Intense reality of being a paediatric retrieval nurse

We’re excited to bring you this exclusive interview with Jess Rowe, a Clinical Nurse Specialist and Paediatric Retrieval Nurse with Paediatric Infant Perinatal Emergency Retrieval (PIPER) at the Royal Children’s Hospital, Melbourne. Jess shares her career journey, her passion for paediatric intensive care, and her advocacy for compassionate, family-centred end-of-life care.

If you’re interested in more stories like this, explore our PICU & paediatric nursing articles or check out our live interviews with nurses across Australia.

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Please introduce yourself

I am a Clinical Nurse Specialist with a bereavement portfolio in the Paediatric Intensive Care Unit and a Paediatric Retrieval Nurse for Paediatric Infant Perinatal Emergency Retrieval (PIPER) with a post grad dip in Paed Crit Care. Because of my interest in end-of-life (EOL) I have also completed a post grad cert in Palliative Care. I am a long-time fan of the television series The Amazing Race, and about 15 years ago I applied to be on the show. One of the prerequisites was the ability to drive a car with a manual transmission, so I sold my auto and bought a manual (not knowing how to drive one) to show my dedication – I didn’t get on the show, but I now know how to drive a manual.

Can you share your journey into paediatric ICU and becoming a retrieval nurse?

It was serendipitous. When I went to my final nursing placement I found out that the ward had been recently closed, unbeknown to my university. At first, we were told we would have to finish the following year because they didn’t have new places for us. That afternoon I got a call, that a spot had opened up in PICU if I would like it.

I absolutely loved it and I stayed on to do my graduate year there too. I often think of the student who gave up their placement and hope they found the right place for them too. Just after my graduate year we had an incredibly unwell near drowning in our unit in Adelaide. The Melbourne team came to place her on extracorporeal life support (ECLS, often referred to as Extracorporeal Membrane Oxygenation, ECMO) then flew her back to Melbourne and I was fascinated.

The nursing staff especially had this incredible balance of skill and autonomy with great teamwork. I asked my husband if we could go over to learn more about ECLS and retrieval for a year and we’ve been here for about 15 years.

What does a typical shift look like for you in paediatric intensive care or as a retrieval nurse? 

I think several of my colleagues who job share between PICU and Retrieval would agree that there are some similarities and differences that make the two jobs complement each other well. In general, you have some expectation of what your day will look like in PICU – either at the bedside in a one-to-one nursing role or as an access nurse where you know the planned cardiac and general cases.

Bedside Nurse

If you are bedside, you may use skills to assess respiratory support, wean ventilation, titrate medications supporting heart function, altering machine supporting renal function. You are part of the bedside handover to medical staff, discuss how to help your patient progress forward and including the child’s and family voice in the discussions.

Access Nurse

If you are the access nurse, who helps across the entire unit, you are helping with patient flow in and out of the hospital, attending the medical emergency calls hospital wide, you may have some emergency admissions or acute critical events, such as a chest opening or cardiac arrest, but in general you know your role and as long as you know a weight (or guess one), you know what your resources are, where your medications are and the general next steps.

Retrieval Nurse

In retrieval, however, your shift starts with handover and checking all your equipment and then waiting for referrals. They come in from across the state. Many are children that do need to transfer to a tertiary hospital but may be safe with Ambulance Victoria or the Mobile Intensive Care Ambulance (MICA) Paramedics. If it is a child who needs transfer or admission to an intensive care because they are intubated, clinically unstable or requiring intensive therapies like inotropes or respiratory support, then together with a doctor, we drive or fly to referring hospital. The role expects autonomy and flexibility, working with the referring hospital (often team members you don’t know), to help stabilise them and then safely transporting them with just you and the doctor. So, lots of ‘worst case scenario’ discussions to be best prepared with what you’ve got at hand. 

What do you find most rewarding and most challenging about working with critically unwell children and their families?

Mr Rogers is famous for sharing that when he felt overwhelmed with scary news stories, that his Mum would reassure him by telling him to “look for the helpers, you will always find people helping”. I often reflect on how privileged I feel to have been trained with skills that allow me to help critically unwell children and their families. You take a deep breath and then use the skills we are trained in to do the best we can.

What inspired your involvement in end-of-life care advocacy and ethics panels?

On my first day of my PICU third year nursing placement, a mother, who was also a nurse herself, came up to me saying her daughter was actively dying from a known life-limiting condition, and she invited me to care for her daughter. During the shift she spoke eloquently of the importance of the nurse, how impactful we can be at the bedside, and how important we are in setting a family up for future long-term grief that extends well after the hospital experience. It had a profound impact on me.

A few years later I was looking after another beautiful little boy who had died in theatre and his father asked if he could talk to me. He spoke of how bereaved family’s experiences are so important and their voice needs to be amplified, but that is hard to do when you are in the depths of grief.

He pointed out how I hadn’t been afraid to sit in the dark pit and amplify their voice when they felt they couldn’t more than whisper. He encouraged me to keep being curious, acknowledging family’s needs will be different for everyone and to keep amplifying the voice of dying children and their bereaved families. That has since been my goal.

What are some common ethical dilemmas you see arise in paediatric ICU settings, and how are they navigated?

The PICU is full of ethical moments of varying impact on a daily basis. Things like resource allocation – if you have multiple critically ill children at the same time – who has medical round first? Moral distress from sitting in uncertainty of what the outcome may be, observing suffering or pain, feeling like we may not be acting in the best interest of the child.

Are we causing undue suffering through multiple invasive procedures where death is the most probable outcome? Many of our children are also of developing age and autonomy. Information sharing is a dilemma we see in paeds a lot – what and how much do you tell a child? That can be an exceptionally difficult place to navigate with families who may not want to disclose a diagnosis. Clear, regular and honest communication and supporting the families and staff to consider ethical frameworks can help support ethically informed decisions. There is a lot of research out there also demonstrating the benefit this training can have on reducing staff burn out.

Can you explain what the Clinical Ethics Response Group does and your role in it?

The Clinical Ethics Response Group (CERG) is comprised of around 150 medical, nursing and allied health representatives. The CERG role is to provide advice and support on ethically informed clinical decision making. A CERG meeting may be called at any time, to discuss a specific ethically challenging component of a case and as a CERG member I would join this meeting, dependant on my availability. I joined the CERG team after completing a Bioethics ran course on clinical ethics, we are then expected to attend regular training throughout the year.

Tell us about your Elizabeth Fearon Scholarship and your research into Compassionate Transport — what is it, and why is it important?

The Elizabeth Fearon Scholarship is generously funded by The Royal Children’s Hospital League of Former Trainees (LOFT). Through their support, I have been able to conduct 3 focus groups with our Neonatal Intensive Care Unit and Very Special Kids, the only paediatric hospice in Victoria. These focus group compliments and completes a multi-department research project I started through an introduction to research program at RCH.

All this work has been supported by two amazing, experienced researchers, Jenny O’Neill and Meaghan Hawley. The whole project is exploring clinicians’ perceptions of enablers and barriers to providing Compassionate Transports as a standard end-of-life care option. Compassionate transports are when you transport a patient to their preferred location for their death and then remove the life-sustaining treatment.

The Victorian Paediatric Palliative Care Program (VPPCP) offers a program to move children on wards to their preferred place but currently a child is medically complex with their life-sustaining treatments (such as breathing tube, intravenous medications etc), it usually precludes them. The Compassionate Transport guideline, which is planned to be statewide, would allow these children to also be considered for transport.

What are some of the clinical and emotional complexities of transporting children to their preferred place of death?

The research has provided some interesting reflections to that question. The truth is anything is possible but always seems overwhelming and difficult when it is new. There are layers of complexity and processes that need to activate to make a transport physically happen – a team, ambulance, equipment, community team to receive the child and family, what happens if they live longer than expected? These transports also do have an emotional toll which needs to be acknowledged and appropriately supported too, just as any death should be.

How do you see your work shaping statewide or national guidelines in the future?

Equitable care and options, regardless of location or circumstance is the long-term goal. Families have asked for this, and their circumstances and situations have been exceptionally varied. That should not be a reason for exclusion just something we need to consider thoroughly and have pathways for. I hope the themes brought up from this research will help inform concerns and considerations of clinicians on this topic to help create comprehensive guidelines nationally.

How can nurses better advocate for compassionate, family-centred end-of-life options in acute settings?

I think it is important to remember it is child and family centred care. Be curious to who the child is, invite the family to talk about their child (if they are a baby, ask about their pregnancy journey, where their baby’s name came from etc), what are their favourite things?

Ask what is important to them as a family and their support. It can be especially important to ask about their cultural processes, because death is respected and responded to very differently between cultural groups. This will immediately help you understand the child and family and help you navigate the end-of-life care in a personalised manner.

What advice would you give to nurses or students interested in paediatric ICU, ethics, or palliative care?

There are amazing self-directed education opportunities in all of these areas if you want to explore more including Paediatric Palliative Care Education Hub and End-of-Life Essentials by Flinders University. There are also some great podcasts: RCH Essential Ethics Podcast, VPPCP’s ‘Life, Love and Loss’, Pediatrica Intensiva and The Doctor’s Art. If you feel drawn to it, I encourage you to try it. When you get there, if you love it, stay with it. Don’t be intimidated – every person you meet was new once too. 

What’s one moment from your career that you’ll never forget?

I shared this story at our hospital’s first Schwartz Round. Shortly after we had told a young patient that their guardian had died in the same accident which had led them to be in hospital, I was alone with them. They looked at me and asked if I was a figment of their imagination, just a character in a nightmare and that soon they would wake up. They begged me to pinch them and wake them up.

I reflected deeply on the fact that all our patients come to hospital, because they have to. For some, it is for nightmarish reasons and others for mild inconveniences but still for something needing attention. As a healthcare worker, though, I get to choose to come to work. The day I can’t appreciate that will be my indicator to resign.