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Stories About Personal Care Issues

Joan Plans for Her Future Health Care Needs

Joan is in her late fifties. During the past year she has been diagnosed with a debilitating condition that will affect her independence. She has become aware that the nature of her condition will require making decisions about treatments. Joan is finding that it is sometimes difficult to understand the information about her condition and to make decisions about required treatments. Joan has talked about this with the family, friends and paid caregivers in her support circle. She has decided to ask for help with making health care decisions by appointing one of her family members as her substitute decision-maker for health care decisions. This substitute decision-maker will be given authority by Joan and will be able to make decision on Joan’s behalf only when Joan is no longer able to do so for herself. The mechanism Joan will use is called the Power of Attorney for Personal Care.

Joan had initially thought she would like to appoint one of her favourite paid support workers to the role of substitute decision-maker for personal care. However when the support circle looked into it they discovered that the person could not be someone who is paid to provide the individual with health care, residential, social, training or support services unless the person is a spouse, partner or relative. Joan’s younger nephew was also ineligible to become a substitute decision-maker for personal care since he was younger than sixteen years of age.

Joan and her support circle gathered some information on the process of establishing a Power of Attorney. They learned that it was best to lay the groundwork for decision-making prior to identifying the substitute decision-maker. In this way Joan would be in a better position to know what she wanted the person to do and who would be best suited to the role.

The support circle scheduled a series of meetings to help Joan. At the first meeting they explored how Joan made her health care decisions. The group met a second time and asked Joan to talk about her beliefs, values and wishes so these could be known when a decision might be made on her behalf. A third meeting focused on having Joan identify the details of what she wanted a substitute decision-maker to do in the event that she could no longer make decisions herself. Then the group reviewed the various responsibilities that could be given and helped Joan decide which of these she wished to give to the substitute decision-maker for personal care. After this foundation was laid, Joan decided to appoint her older sister. Joan and her sister then made an appointment with the family lawyer to complete the Power of Attorney forms. While it was not a requirement to use a lawyer, the support circle felt this would be a good course of action since the lawyer, as an independent third party, could ensure the resulting legal document fully represented Joan’s wishes.

Joan’s Power of Attorney for Personal Care allowed the substitute decision-maker to make decisions related to health care, nutrition and safety. The scope of these decisions was fully defined in the Power of Attorney document. Joan could have also granted her older sister decision-making power related to shelter and clothing. However, Joan felt she would prefer to retain this decision-making power for herself. Joan continues to make her own health care decisions but involves her older sister more often in preparation for the day when Joan may be unable to decide for herself.

More information about the Power of Attorney for Personal Care can be found in this Guide: Section III B. – Personal Care: Power of Attorney For Personal Care.

Sarah Plans to Move From Her Group Home to a Long Term Care Home

Sarah lives in a group home with support from staff of the local developmental services provider. Over the years Sarah has faced a number of health issues. The agency has required that Sarah’s support worker provide guidance to her for health care decisions. In addition, the support worker has always attended medical appointments with her. This practice has been in place for more than thirty years.

At the age of 40, Sarah’s health care needs began to change. Her support worker noticed that the emerging health issues required additional support for Sarah. The agency accommodated these changes over the next ten years and then began to find they could no longer do so. After several discussions with Anne’s support circle, Anne decided she would move to a long term care home. The agency contacted the local CCAC for information about a move to a long term care home.

One of the pieces of information the CCAC required was the name of Sarah’s substitute decision-maker for health care decisions. The agency provided the name of Sarah’s principal support worker. The CCAC indicated that the support worker was not legally entitled to hold such a role and that Sarah would require a substitute decision-maker appointed under the Health Care Consent Act. The agency replied that the principal support worker did indeed fulfill such a role in accordance with agency policy and long-standing practice. The CCAC maintained its position and advised the agency that it could not complete the application process without a substitute decision-maker.

The developmental services provider investigated the provisions of the Health Care Consent Act and found that there was a list of possible substitute decision-makers who could be appointed, with the Guardian being at the top of the list. The agency advised the CCAC that it could be named a substitute decision-maker under the Act because the agency fulfilled the guardianship role for Sarah.

The CCAC refused to accept the agency’s interpretation of the Act and sent the agency’s Executive Director a letter outlining the legislative requirements that a substitute decision-maker be appointed under the Health Care Consent Act prior to admission. The CCAC correspondence noted that the Guardian could be a parent or legally appointed guardian but could not be a staff person of the developmental services agency. Finally, the letter advised the developmental services agency that if they were unable to identify a suitable substitute decision maker, the appointment could be handled by the Consent and Capacity Board that is authorised to appoint representatives to make decisions for an incapable person with respect to admission to a care facility.

The Executive Director discussed the matter with Sarah’s principal support worker. They agreed that it would be in keeping with their agency philosophy if Sarah was able to make the appointment rather then submitting the matter to the Consent and Capacity Board. Consequently, the Executive Director asked Sarah’s principal support worker to investigate who, could be appointed by Sarah as a substitute decision-maker. When the principal support worker investigated Sarah’s case file, she discovered that Sarah had no legally appointed guardian and had lost all contact with her parents when she had been placed in the Ontario government facility for people with a developmental disability at the age of five. However, Sarah had a close friend, Joanne, who was a member of Sarah’s support circle. The support worker thought Joanne might be a possible substitute decision-maker.

The support worker reported these findings to the Executive Director. The support worker was directed to investigate with Sarah whether she would accept Joanne as the SDM. If she did, then Sarah would have to establish a Power of Attorney for Personal Care as provided by the Ontario legislation. The person appointed to this role by Sarah could then be identified as the substitute decision-maker for health care as required under the Health Care Consent Act.

Agency staff found these legal requirements complicated and confusing. However, they facilitated the arrangements with Sarah in order to move her long term care home application through the process.

The Executive Director realized that his agency was out of step with the evolving legal requirements around SDM. He discussed the problem with the Program Director. A few weeks later, the Program Director arranged a training session for staff on substitute decision-making. A representative of the Advocacy Resource Centre for the Elderly provided training and distributed an information booklet. Over the next several months the agency began to review the requirements of legislation and regulations governing substitute decision-making. This review lead to an overhaul of agency policy and required additional staff training to help employees understand the resulting changes to their job responsibilities.

More information about appointing a substitute decision-maker under the Health Care Consent Act and the role of the Consent and Capacity Board can be found in this Guide: Section III D. -Consent and Capacity Board and Section III F. – Health Care: Requirements Under the Health Care Consent Act.

Community Living Service Provider Wants to be in the Communication Loop on Louanne’s Hospital Discharge

Louanne became seriously ill and entered hospital for an extended stay. The service provider operating the group home where Louanne lived kept her bed available so she could return homefollowing hospitalization. A couple of years earlier, Louanne had appointed her mother, Belinda, as Power of Attorney for Personal Care. Belinda was approached by the hospital for consent on some of Louanne’s health care decisions when Louanne was unable to provide consent herself. Belinda was suffering with a mental health problem that sometimes hampered her ability to focus on the consent process on behalf of her daughter. Consequently, Louanne’s brother became involved in communications from the hospital and provided help to his mother in exercising Louanne’s Power of Attorney for Personal Care.

The agency operating the group home discovered that Louanne’s discharge plan was proceeding and a discharge date was being considered. However, the agency had not received any communication from the hospital and Louanne’s brother was unaware of the agency’s support role with Louanne. The agency contacted Louanne’s mother but discovered she was unable to communicate clearly about the discharge plan. The agency became concerned that they would be unable to plan ahead for appropriate staffing and other support that Louanne would need when she returned to her home. Subsequently, the agency Program Director arranged a meeting of the hospital discharge staff with Louanne’s mother and brother. The discussion resulted in the discharge plan being shared with the agency and an agreement to include them in the communication loop.

Sourced from GUIDE TO PERSONAL CARE AND PROPERTY For Older Adults with a Developmental Disability , The Ontario Partnership on Aging and Developmental Disabilities, 2008

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