Navigating uncertainty together

To mark the launch of our upcoming series of webinars focusing on aspects of relational practice in neonatal care, we are excited to share this animated video exploring a relational perspective on palliative care. Please do have a watch, and then read on for more:

Palliative Care can be a area of huge fear and challenge on our neonatal units. Parents are facing devastating loss while trying their best to hold onto hope. Professionals are trying their hardest to work together for the best outcomes for babies and families - but with our most vulnerable infants it can sometimes be hard to agree on what 'best outcomes' look like.

We often hear professionals talk about parallel planning with families - 'hoping for the best while preparing for the worst'. Introducing palliative care as one option at an early stage of care is a hugely important step, allowing parents time to adjust to different potential outcomes.

There is a risk, though, that 'parallel planning' constrains our thinking to a binary decision: simply either "Survival" or "Comfort". In reality, the process of decision making is a complex one, with lots of potential routes and outcomes. What can be equally important is how we hold both families and staff teams in this journey.

This brief animated video explores some of the complexity of palliative care, and how we can use a simple metaphor - the London Underground - to think about what helps everyone to feel safe and supported as they travel through this often uncertain territory.

What has this video brought up for you?

How do you make sense of this?

How do you and your team navigate these uncertain scenarios?

If you are interested to think more about this topic, and other aspects of relational practice in perinatal or paediatric care, you might be interested in our upcoming webinar series, in particular a webinar where we will discuss this topic of a relational focus in palliative care.

If you think your team could benefit from some focused support from us, check out what we can do to be helpful, and what others have said about our work.

We plan to produce more of these brief animated videos addressing other aspects of relational practice. You can sign up to our mailing list at the bottom of this page if you would like to receive updates of future blog posts, webinars and other events.

Please get in touch with us on hello@therelationalpractice.co.uk with any questions or thoughts. We'd love to hear from you.

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Below follows a transcript of the video:

Navigating Uncertainty Together

Conversations about palliative care or end of life care for a baby are incredibly hard. Uncertainty dominates and the possible outcomes can feel completely devastating for parents. In this situation, parents can feel desperate for some hope, or some indication from their clinical team, that something can be done. That the team “do everything for our baby.”

What does it mean to “do everything for a baby” whose life is threatened? When the focus is solely on ensuring baby’s survival, some available treatments might cause the baby pain and suffering. Families and clinical teams sometimes find themselves on different pages about what all of this means.

The practice of palliative care introduces the idea of parallel planning. This is a way of looking at alternative versions of “doing everything”. While we can continue with survival-focused care, we can also, in parallel, consider comfort-focused care too. It’s like we hold two tracks in mind and we encourage families to do the same.

A change in the clinical picture can require that we change track from a focus on survival to a focus on comfort. Even when we have been aware of this parallel track, this change is painful. It requires us to acknowledge an impending loss. And for parents, no loss is more significant or painful. A change in track also requires us to engage again with uncertainty, an experience which the human brain naturally tries to minimise or avoid.

Changing track is hard. What is harder is when you find that you are on a different track from the people around you. Within couples and families, within clinical teams and between families and teams, this can lead to serious conflict.

Uncertainty in neonatal care is not a linear path with parallel tracks. This is a story that we tell ourselves and families to make overwhelming complexity and uncertainty feel more understandable and controllable. The reality can, indeed, seem overwhelming: a complex, interlinked web of possible futures – leading to many different physical, developmental and family outcomes, some of which involve survival, some of which do not.

For us, the helpful bit is not only knowing that alternative, parallel tracks exist, but moreso the process by which we navigate these complex and uncertain paths in our relationships.

This complex interlinked map of clinical possibilities and uncertainties puts us in mind of a map of the London Underground – the Tube Map. The London Underground, too, can feel overwhelming, particularly for those who aren’t so familiar with it: Many destinations, many different routes, some smoother and more direct, others more circuitous, deeper or darker.

To think about what helps families and clinical teams navigate neonatal uncertainty and palliative care, we can think about what helps a passenger navigate the Underground.

Connection.

A key helpful feature of the Underground is the interconnected nature of the tracks. It is these frequent station stops, and their connection to alternative routes, that eases the process of changing direction.

Families and teams in perinatal care also need these frequent chances to come together and consider whether to continue on or to change direction: regular and frequent meetings away from the cotside to take stock and evaluate current and alternative options.

Compassion

Caring, compassionate staff who know what a struggle it can be (and know how to help), are invaluable when navigating the Underground. This is especially important when you feel at the end of your tether.

Families in perinatal care also need close, connected relationships with compassionate staff who can empathise and provide directions when needed. Those staff themselves need to feel grounded, supported and contained.

Values

When navigating the Underground, knowing your preferred destination is important. But it’s also important to know why you’re heading in that direction, and what this trip is about. That way, if you get rerouted, you can still find meaningful and valued destinations.

As humans we are guided by our values. If we can help families and teams get clear about what they care about, what is important to them, this will help in finding a shared direction. Everyone involved also needs to feel that their direction has been heard and understood by others within the system, preferably before the point when an urgent decision about direction needs to be made.

Manageable Information

You don’t need to know all of the possible tube lines and intersections, to get where you want to go. Some people just want information about the stop that’s coming up next. Other people value having a map with the bigger picture. Families (and team members) in perinatal care need access to information about what is happening to their baby in a format that fits for them.

So, when facing uncertainty in perinatal care, we aim for: open, regular and frequent two way dialogue, grounded in listening, compassion, and mutual understanding of what matters. Along with clear information about the track ahead as far as we can see.

Families need this, and staff also need similar space and scaffolding so that they can be there wholeheartedly for their conversations with families. This work is hard, and requires a huge amount of emotional energy that itself is nourished by relationships within the team.

Rather than saying “We will hope for the best and plan for the worst,” instead , we can try saying “We will hope for the best. And while we’re doing that, how will we stay connected with ourselves, with each other, and with what is important for us to hope for along the way?”