Here is an ongoing situation where no one but the lawyer suggested to the patient by Legal Aid believes the patient is capable of making his own healthcare decisions. Unfortunately, the legal system risks conflict of interest in cases such as these. Below is an exceptionally clear letter provided by the patient’s daughter. I am sorry to report that she has heard from none of the addressees yet. I have extracted personal identifiers.
I’m hoping this can lead to at least some educational outreach for Legal Aid. Maybe that’s a reasonable place to start? Alzheimer’s Society, what say you?
May 23, 2014
Lieutenant Governor in Council, The Honourable David C. Onley
Ontario Ombudsman, Andre Marin
Minister of Health & Long-Term Care, Deb Matthews
Ministry of Health & Long-Term Care, Legal Services Director, Janice Crawford
Ministry of the Attorney General, Madeleine Meilleur
Psychiatric Patient Advocate Office, Susan Picarello
Medical Officer of Health for Ontario, Dr. Arlene King
Dr. Marc Gabel, Council President, The College of Physicians and Surgeons of Ontario
Ontario Long-Term Care Association
Re: Outcome – Consent and Capacity Board Hearing for [patient], May 6, 2014
I am writing to you to request your assistance to require the Consent and Capacity Board of Ontario “CCB” to order a new Capacity Assessment for my father, [patient]. Although he was found capable on May 6, 2014 by the Board, I can assure you that his condition, Progressive Supranuclear Palsy, has rendered him incapable of caring for himself. Outlined below is a brief synopsis of the recent history associated with a man that has been stricken with a debilitating disease and a family that now finds themselves helpless to provide care to him all thanks to the Consent and Capacity Board of Ontario.
In October 2013, Dr. Tiffany Chow, Associate Professor of Neurology and Geriatric Psychiatry at the University of Toronto, and Senior Clinician-Scientist at Baycrest Health Sciences diagnosed my ailing father with Progressive Supranuclear Palsy. Progressive Supranuclear Palsy (PSP) is a rare brain disorder that causes serious and progressive problems with control of gait and balance, along with complex eye movement and thinking problems. One of the classic signs of the disease is an inability to aim the eyes properly, which occurs because of lesions in the area of the brain that coordinates eye movements. Affected individuals often show alterations of mood and behaviour, including depression and apathy as well as progressive mild dementia. The disorder’s long name indicates that the disease begins slowly and continues to get worse (progressive), and causes weakness (palsy) by damaging certain parts of the brain above pea-sized structures called nuclei that control eye movements (supranuclear).
After a crisis scenario in the family home in October 2013, my father was formed and institutionalized at the Bluewater Health Care facility in Sarnia, Ontario. In January 2014, almost three months later, he was relocated from the Psychiatric Unit to the Cognitive Care Unit of the hospital. The resident CCAC registered nurse completed a capacity test in mid January and my father was deemed once again to be incapable. Initially, he was assessed as incapable by the Toronto CCAC in September 2013. He was placed in a nursing home by our family in late January 2014.
Although caring for an ill family member has been extremely challenging for our family, the doctors and nurses at Baycrest and Bluewater have been supportive and helpful in advising us and helping us to make the appropriate decisions for my father’s required ongoing care. It is obvious to those who meet my dad that he is not well. His blank expressions, the gaze of someone not completely engaged in his environment and his lack of mobility and falls are telling signs. I suppose his mumbled speech is the reason that his lawyer, appointed by Legal Aid, did not allow him to speak at his own hearing. He has always been a kind and loving man but his illness now makes him aggressive and easily agitated. He suffers from symptoms associated with paranoia as well. It has been a long and sad road for our family but we have come to terms with his disease and have accepted his need for 24/7 care. He has not. He is in denial, and although we continue to explain his disease to him, he informs others that he has a bad foot and that he will be going home soon.
On May 6, 2014, the Consent and Capacity Board of Ontario determined that due to a “lack of meticulous note taking” by the CCAC Capacity Assessment Nurse, the finding of incapable was not sufficient and not being upheld. In a matter of a few short hours, at a hearing of 8 individuals, only one being from the medical community (the Blue Water CCAC Capacity Assessment Nurse that rendered the finding of incapable in January) all the medical assessments, treatments and diagnosis were eliminated by a lawyer. There was no finding or request for a further capacity assessment or the call for a new medical opinion. The Consent and Capacity Board has since issued their finding, however, not to our family but to my ailing father, and now after 7 months of 24/7 care he is free to walk (with his walker I suppose) out the door of his locked down nursing home facility and into the community.
The members of the Board, particularly the chair, treated my family members with nothing but disrespect and rudeness. Although outlined on the Consent and Capacity Board website, family members, spouses and children, are deemed to be parties to a hearing, we were not even acknowledged. My mother is the named Power of Attorney and she was never even notified of the hearing by anyone on the Board and nor has she received notification of the results from anyone. The CCB Code of Conduct, available on their website, was certainly not well represented in this matter. I even question if the Board representation met the established requirements for a hearing. There was no psychiatrist named and two members of the public were, during the Board introductions. To date, we have been unsuccessful in obtaining a copy of the hearing decision; therefore, we can not be sure if the Board representation met the requirements. I am a public servant, and I am disgusted by the behaviour of the Chair of the Board.
Our family is sickened by the thought of what might happen to my dad now. Nobody in our family has the ability to provide the care that he requires. We have long struggled with accepting his condition and we thought we had taken all the necessary steps to place him in an excellent facility that could provide for his needs. Our family is in disbelief. We want to understand:
- How did this happen without the request of new capacity assessment by the CCB?
- What will become of my dad?
- How will he get the care he needs since nobody has requested any community care assistance on his behalf?
- Why did a lawyer with no understanding of my father’s condition decide his fate?
- Since when does the legal community over rule the medical community, without being fully represented, and when did the decisions of a loving and caring family become irrelevant?
- Will the Consent and Capacity Board of Ontario be held responsible for what might happen to my dad or for his interactions in the community? After all, they determined his capacity without ANY current medical information?
By virtue of the name of his disease anyone could recognize that in five months my dad’s illness has progressed. As a family we have reached out to every professional body we can think of to assist us in caring for my dad. My mom has talked to CCAC, the Bluewater and Baycrest Social Workers, the nursing home owner, staff and doctor, and so on. We feel as though we have come to dead end and that nobody can help us. We don’t want my father to experience another crisis situation and another trip to the psychiatric ward at the hospital; these things are not good for him in his condition. I am now appealing to you for your assistance. It seems that there is a definite flaw in the mandate and/or legislation associated with the Consent and Capacity Board of Ontario. I am proud to live in a country that upholds the rights of its citizens but my father’s situation is a prime example of how something that is intended to protect us has gone very wrong.
I look forward to your timely response. Please free to contact me at [phone number] if you have any questions.