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Your health care experiences reveal authentic patient priorities, including

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  • Ways to improve the patient experience
February 2014
A lot of confusion, few solutions
Feb 25, 2014 10:46 AM

I have been looking after an elderly friend since Dec 25, 2013 when her husband was hospitalized. He is currently a patient in a hospital in downtown Toronto. I was with both of them in the emergency room in August 2012. He was admitted and she was 'formed' as 'a danger to herself.' They were discharged together. He has been her 'brain' and she has been his 'legs.'

Once again he is hospitalized and she is on her own - very confused, no short term memory, drugged, and much worse. I have been checking on her and taking her one meal every day - none of which she remembers. We have lived in the same condo building for more than 20 years. She has called me several times asking if I know where her husband is and what the date is. Her children are dead. Her in-laws were away. When her daughter-in-law returned from vacation she found by coincidence that there was a caregiver who came 'regularly', but unfortunately the daughter-in-law did not immediately share the contact information for the caregiver. I have it now - someone through the Community Care Access Centre. Our condo manager and superintendents know nothing of any caregiver coming in and the lady herself has no memory of a caregiver.

I called the hospital today hoping to speak to the husband - I wanted to find out if he knew who the caregiver was. It took 25 minutes as I was passed from one person to another, 5 people in total, all who all said they could not give me any information ( I learnt that the husband was incoherent at the moment). The last person I spoke to was a social worker and I explained my concerns to her, including the fact that people in our building are worried that the lady might leave her stove on, among other things. Her fridge is often full of rotting food. The social worker, of course, could give me no information but told me to call the police if anything happened or if the lady started wandering. I got the impression she would contact the caregiver and we left it at that.

The social worker called the care coordinator who called the client and found the line busy. She then called two family members and got recorded messages. She then called 911 instead of calling the condo office even though the condo office phone number is easy to find on the internet. It seems the care coordinator heard only 'burn the house down' when the social worker told her a neighbour had called with various concerns. True, many in the condo worry about a fire hazard from a stove left on.

Is this an over-reaction, poor communication, or poor English? What a waste of resources!

What we learned:

1. The names and activities of caregivers, involved neighbours, social workers should be recorded and available to all in a diary in the home of the elderly patient
2. The privacy considerations should not inhibit effective communication that helps the patient
3. The criteria should be “what is best for the patients well-being”, not just “we cannot give out that information”

All stories, All patient stories, Patient-provider relationship, Degenerative disorder  



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