CARE for Cancer Caregivers

I can remember coming home from the hospital after my mastectomy with the drain hanging from my right breast. This is the same tube and bulb every other woman wears after surgery to collect the ooze and gunk from her healing breast wound. The tubing was pinned to the soft bra that they put on over the bandages. At the end of the tubing was a little plastic ball that filled with yuck from the breast — and it had to be emptied frequently.

To do this, my husband had to open the bulb and empty it into a little cup that had measurements on the side so he could record how much I was putting out. Then he had to strip the tubing before putting the plug back in the bulb. Sounds easy enough (if you know what the word “strip” means).

He wasn’t there when they showed me how to do it, so he has a few questions. Remember, I have just had a mastectomy a day after being told I could have a lumpectomy. But then they found tentacles and one large, malignant lymph node. So I was really paying attention when the nurse was going through the information about emptying the bulb (not).

My husband is also an engineer — enough said?

So, I came home yesterday and noticed the bulb was getting full. I called to him that we need to do this. I have already told him the basics.

His first question: Where is the little cup thing I am supposed to use to measure the stuff?

Answer: I think it’s in the bag of stuff they gave me when I left the hospital yesterday.

Question: Where is that?

Answer: I don’t know. LOOK AROUND.

Question: I found it. Can you come in the bathroom so I can do this?

Answer: OK

(Now I am sitting on the toilet)

Question: So, I am only supposed to empty and measure. Should I write it down?

Answer: I think that sounds like a good idea. How else will you know if it is going down?

Question: Is there a certain amount that is not good that would mean I need to call the doctor? (This man has a Ph.D. in computer science.)

Answer: I don’t know. I think it is just supposed to go down.

Question: Does it matter what color the stuff is? It seems to me if it is really red that says it is bleeding. Did she mention that?

Answer: No.

Question: OK. I have the plug out. Now what do I do?

Answer: Pour the stuff in the little cup.

Question: OK. I did, but I can see that there is more in the tubing. Doesn’t that count?

Answer: I don’t think it matters.

Question: But if they are measuring it by such small amounts, that stuff needs to be in the cup, too, right?

Answer: OK, so when you strip the tubing that is probably when it comes out, so go ahead and squeeze the ball and put the plug back in.

Question: What?

Answer: You do what is called stripping the tubing because that causes the stuff to come down the tube into the bubble. You do that by holding the tubing at the top tightly and then squeezing and pulling on the tubing all the way to the bubble. It should bring down some more of the stuff. So squeeze the bubble thingy and put...

Question: But I need to strip it first before I put the plug in, right?

Answer: That’s right.

Question: Do I add that to the stuff I just took out or do I wait and add it to the next batch?

Answer: I DON’T CARE.

Question: OK, don’t get mad at me, I just don’t want to hurt you and I want to do it right.

Answer: (I am now crying) I know honey, and thank you for helping me.

Question: You know I am not very good at this and I am really trying.

Answer: (Here comes the guilt. I am now crying harder) I know.

Question: If I was going to be doing this, why didn’t they show me what to do before we left the hospital?

Answer: Now that’s a really good question!

OK, you get my point. But my goal is the last question. Why didn’t someone show him how to strip a drain and how to change the bandages? We have a page of instructions, but most of these are written by medical staff who use jargon and cannot write directions very well. It’s like the instructions you get with a computer that start with “Turn the computer on.” They assume you know where the switch is.

And this was 30 years ago. Today’s outpatient cancer care is much more complicated with chemo ports and numerous other quasi medical care that caregivers are supposed to do. Why did it take this long for something like the Caregiver Advise, Record, Enable (CARE) Act to show up.

This act, developed by AARP, supports family caregivers to learn what they have to do to safely provide care when they leave the hospital with a loved one.

To determine exactly what was happening with this, AARP Public Policy Institute and the United Hospital Fund did an online survey of more than 1,500 family caregivers to determine what medical/nursing acts they were performing -- free of charge.

Some of what they determined was that half of family caregivers performed medical/nursing tasks for loved ones with chronic physical and cognitive conditions.

Seventy-five percent of caregivers who provided these tasks were managing complicated medications including intravenous fluids and injections.

More than a third of those in the survey wanted more training in wound care, and the majority said they were keeping their family member out of institutionalization by providing these tasks.

In short, caregivers of every age are completing complex medical and nursing tasks such as cleaning wounds, giving injections and managing multiple medications. And, they are doing this with little to no training, which can be downright dangerous.

Stories abound of medications given incorrectly and language issues are easy to find — even ones that resulted in death.

For example, look at the word once. In English it means one time but in Spanish it means 11. Give this medication once a day becomes give it 11 times a day.

What is amazing is that Medicare now financially penalizes hospitals for readmissions before 30 days, so it would seem that someone would have addressed this problem before now. But somehow the idea has remained that loving a person will be enough for someone to know how to do the things needed to keep them alive or to help them get better.

Today patients are sent home with complicated prescriptions to be managed as well as special diets. Cancer patients have ports that have to be cleaned and myriad prescriptions that may have to be taken at different times. For older people who have comorbidities (read other medical problems besides cancer) they can already be on medication that can’t be mixed with other medication. ARRRRGGHHHH.

This care may be for months with no respite care for the caregiver, who lives in fear of doing something wrong.

The CARE Act has three important parts:

1. The name of the family caregiver is recorded when a loved one is admitted into a hospital or rehab facility.

2. The family caregiver is notified if the loved one is to be discharged to another facility or back home

3. The hospital or rehabilitation facility must provide an explanation and live instruction of the medical tasks — such as medication management, injections, wound care and transfers — that the family caregiver will perform at home.

Each state has to pass the measure and at present, around 35 states have done so. And remember, each state can supplement their act with additional requirements as determined by the drafters. To find out if your state has passed CARE, it may take some research since I couldn’t find a single source to tell me how many states have or have not passed it. So, do your research with AARP and your own state office and then get going to get it passed in your state.

You ask why would they not pass it and it comes down to, as always, money. Hospitals will have to increase staff and I don’t think anyone wants to pay the millions in free services family caregivers are providing.

As usual, Texas has not passed the bill, so those of you who are ready for the fight, I am ready, too.