A family member was concerned about their elderly sister who is a widow and lives in a long-term care home that is a four-hour drive from family and friends.
Because of this far distance family members, who were mostly seniors with health conditions, could only travel to visit their sister a few times a year. The family was distressed that their sister would die alone amongst strangers.
The sister was on a waiting list to transfer to a long-term care home closer to family, but had been waiting for many months. The family contacted the LHIN in the sister’s region to complain about the long wait. The message they heard from the LHIN was that their sister is not a priority as she already lives in a long-term care home – even though it is far away.
What we did
The Patient Ombudsman contacted both the LHIN in the sister’s region and the LHIN where the family lives. The LHIN in the sister’s region confirmed they were following the regulations guiding priority for placement, but acknowledged that the family could have interpreted their message to mean that their loved one wasn’t a priority. The two LHINs confirmed that they would work together to coordinate the sister’s transfer of care. The LHIN in the family’s region suggested that they consider two local homes with relatively short waiting lists. The family agreed and their sister is currently next on the list for both homes.
Making the decision to move to a long-term care home can be challenging and emotional for patients and their families. The process is complicated, wait times are long and choices are made at times of high stress. As Ontario’s long-term care home placement coordinators, Local Health Integration Networks (LHINs) are responsible for managing the complex placement process fairly, and explaining it to patients and their caregivers.
In our second year, 17% of the 223 complaints Patient Ombudsman received about home and community care were about challenges patients and families were experiencing with long-term care home placement. In addition, 18 complaints about public hospitals involved concerns with long-term care home placement.
While the complaints covered a range of issues – frustration with wait times, disagreements about patients’ capacity for placement decisions, discharge planning from hospitals, and others – the root cause of a significant number of the complaints was miscommunication.
Patients and families often reported that they didn’t understand or trust the process or the reasons for decisions. Sometimes they received different messages from different care providers, particularly when patients were seeking a long-term care home placement while in hospital. All of these things impact patients’ and families’ ability to trust that they are being treated fairly and that their providers are focused on their best interests. Without thoughtful consideration of how a message is expressed, it is not hard to imagine how an explanation about a person’s relative priority on a waiting list could be heard as “your loved one isn’t a priority”.
Tips for patients and caregivers
- If you’re making decisions about long-term care home placement, don’t be afraid to ask questions or ask for information in writing so you can review it later
- If you’re getting conflicting messages, for example the hospital and the LHIN are saying different things, ask to meet with both together
- Accurately predicting wait times for a long-term care home bed is practically impossible. LHINs can provide estimates, but a variety of factors can affect how long you actually wait. Ask your care coordinator to keep you informed and if they have suggestions to reduce your wait time
Suggestions for LHIN Home and Community Care
- Review the information available to families and the public to ensure the waiting list process for long-term care home placement is as clear as possible, given its complexity
- Ensure patients and caregivers know who to contact if they have questions or concerns. Make sure they know how to escalate their concerns if they’re not satisfied with the information they are receiving
- Establish clear communications protocols with hospitals to ensure that patients and caregivers don’t receive conflicting messages about long-term care placement
- Make sure communications with patients and families are focused on them and their needs, not just the rules