiality is best for the dead and for continuing practices.
Guidelines, measurable indications of need (e.g., for urgent or enduring supportive care) are absent, no protocols. Everyone is regularly compensated to make-it-up as they go, depending how they feel—“Noise,” Kahneman, says best decisions are made by decision-makers early in day, and worst decisions are late in day or just before mealtime, measured, true. Decisions by single decision-maker(s) with no written checklist or GUIDELINES for reliable decisions are luck, good and bad.
Develop a formal, always available, questionnaire for all patients and professionals for any therapeutic encounter—with objective to improve understanding, encounters, and outcomes. Develop guidelines, where at least 2 independent knowledgable people, guided, agree, based on guidelines, what to do for a patient.
Health professions’ colleges seem only able to rubber-stamp what the professionals judge about their own decisions, because THEY are the experts that work, “within constraints of legislation,” rather than being given ability to work in best interests of any patient.
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CORRECTED copy. Paragraph 11 should say: “Someone knowledgable needs to know that knowledgable professionals need to indoctrinate supporters—about how to care for a person abruptly discharged due to symptoms, including telling someone that a vulnerable person, a loved-one, has been discharged to their own care under fraught circumstances.”
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