Households want to offer extra medical care at residence, however with little coaching

Woman helping her elderly mother at home.


More than ever, family members must play an important role in caring for their loved ones. But they are being asked to perform increasingly complex medical tasks with little or no training. The result: higher risk for patients and enormous, avoidable stress for caregivers.

A new study attempts to identify the barriers to good nursing education. And it turns out to be like that old Agatha Christie novel Murder on the Orient Express; Everyone made it. The barriers infect the entire system.

The study, by Julia Burgdorf of the Visiting Nurse Service of New York and co-authors, examined home nursing after hospital discharge. But many of his conclusions probably apply to long-term home care as well. In both cases, family members have to perform tasks that they simply do not know how to perform. And often, when done incorrectly, this work is dangerous for both the caregivers and those caring for them.


Imagine changing dressings after surgery, keeping a port or drain sterile, or managing oxygen machines or other medical equipment. If you get it wrong, a patient could easily demand a trip to the ER, a readmission to the hospital, or worse.

When it comes to personal hygiene, imagine helping someone bathe or go back and forth to the toilet. If you screw this up, a loved one could fall and end up in the emergency room.

To avoid these consequences, Medicare requires hospitals and home health services to train family caregivers (you probably didn’t know this). But it usually doesn’t pay off. And most states have passed the Caregiver Advise, Record, and Enable (CAR AR E) Act, which requires hospitals to identify and train caregivers.

However, many family members are unlikely to be trained at all. And half say the training they receive is either insufficient or inappropriate. If caregivers are black or have low incomes, their chances of getting an education are even lower.

To understand what’s happening, Burgdorf and her colleagues asked nurses and therapists at the ambulatory health agency why the system is so broken. The agencies were rural and urban, for-profit and not-for-profit, and local, regional and national companies. Here are some of the issues they identified:

Bad communication between hospitals and home care workers and between hospitals and families. This is another example of the larger, long-standing communication mess when patients are discharged. Hospital administrators have known for years the dangers of garbled communications when moving patients—even within a hospital. It’s worse when they go home.

A major challenge: the dismissal is often hasty. Payers, including Medicare, are encouraging hospitals to discharge patients as quickly as possible. And patients and their families just want to go home. In this situation, this all-important training never gets much further than an incomprehensible written description stuffed into a stack of papers given to a patient upon discharge.

There is a solution: Training could start as soon as a patient is admitted. Hospitals could complement hands-on training with video—a vast improvement over the mindless, TV-bored patients who typically watch from their hospital beds. Some hospitals do this. Many don’t.

The discharge problems never seem to get fixed. And relatives often do not know what to do when the patient comes home.

Strict rules of the payers, including Medicare and private insurance, limit the flexibility homecare nurses need to train family members. For example, payers often limit the number of home care visits. There are good reasons for it. Without these restrictions, some unscrupulous vendors would charge for bottomless visits.

But these limitations often limit the time nurses have to teach. They go to the home, do their clinical work and leave. The right nursing training is left behind. Or it becomes little more than superficial.

Anyone who has attempted to do this clinical work — say, sterilize a port — knows that you cannot simply tell you what to do or give you a piece of paper describing it. You actually have to do it, with an expert who will closely monitor and correct your mistakes. And that takes time.

Bad communication. This also includes good communication. And home care nurses and therapists acknowledged that they find it difficult to explain clinical information to family members. Clinicians must be trained to have such conversations. And that costs time and money.

The survey also describes how important these conversations can be when family dynamics become complicated. For example, what do you do when a patient doesn’t want a spouse or adult child to change their dressing?

Covid19. Not surprisingly, the study also found how the challenges of training family carers have been exacerbated by Covid.

The list is long, but it includes: sick patients being cared for at home because they are unwilling to seek care in a qualified care facility, the restrictions on family visits to patients in the hospital that limit training opportunities, and the tremendous challenges that are associated with masked exercise.

It is inevitable that family members will be asked to provide more and more complex care services as more post-hospital care is shifted to the home. And without the necessary training, it is inevitable that patient outcomes will deteriorate and the cost of the system will increase.

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