Sitting with you in uncertainty: a reflective essay on the contribution of social work to end-of-life care

A way to start the necessary conversations

‘Safe uncertainty’ is a phrase that people may not have heard before, but as a phrase it can be effective at starting a dialogue. As we explain the concept, we can start to gently probe into an individual’s situation. As Egan ¹¹ highlights, ‘Probes, used judiciously, help clients name, take notice of, explore, clarify, or further define any issue at any stage of the helping process’. ‘Safe uncertainty’ introduces a number of conversation starters. What is making you feel unsafe at the moment? What knowledge or information could make you feel safer? What is currently uncertain about the future? What might each of these future possibilities mean to you and your family?

A way to normalise uncertainty

The ability to tolerate uncertainty will naturally vary across the population of patients and families that access palliative care. Without overgeneralising, it could be hypothesised that older generations find it more difficult to face unpredictable situations, especially if their lives to date have been characterised by controlled choices. For example, unlike their younger counterparts, they may have faced more certainty in their chosen careers or the expected trajectories of their romantic relationships. There are many exceptions to this rule of course, but as one of the social workers in our focus group said – ‘It is always worth considering how certain generational tendencies may differ from our own and impact the end-of-life experience in different ways’. In addition, there are other groups of individuals who may find uncertainty particular difficult to tolerate, including those who struggle to regulate their emotions. ¹² The concept of ‘safe uncertainty’ could be particularly relevant for those who are unfamiliar or uncomfortable with the feeling of not knowing what’s around the bend. Telling people ‘It’s ok not to know’ will not eradicate worry or doubt, but it might add a sprinkling of much needed support.

A way to empower patients and families

Unintentionally or not, the holistic, multi-professional approach to hospice care can be disempowering to patients and families. ¹³ On admission, individuals are introduced to a multitude of professionals – nurses, doctors, social workers, chaplains, physiotherapists – which can give the impression that dying is a complex process that requires a team of experts to ‘fix’. Without minimising the skill and compassion that each of these professionals bring to the table, it is important not to forget the expertise of those with lived experience. We believe that helping patients and families to face uncertainty can be one way to readdress this imbalance. By suggesting tools and techniques that can guide them through the perceived chaos, we can provide them with the tools to build their own resilience and to come up with creative pathways rather than focusing on rigid solutions.

A way to facilitate advance care planning and manage expectations

The concept of safe uncertainty can also be applied to the way we manage one of the most challenging aspects of palliative care – that of prognostication. For patients and their families, it often feels like the most important question to be answered, the one that will provide some solid ground from which they can start to accept, discuss and plan. However, prognostication in palliative care is a famously inexact science and disclosing prognosis can cause fear, uncertainty and emotional distress. ¹⁴ As a multidisciplinary team, we often ‘look back’ to look forward, which involves considering a person’s rate of deterioration to try and understand when they are entering the final phase of their life. As a method, this is fairly reliable. However, it is far from certain. This is where Social Work comes in! Our presence in discussions around prognostication and advance care planning can help manage expectations and facilitate dialogue between patients, family members and other professionals. By thinking in terms of ‘safe uncertainty’, we can help remove some of the fear of getting it wrong, for example when we are considering discharging someone whose condition is very variable or unpredictable. We can help the patient and the team acknowledge that although we do not expect someone to die within days of discharge, the reality is that this can sometimes happen. We can talk through the various ‘what if’ scenarios, providing a safe space to explore distressing topics. Of course, all of this pre-emptive work does not mean we feel comfortable when things do ‘go wrong’. Finding out that someone who has just been discharged has died will always provoke big feelings for us and the multidisciplinary team; learning to accept these feelings takes time and reflection.

A way to promote team communication and gain insights

When things do not go according to plan, it is essential that the multidisciplinary team has an opportunity to regroup, reflect and debrief. Once again, ‘safe uncertainty’ can be used as a way to frame these conversations and to provide some comfort when professionals are questioning their own decision-making and practice. At our hospice, we have formal multidisciplinary team meetings throughout the discharge process, allowing all members to share their opinions and discuss what is the safest course of action in the midst of much uncertainty. This is particularly important with a ‘challenging’ live discharge, as we need to ensure that the whole team is behind a decision so that patients and their families hear a consistent and clear message. We also conduct regular ‘Schwartz rounds’ ⁴ to reflect on our learning and growth as well as the triggers we can experience when faced with a lack of certainty. Schwartz rounds are safe spaces provided for clinical and non-clinical teams to explore the emotional impact of our work and to recognise the support we need to provide compassionate care that results in positive patient experiences. ⁴ They are not a space for problem solving but for learned experience and reflection. These are brave and unpredictable conversations that encourage us to sit in a space of ‘safe uncertainty’ as a team.

A way to quantify the contribution of palliative care social workers

By far our favourite definition of the social work profession is the one provided by Ruth Allen, Chief Executive of the British Association of Social Workers. Her quote is worth reading in full, but most pertinent to our current reflections is the claim that as social workers, ‘We are always in the midst of the messy stuff, finding ways forward’. ¹⁵ Uncertainty is our currency! This is unsurprising, given our professional training. All social workers study human development across the lifespan, learning how trauma, loss, ageing and end-of-life issues can impact physical, cognitive and emotional development. ¹⁶ In addition, we should not forget the core competencies of palliative care social work that should be embraced and communicated to level the playing field with other health care disciplines. In the United States, the Educating Social Workers in Palliative and End-of-Life Care (ESPEC) curriculum highlights our specific skills around biopsychosocial-spiritual assessment, advance care planning, family meetings, interprofessional communication and professional development, ¹⁷ whilst a 2018 Delphi study reached a consensus that one of our 41 core competencies is ‘to help patients and families anticipate needs and achieve smooth transition between settings’. ¹⁸ In Europe, two white papers by the European Association of Palliative Care^19,20 and a framework by the Irish Health Service Executive ²¹ all outline similar sets of core competencies – demonstrating that there is substantial international overlap regarding the ways that Social Work contributes to end-of-life care. It is likely that COVID-19 will further crystallise these shared experiences, as Palliative Care Social Workers across the world were required not only to upskill themselves in the midst of a crisis, leading to moral suffering but also opportunities to recognise their resilience, their creativity and the meaning of their work. ²²

Employing the concept of ‘safe uncertainty’ can help us maintain ownership of all of this rich and valuable expertise. As palliative care social workers, we are professionals who are not afraid of the unknown. We have sat with patients and families in the messy world of uncertainty before, and we have helped them safely reach the other side. By saying – ‘I know it’s uncertain, but I can talk to you about my experience, what may happen’, we can be seen as a safe pair of hands – somebody who has seen this before, is open to it, and is not worried.

Case study 1: Uncertainty and holding risk

‘Sitting’ alongside our patients and families in ‘safe uncertainty’ means holding risk and feeling comfortable with managing risk positively. This can often involve promoting a person with lived experience’s independence and rights – a position Social Workers often feel secure in as our training is rooted in law and our values are embedded in human rights and ethics. Part of my social work practice has been supporting other professionals along the way who may feel less comfortable with risk. After all, as Mr Justice Munby notoriously said in a family court judgement ‘. . .What good is it making someone safer if it merely makes them miserable?’ ²³ Holding this uncertainty can take my own courage and faith; as a patient said to me once early in my career when we were exploring their discharge home: ‘I have trusted you, you have to trust me now’. When someone is coming to the end of their life, their goals, wishes and physical condition are constantly changing. As Mason states ‘. . . A position of safe uncertainty is never fixed. It is always evolving. It is a place where doubt, uncertainty, unhelpful difference, can be safely, if at times uncomfortably explored’. ²⁴ As Social Workers we can (hopefully!) aid these conversations with professionals and those important to the dying. Using our communication skills and professional curiosity, we can manage risk and more smoothly navigate the emotional landscape of death and dying.

Case study 2: Uncertainty and leadership

As world events and the echoes of the COVID pandemic leave us heart-sore, the impact of the increasing complexities of our patients ensures that mounting uncertainty is a day-to day experience. As Head of a Hospice IPU, how can I lead my team through a time of change and increasing pressures when they already feel overwhelmed? In a recent Harvard Review Business Article on how to lead through uncertainty, ²⁵ one of the six named strategies was ‘Let Go of Perfectionism’. This approach enables us to create a culture of learning and reflection, makes allowances for mistakes and encourages us to foster the abilities and skills needed to grow and develop. This can be challenging in a hospice environment where the ethos is very much ‘we have one chance to get this right’. Kinman and Grant ²⁶ discussed the concept of ‘Socially prescribed perfectionism’ and the expectations of others in relation to our practice including ‘the public at large’. As a social worker, I have felt the weight of this responsibility from those I support, from myself, and also from the community we serve. There are often heavy expectations of what a hospice ‘should’ be and ‘should’ provide. As a leader, I also have to manage any perceived ‘perfectionism’ that may be projected from managers or even those in my team who expect me to make the ‘right’ decisions because of my position. The reality is, as a human being myself, I think, feel and undergo all of the negative emotions that come with wanting to provide the best possible experience for all who are dying, and I sometimes feel limited by external factors. In the literature, they refer to this debilitating phenomenon as ‘moral distress’, which occurs ‘when individuals feel constrained from acting in accordance with moral choice, or act against moral judgement, generating painful, unresolved emotions and problems that continue long after an event’. ²⁷ I know this has personally contributed towards burnout and feelings of reduced personal accomplishment. I cannot express how many times I have supported my team, paralysed by guilt and shame over errors that were entirely ‘human’. Expecting perfection in a complex environment is impossible, and I feel often we have to be as kind to ourselves as we always try to be to those we care for. As a leader, I have to hold that safe uncertainty of ‘less than perfection is ok’.

Recently, we experienced a challenging few weeks on the IPU. A person with a degenerative brain disease was dying with us, completely vulnerable and only able to communicate using one finger to type. The patient’s young family were bruised and battered by several years of watching their loved one lose so much of their identity. The patient was physically hard to care for and emotional distress was high in interactions between their partner and the team. It was like an electric current running through the IPU, ready to spark at any time – when I met with them, I knew they were on the edge – if I pushed or was ‘too kind’ I knew they would break down and may never stop.

On the other side of the IPU, there was a patient who was regularly bleeding from a neck tumour and laryngectomy site. The constant risk that they may have a catastrophic bleed met the electric current and emotion on the other side of the IPU and created a perfect, terrible storm. By week 3, my team were trying (and struggling) so hard to ‘hold on’ whilst these two patients were on the edge of living, teetering with very complex needs that made us all feel fearful and unsafe. Drawing on my resilience and skills as a Social Worker to lead the team through this felt more important than ever. In my years working in palliative care, I have gained expertise in managing distress and holding a position of ‘authoritative doubt’. My training and experience have allowed me to support people to thrive and learn even whilst in an ‘unsafe’ position. I think that my biggest learning was how important it was to listen, really listen, to be curious about what the team were feeling and ultimately, to provide reassurance that this situation was ‘just for now’. It was also powerful to remind the team of why we are here: to absolutely provide specialist care when people need it most. Delivering this message was not always easy, being present, open and unafraid to have the hard conversations is ingrained in my practice and experience as a Social Worker. I have never needed these skills more to encourage the team to ‘hold on’ until the storm passed.