Is it time for a protocol for long-term central venous access? A caregiver's perspective

Note: This blog presents the personal opinion and experience of the author, and the practices described here are not an endorsement by the AVATAR Group.

Being the caregiver of a child with a central line is a full-time job. After 5 years, I have become more confident with my skills but the worry is still constant. And paralyzing fear is continually just below the surface.

I attended a lecture where Jack LeDonne, MD said, "The average central line is in for 6 days." I audibly gasped. 1989. That's how many days my son has had a central line. And counting.

It gave me great pause to realize the protocols are in place for the central line of 16 days. These patients are primarily in the hospital setting. The protocols are followed out by healthcare professionals.

Are there protocols for lines that last over a week? Over a month? Over a year? Five years and counting? And what about supports? Is anyone bridging the gap between the hospital, where the initial insertion took place, and the home? Is there proper training and support for the home caregivers? Should there be special considerations for patients who use their lines outside the hospital environment? What happens when a patient whose caregiver does all line care and maintenance is readmitted? Are there considerations and special protocols to keep that patient and line safe?

In my experience, the answer is no to almost all of these questions. I believe this is a huge gap that needs some consideration.

My son, Manny, is now 7 1/2. At the age of 2, he got his first PICC for Total Parenteral Nutrition (TPN). Doctors were very forthright about their beliefs such as: "Putting him on TPN is life-shortening", "A central line is a life-shortening decision", "Expect at least 2 infections per year", and several other beliefs I have come to know are FALSE.

What the healthcare system did not adequately give me is the necessary tools and knowledge to keep my son or his central line safe. Those I had to learn on my own, mostly the hard way.

One of the times I feel most vulnerable is when we are readmitted. All too often, he is being taken care of by a bedside clinician who has little to no experience with a central line. Often, they are dismissive of protocols (handwashing, scrubbing, flushing, etc.). Almost all of the complications we have faced were while in the hospital, not in the home.

I have learned: Complications will happen. I must be proactive in what the plan of action is for each.

1) Line occlusion:
a. At home: I do all line care. Therefore, well before the line occludes, I start to feel the line is a bit sluggish: I can immediately feel it. I take proactive steps such as extra flushing or pulsing flush. I can ask my provider for a prophylactic dosage of an anti-clot medication. I do not let it get to the point of an occlusion.
b. At the hospital: This is when I am on high alert. Flushing is done by numerous people in a day. They have no comparison of what is normal versus sluggish. Also, often there are added medicines and a different routine for the line usage in the hospital. Once a line starts to get sluggish, I find this is when the odds of a line fracture increase significantly.

2) Line infection:
a. At home: We have had no line infections. I believe this is due to a lot of factors. One caregiver, ethanol lock therapy and a home bundle (hand hygiene, cleaning of the hub, meticulous dressing changes, minimal accessing of the line, constant monitoring of the line, site, skin and dressing).
b. At the hospital: Again, this is where we are most vulnerable. Multiple people are accessing his line and various intervals. Many are hit or miss with the adherence to the hospital bundle protocol. We are often pressured to forego the ethanol lock therapy in favor of continual fluids. Nurses are inconsistent on frequency and quality of monitoring the line, site, skin and dressing.

3) Site infection
a. At home: I routinely inspect the exit site during dressing changes. (The site is obscured by the disk until the dressing change.) Monitoring a potential issue at home is complicated. I have run into a "whose line is it anyway" problem. The surgeon put in the device. The GI (gastrointestinal doctor) orders the medicines. The home health company makes the medicines that run through the device. If we were admitted, the vascular access team would monitor the device. But at home, there is no one directly responsible for the device. (For example, his exit site began to look red and was oozing. The protocols were not in place for us to get any labs drawn, including a site culture. We ultimately had to be admitted for treatment, which should have been avoidable.)
b. At the hospital: The vascular access team would assess and treat any issues during a routine dressing change.

4) Skin integrity
a. At home: I only have products (dressings and cleaning agents) to which he is not allergic. Daily, I inspect for any signs of redness, contact dermatitis or other skin issues. Periodically, he develops sensitivities to products he has been routinely using. I do a skin patch test on him with each product in isolation on a nearby site. I also stay on top of knowing about the latest products because if/when he starts to have a reaction to the current products, I need back up.
b. At the hospital: Every product is readily available. Even with an allergy band clearly marked, the allergy documented properly, and me standing bedside saying he is allergic to a product, we have had the product placed on him. Standing guard 100% of the time is still not foolproof. (Example: Manny is allergic to CHG. It's on his band, his chart and I told the nurse. She acknowledged she would not use it. She turned off the light to see his vein with a light. She started scrubbing his skin. I noticed a familiar smell: CHG. I said, "That's CHG!" And she immediately stopped, scrubbed his skin but it was already too late. His skin was already blistering.) CHG, in particular, is the "go to" product for central lines. In the United States, a person with a central line will be bathed in this product daily. It is considered to be a better antiseptic. However, anecdotally, CHG allergy/sensitivity seems to be an exposure allergy. Meaning, the more the person is exposed, the more likely they are to develop the allergy. This is yet another example of how the protocol for short-term versus long-term central line usage might need to vary.

5) Line fracture
a. At home: This has never happened at home.
b. At the hospital: 9 line fractures happened in 27 months. This started me asking what clinicians were doing differently than I was. In my case, I found that occlusions started the cascade issues. Next, the clinicians were using power flushing incorrectly and fracturing the line. Also, the clinicians were pulling very hard when trying to aspirate blood as well as twisting the line. The solution I found was a counter pull on the hub and extra securement on the dressing. Since implementing these two interventions, we have had zero line fractures in 28 months.

6) Line migration
We have only had this issue once. Because my son has a tunneled catheter, the odds of migration are significantly less after the skin has adhered to the inner cuff. On one occasion, his body expelled the catheter after being in only a few months. The surgeon said it was because he had placed it too shallow.

7) Line replacement
Conversations need to include: Who is the best provider to place the new device? What is the recommended device and why? When should this be placed? (For example, after a certain number of negative blood cultures if replacing because of removal due to infection.) Where should this be placed? (For example, if this is a pediatric girl, is low on the chest going to be a long term solution? Or for a short-gut child, is low on the abdomen near the feeding tube or diaper area really the best choice?)

8) Vein preservation
This thought is continually in the forefront of my mind. Every decision I make has to do with long-term vein preservation. My son will be on TPN for his entire life. I know there are limited access points. My son has a fatal condition. Early on, a vascular access nurse and I decided, "He might die, but it won't be due to something vascular access-related." It has become my mantra.

There ARE things we can do to reduce complications, morbidity and mortality associated with long-term catheter usage. Reducing them starts with believing we can.

Beth Gore is a keynote speaker and patient safety advocate. She was recently hired by AVA (Association for Vascular Access) in that role. "Speaking for those who cannot speak for themselves" is her personal life mission. Beth's most important role is as the mother to 6 children, all of whom are adopted with special needs. She, her husband and family live in Tampa, Florida.