I have been thinking about the unique contribution of the
nurse as a member of a multi-professional team caring for someone coming to
the end of life and want to make a claim for our role in protecting an
When I talk of ‘personhood’ I am thinking about their identity, linked to their status of being a person, and the inherent value of that individualised being. It may not be where people would immediately place the priority of the nurse given the myriad and often complex needs of someone who is dying but I am going to argue that it is vitally important for the people for whom we seek to care.
Our patients are situated in a time of their life characterised by uncertainty and change, resulting very often in fear or anxiety. At the very time when being anchored by, centred through and recognised as the person they are, those aspects of themselves that define their personhood are at risk of being forgotten or ignored. This isn’t necessarily about poor care, it is just as much about the impact of someone’s illness.
Our patients are situated in a time of their life characterised by uncertainty and change, resulting very often in fear or anxiety
Growing disability, reducing cognitive function, increasing fatigue, decreasing interest or ability to engage in social activities all start to erode the ability of someone to be the person they have been, and aspire to be in the rest of their life.
And this unfortunate situation may be exacerbated through the impact of a long term, advancing illness on family, and friends – vital players in keeping someone’s personhood intact. Sometimes the illness itself has physical or other consequences that others can find fearful or revolting. Fungating tumours; radically changed physical features; a change in one’s personality are obvious examples.
Family members may well struggle to stay connected emotionally in a relationship when the diagnosis of a terminal condition is prolonged and challenging. The inevitable disparity between the future anticipated by the dying person and that planned by those around them may further contribute to an experience of social devalue on the part of the patient as ‘others’ lives go on’. This can be a painful and isolated place for them to be.
So what is the role of the nurse at such times?
Firstly, the nurse is in a strong and privileged position to
get to know the patient as a person. They can find out about who they are,
who they have been, their values, goals and any red lines over which no one
must step. The nursing process lends itself to this in its relational,
inductive and incremental nature.
Secondly, the nurse has an opportunity and a responsibility to keep the ‘person’ present in all conversations about a patient and their needs.
The nurse is in a strong and privileged position to get to know the patient as a person
The nurse participates in many if not all discussions about someone’s care – handovers, board rounds, ward rounds and other multi-disciplinary meetings. They can hold the tension between necessary discussion regarding clinical needs and important conversation about the person and progress in relation to their goals. They can shape language, focus of discussion and the team involved in someone’s care. They are often at the centre of planning care and its evaluation and keeping the person central to this ensures an approach focused on what is most important to them.
Thirdly, the nurse can often help preserve the person and their role within their social world – at home, in their family and community. The palliative nurse is often key to constructing someone’s environment within which they live the remainder of their life that can make all the difference to someone retaining a sense of who they are and what is important to them as social, embodied and sentient beings. This may be about attending to someone’s physical context – the room(s) that they occupy, the bed in which they sleep, the place in which they wash and toilet, and how they eat.
It may be about helping to shape the approach to risk adopted by the person themselves, their family and others involved in their care. Where should they be careful and where can they be more confident? What priority do they give to safety at the cost of attending to important goals and aspirations? The nurse can model discussions; help people make realistic plans, support families to see beyond illness and apparent limitations and encourage and support triumphs that reinforce personhood.
Finally, the palliative nurse can help someone who is
dying consider their legacy and in so doing protect their personhood beyond
their death. They are often central to conversations with people about what
they most fear as they anticipate their death. When being remembered is
important, the nurse can help consider how best this is ensured. For families
this is often just too difficult a conversation to start without support or
facilitation yet healing in its receipt and enactment. The nurse can help
You may ask why I push the nurse forward for these efforts and not another member of the multi professional team. It is in no way a reflection on their abilities, more about a different set of priorities for many of them.
Whilst other members may be transitory in someone’s care over time, the nurse is often the constant in a person’s care. This affords the nurse a breadth of perspective regarding the needs and aspirations that helps the person discover and preserve their personhood beyond an increasing loss of independence which a life limiting illness ultimately brings.
We are in the strong position to be the guardian of someone’s personhood when this is required. It is our opportunity and we must grasp it and develop our narrative, skills and authority accordingly.
Find out more about our year of celebrating palliative nursing and our webinar series on Rising to the Challenge in Nursing.
Heather Richardson is Joint Chief Executive at St Christopher’s Hospice. She is a registered general and mental health nurse and has worked in hospice/palliative care since 1988. She has held a variety of roles in adult and children’s palliative care, both clinical and managerial in nature.
She has a Master’s degree in Health Management and a PhD, her research concerned with users’ experience of day hospice.