Tuesday, December 11, 2012

Patient advocacy for parents

I had an e-mail recently. A daughter, living in a different city from her parents, felt that her mother was not on top of her medical issues, including her meds. She wanted me to tell her of an agency that would advocate for her mother.
Daughters feel this. They know when parents are in denial. We know that early diagnosis of many chronic issues is an important part of health.

This is why I found a new job, moved 400 km closer to my parents, and changed my life. Statistics tell us the 1 in 5 daughters are caring for a family member. We are often responsible for the physiological, psychological and emotional issues, helping them with their activities of daily living (ADLs - groceries, house cleaning, banking, laundry, getting to medical appointments). In fact, an inability to care for oneself is a major indicator of life change.

What can you do if you know your mother cannot hear her doctor very well, refuses hearing aids, and misses out on the major discussions on medications and test results?
What if your father, quite capable in the past, suddenly doesn't seem to be making adult decisions and you fear dementia?

Patient Advocates
I have long held the opinion that seniors need Patient Advocates.
Many believe they must be nurses, much like Ontario's CCAC Case Managers, but they are government employees, on strict budgets. Besides this, while nurses are quite capable of interpreting physician-speak and those dreaded protocols of which doctors are quite facile, nurses do not necessarily know what the patient does not know. Much better, I believe, to have a trained volunteer who can ask the questions a patient needs answered as a peer.

Where to go for help

 I have written about the Patient Advocates available through various agencies. See:

Patient Navigation System

The Ontario Alzheimer's Society provides a First Link® advocacy program  (search for First Link in your region - it is an international initiative). The Cancer Society will give similar support, including volunteer drivers, peer support, and finding you peer-reviewed data about treatment side effects.

Open Arms Patient Advocacy Society (Alberta)

The Advocacy Centre for the Elderly (ACEis a Toronto community-based legal clinic for low income senior citizens. ACE is managed by a volunteer board of directors at least half of whom are seniors. ACE is funded through Legal Aid Ontario and is the first legal clinic in Canada to specialize in the legal problems of seniors.

See also: 211ontario.ca
Toronto offers a 311 number for help, as do other cities: Winnipeg 311 Online.

While patient advocacy groups have been spear-headed by those who have had issues with Primary Care, complaints, or alleged misdiagnosis or mistreatment, all of us benefit from a loved one accompanying us to doctor's appointments, and being a critical extra set of ears. If you live far away, CCAC agencies can point you in the direction of community home support services who provide trained volunteers.

My paraplegic friend, Michele.
 I would accompany her to appointments in an ambulance.
Specifically, look for a local, Ontario, CCAC community home support office in Ontario.
Request that the Case Manager find the office that coordinates these services.  Government-funded agency that delivers many services at low-cost or free to clients. You can refer anyone to these Ontario services 211.
You can purchase the services of for-profit agencies who will fulfill such personnel requirements. I will not refer any here.

What a Volunteer Patient Advocate Can Do

When a physician presents test results, we may be overwhelmed. When a physician presents treatment options, side effects of such treatments, and a treatment plan, we may have been frozen by the first piece of information. As a volunteer, as well as a wife, I have travelled with clients into such appointments. While we travel to the appointment, I prepare the client with three questions s/he wants to ask the doctor. Then, as the doctors speaks, I take careful notes. You find, when you write something down, that you are better able to digest it and determine if further clarification is required at the time, or later on. If I do not understand it, then likely the patient does not understand it, either.

  • Questions to ask your physician

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