Caregivers Have a Right to Resist Performing Medical Tasks

If you compare our lives in 2018 to 25 years ago, it is stunning how much work has been outsourced to us as consumers. We scan our own groceries; we pump and pay for our own gas; we check in for our flights and place luggage tags on our bags; we set up usernames and passwords for a single transaction then promptly forget them and spend time to re-verify them the next time we need to conduct business on that website; we endure long waits on hold in endless phone tree loops to address complicated problems that can’t be handled online. All of these tasks used to be handled for us by the company providing the service. It seems as if customers have now become unpaid employees in many cases.

When this carries over to healthcare

And nowhere is this more critical than in healthcare, where caregivers are now routinely asked to perform medical tasks at home.

When my first husband, Ahmad, was sick with bladder cancer, I realized that significant work is also outsourced to caregivers. We were sent home from the hospital – more than once – with instructions on how to give certain injections or manage an IV or a catheter. These are serious medical tasks but it is common for people to be sent home after brief instructions on how to manage these things themselves.

Required to give daily shots

After a 10-day hospitalization (five days in the ICU) for deep vein thrombosis (blood clots) related to starting chemotherapy, my husband was discharged and I was told that I would need to give him daily Lovenox shots as a “bridge” in transitioning from one blood thinner to another.

I hate needles, I hate shots, and until about 15 years ago, I could not have a routine blood draw without automatically bursting into tears just from entering the lab. In short, I’m not exactly the ideal candidate for a nursing career. And not the best person to give shots to anyone.

A complex regiment of medications

In addition to shots, we were sent home with a complex regimen of opioids to manage that included a Fentanyl patch, a long-term oral pain medication as well as a short-term pain medication for “breakthrough” pain. The Fentanyl patch would last for two or three days depending on whether it received direct contact from hot water in a shower. The short-term pain med was to be taken as needed so it wasn’t on a set schedule.

The difficulty of managing these details

It is difficult to convey how challenging it is for a spousal or family caregiver to manage the details of complicated medical orders such as these. I set up a whiteboard on which I wrote each dose and its timing. I then photographed the board at the end of each day so that I had a record of prior days for when we were inevitably asked how often he had taken each drug and in what dose.

Caregivers need more support

I believe the medical system needs to do more – much more – to support caregivers if they are expected to perform medical tasks. Twenty-five years ago, I think the patient would have simply remained in the hospital where a nurse would have performed those tasks. Today, hospitals will send patients home and expect the caregiver to aid in these medical tasks. No one ever asks whether the caregiver is capable of handling the tasks and even if she (it’s so often a she) is, whether she can perform them on the required schedule. Or does she, perhaps, have other demands on her time (a job, children, her own self-care)?

Adjusting expectations and resisting demands

I, at times, resisted the seeming nonchalant “we’re going to release him but you’ll need to do these various tasks at home.” I wanted to help, but I am not a nurse and don’t believe I should be expected to be one. Nor should any other caregiver.