How antibiotic underdosing affected my mum’s end of life care: An interview with Ashleigh Hughes

Summary

Ashleigh Hughes is a Senior Sister at an NHS chemotherapy day unit. In this interview she shares her personal story about the impact of antibiotic underdosing on her Mum’s end of life care. Antibiotic underdosing is a medication safety issue that has profound implications for the health service as well as individual patients, but there is currently a lack of understanding and recognition of the issue.

About the Author

Ashleigh Hughes qualified as a nurse in 2010 and began her career in cancer services. She then worked as a Nurse Specialist in interventional radiology from 2013-2017 before returning to cancer services as a Senior Sister of an inpatient oncology and haematology ward. She then became a Senior Sister on the chemotherapy day unit. Ashleigh has a BSc in Cancer Care, an MSc in Practice Development and an NHS leadership Rosalind Franklin award.

Questions & Answers

Hi Ashleigh. Please can you tell us about what happened to your mum after her diagnosis with pulmonary fibrosis?

In the summer of 2022, my mum was diagnosed with pulmonary fibrosis, a fairly rare condition in which scarring in the lungs makes it difficult to breathe. Mum’s diagnosis came quite late—we think she probably had the condition for several years but it was misdiagnosed as COPD and therefore not managed correctly.

There is no cure for pulmonary fibrosis, so Mum was put on treatment to slow disease progression and stop the scar tissue from worsening. When she was hospitalised and put on oxygen permanently in December 2022, we knew that her quality of life would be reduced from that point on.

Unfortunately, Mum was admitted to hospital again in May 2023 with an exacerbation of her symptoms. She had an infection and the plan was to give her IV antibiotics and then get her back home. We knew that Mum was near the end of her life and at this point the palliative care team were saying we were looking at three to four months. My family and I were working on getting care packages in place and the hospital agreed that I could administer Mum’s antibiotics if she was able to get home before finishing the course. However, the care packages were delayed so that didn’t happen and she finished her antibiotics in hospital. 

As is standard practice, the antibiotics were delivered by infusion. Good practice when using infusion machines is to flush the line out afterwards to clear any medication that remains in the line, ensuring that the patient gets 100% of their prescribed dose. If the line isn’t flushed, up to 30% of the product can be left in the set, which means the patient misses a significant amount of the medication. This is particularly important in the case of antibiotics, as not completing a full course can lead to reinfection and, in turn, the development of antimicrobial resistance (AMR).

In Mum’s case, she was on a two-week course of antibiotics with three doses a day, and over the course of treatment, she potentially missed a large proportion of the intended dose. I had questioned the team looking after her about the fact that her infection markers didn’t seem to be decreasing as quickly as they should, but they weren’t worried and seemed to think she was improving clinically. Mum finished the antibiotics on a Friday and the plan was that she would go home the following Wednesday when her care package could start. However, on the Monday, she took a turn for the worse—her oxygen levels were decreasing and she was becoming more unwell, so we were called in to have a chat with the medical team.

The doctors thought that she was having another exacerbation and said that she may be at the end of life and unable to leave hospital. When I questioned whether she might have another infection, they thought it was unlikely given that she had just finished two weeks of antibiotics. It was at that point that I pointed out to the medical team that a proportion of her doses had potentially been missed because the lines hadn’t been flushed. The junior doctor I spoke to was unaware of this issue—the only information that doctors can see via the electronic system is that the doses they have prescribed have been signed as given by the nurses. Many doctors don’t have a concept of how the antibiotics are actually administered and the potential issues involved in delivery.

Due to my concerns, the doctors agreed to repeat Mum’s blood tests, as the missed antibiotics raised the prospect that there might be a reversible cause for her clinical condition. The results showed that her infection markers had shot back up, and were higher than they had been originally, so they started Mum on a new course of antibiotics. Unfortunately, as the plan had been to discharge her home that week, her IV line had already been removed so the nurses had to reinsert cannulas, which was distressing for her.

Mum had always wanted to come home for as long as she could and then go to a hospice when her needs became too great. However, over the course of those few days, she continued to deteriorate and we realised we needed to make a parallel plan for her to go straight into a hospice. 

A hospital ward is really not the best environment for anyone at the end of life—the wards are busy and always facing staffing pressures, so the ratio of nurses to patients is far less than a hospice can offer. A hospice is a calm, quiet environment where the staff are experts in palliative care and symptom management, meaning her symptoms could have been better controlled sooner. If I had been sure that Mum had received the full dose of her initial antibiotics, I could have been more certain that it was her pulmonary fibrosis, and not an infection, that had caused her deterioration. Rather than needing to stay in hospital for another course of antibiotics, she could have moved to a hospice sooner, where she would have had better symptom management and quality of life in her last few days.

Mum stayed a further ten days at the hospital before a bed became available at the hospice. Those days were very tough as Mum was in a lot of pain and struggling to breathe. On the day that she was finally transferred to the hospice, Mum had a very bad morning and was given a lot of sedatives. She became unconscious and sadly didn’t wake again during her final five days of life which she spent at the hospice.

How could antibiotic underdosing have led to reduced quality of care for your mum at the end of her life?

We’ll never know whether the outcome would have been different if we had the assurance that Mum had been given the full doses of her antibiotics. I think about whether she would have recovered from the infection and therefore could have had some time at home or been able to benefit from hospice care earlier. The fact that her infection markers did not reduce as much as they should have done—and climbed higher once she finished the course—suggests to me that the antibiotics were not doing their job effectively, and that’s likely to have been due to underdosing.

I have since sat and worked out that if it was the case that none of her lines were flushed, Mum ended up missing out on somewhere in the region of 12 doses over two weeks. The problem is that it’s a hidden issue. If the doctors and microbiology department had seen on their system that three days of doses were not signed as being administered, they would have questioned whether that was the cause of Mum’s deterioration, but it’s not as obvious when some of the doses are lost due to lines not being flushed.

Why do you think underdosing is not more widely recognised?

I work on a chemotherapy day unit, and flushing lines is standard practice for two reasons—to ensure the patient receives the full dose of their medication and because the drugs we handle are so toxic. As it’s standard practice in my unit, we flush lines for all medications, including antibiotics, which we administer frequently. It never crossed my mind that other departments wouldn’t do the same until I was on the other side of healthcare as a family member, watching nurses delivering Mum’s care. Awareness of the issue of underdosing is low across many clinical areas and it’s just not in most nurses’ consciousness to consider the clinical implications of leaving medication in an IV line.

What are the implications of failing to address the issue of antibiotic underdosing?

When you think about the volume of antibiotics delivered by IV line every day, the scale of the problem is huge. Some patients come as day patients to have a six-week course of antibiotics intravenously. Underdosing potentially reduces that course to the equivalent of four weeks. This renders the antibiotics less effective and the infection returns, so we then need to repeat the course in some patients, as in Mum’s case. In turn, this results in increasing resistance to the drugs.

Underdosing impacts everyone because it adds to the problem of AMR, which is leaving us with fewer and fewer drugs that still work to combat serious infections. We need to think about this not just in terms of individual patients, but also the future of the NHS. Working in cancer services makes the issue very stark to me. We are now much more able to treat cancers and allow people to live longer. However, we may find ourselves in a position where we are successfully treating a patient’s cancer, but they end up with an infection that we can’t treat successfully with antibiotics.

What needs to happen to tackle the problem of underdosing of medications?

I think underdosing is not always seen by trusts as a problem that needs fixing. I have raised the issue with my trust’s microbiology team by highlighting that if you were prescribed a seven-day course of antibiotics by your GP and only took five days’ worth, it would be seen as a major issue. In tablet form, it’s much easier to see the issue and impact, but we need to apply that logic across to IV lines and get everyone to think critically about the impact of underdosing.

One way we can do that is by building a better evidence base to underpin changes in practice. I want to see trusts taking a longer view of the benefits of making line flushing standard practice across all departments. 

There are nursing time, resource and cost implications in any change of practice, so work needs to be done to find out whether cost increases will be offset by a reduction in retreatment and readmission.

Part of the reason why we don’t have much research in this area is that there are ethical issues around comparing the impact of flushing lines versus not flushing. However, we could run historical audits to assess, for example, whether there has been an increase in drug resistance since moving to using infusions on wards. Years ago, the antibiotic that Mum was given was delivered by syringe, so there was no risk of you not getting 100% of the dose. Since switching to using infusion pumps, there haven’t been any studies to assess how the change affected rates of retreatment.

We really need to fill that research gap so that we can demonstrate the impact a relatively small change in practice could make. There are potential financial benefits as well as the primary aims of improving patient safety and quality of care. Trusts are all responding differently to this issue being raised, but hopefully a national policy will be implemented soon so that we can ensure every hospital must do what it can to reduce antibiotic underdosing.

What practical steps need to be taken to increase awareness of antibiotic underdosing?

Targeting the nursing workforce is the most important way to increase awareness—we need to work with students, as well as selling the benefits of a change in practice to nurses working clinically right now. There are two questions nurses need to be asking themselves when delivering any medication:

• Am I giving the full prescribed dose?
• What are the implications of not giving the full dose?

The skill of evaluating the clinical impact of our practice has been lost somewhat over the years amongst nurses—as things get busier and there’s more pressure to document everything you do, the tasks that aren’t obviously having an impact on quality of care get lost. There’s an assumption that the doctors will pick up on any issues such as raised infection markers. However, as I mentioned before, there is a bit of a gap in doctors' understanding about how medications are delivered in practice, and how this can affect a patient’s clinical state. 

What impact did the events at the end of your mum's life have on you and your family?

It’s hard because I feel like Mum was robbed of time she could have had at home. When we were called in to see the medical team, we all struggled to get our heads round the best thing to do for her. 

I often stayed overnight with Mum while she was in hospital and, although it was something I was glad to do for her, it was tough. She often asked for me, as I think she felt secure knowing that I was qualified to care for her. I felt I had to keep my ‘nurse hat’ on, staying awake overnight to ensure she kept her oxygen mask on and had someone with her when she panicked about not being able to breathe. When Mum finally moved to the hospice it was much better for both of us, as I could just focus on being her daughter. I wish it could have happened sooner.

Related reading

• Tackling antibiotic underdosing: Interview with Ruth Dando, Head of Nursing for Theatres, Critical Care and Anaesthetics at BHRUHT - Medication administration
• Short-term intermittent IV antibiotics – Understanding the issue of under delivery
• Understanding the importance of accurate antibiotic administration through an IV administration set (drip): A patient’s guide
• Antibiotic underdosing and disposal in NHS organisations across Great Britain (20 November 2023)