As our population ages, more people are faced with caring for an elderly family member who wishes to remain at home despite their complex health and personal care needs. A few years ago, I wrote an article about the proliferation of healthcare coordinators, navigators, and community care coordinators trying to help patients and their caregivers cope with transitioning to care in the home. The proliferation continues. More people want to age in place at home, but families are increasingly facing the challenge of who coordinates the coordinators.
Some estate planning advisors encourage clients to think about planning for care in their last decades. Older clients respond that they want to ‘age in place’ at home. After seeing the impact of the COVID-19 pandemic (during 2020-2021), where 9 out of 10 deaths in people over the age of 65 years were attributed to COVID, many older people have concluded that they wish to remain in their own homes and not move to congregate settings such as retirement homes or long-term care.
But what does it take to ‘age in place’ if you have complicated health care and personal care needs? Clients and their families report that their biggest challenges are disjointed and uncoordinated care, not knowing who to call and when, and a lack of effective communication with healthcare providers. For example, a 90-year-old aunt may have mental health issues combined with diminished capacity from Alzheimer’s. She has congestive heart failure and high blood pressure and increasingly forgets to take her medications. She insists on living alone, and at least a few times per week, she initiates 911 calls due to shortness of breath. She is admitted to the hospital to stabilize her medical situation, is seen by various specialists who change her medications and is then discharged home. And the same scenario happens every few months.
When an elderly person moves from an acute care setting in hospital to their home setting, the transition can often be a difficult one. One would expect that everyone’s focus should be to organize care around the person to assist in an easy transition, but that is not necessarily the case.
Common Transition Issues Moving from Hospital to Home:
- The family doctor is often not aware of different medications prescribed by the various hospital specialists that might be involved. About 86% of Canadian family doctors use Electronic Medical Records (EMRs) but interoperability or sharing information from one system to another is limited, and patients have very limited access to their own records (about 5%) compared to international benchmarks. 
- The hospital sets a discharge date even though the family caregivers may not be aware of the level of care that will be required at home and have not been consulted. A paradox often seen is that family caregivers are not included or consulted by the health care providers yet on discharge, they have complete responsibility for the patient.
- A nurse working with one of the numerous medical specialists organizes follow-up appointments, but no family member can take their parent on those dates, so the appointments are cancelled. Trying to get new appointments may cause substantial delays.
- A discharge planning coordinator recommends the elderly person needs long-term care, but the waiting list is four years in that community unless you are in crisis – so what do you do in the meantime? The discharge planning coordinator refers you to the Home and Community Care Support Services (HCCSS) case manager in your area, who will discuss long-term care applications and home care services in the home. The HCCSS care manager creates individualized care plans based on their services.
- The family learns that the older person is only eligible for seven hours of home care per week, but the family members work, so they will need to top up services with private home care services, which can be costly. The private home care company assigns their own care coordinator for additional home care services.
Trying to coordinate the coordinators creates stress for elderly patients and their families, who spend extraordinary amounts of time trying to sort out the confusing matrix of health services, providers, and options for care. Each coordinator will attempt to create an individualized care plan, but the reality is that it is the family who becomes the de facto care coordinator and manager. The lack of coordination can also trigger a domino effect with a cascading set of factors to manage – from financial to changing living circumstances to quality-of-life considerations. Many families or attorneys for personal care simply do not have the time or expertise to manage these ‘care in the home’ situations.
Further complications arise if the family members and/or attorneys disagree on topics such as how to provide care, who should be providing the care, the cost of care, and who is managing the various coordinators.
‘Aging in place’ at home with complex care needs requires careful planning and an integrated and comprehensive approach involving multiple stakeholders. This is a multifaceted topic and can result in rings of complexity that need to be effectively managed. Future blogs will address various challenges and explore potential solutions.