Community Palliative Care: the role of the Clinical Nurse Specialist

Most of us know that hospices provide palliative care to people as they approach the end of their lives. What we may not have realised, though, is that a patient’s palliative care journey can sometimes last not just for weeks or months, but for years. ellenor stays with its patients and their families for as long as they need us, and it is our Clinical Nurse Specialists who are at the very forefront of the support we offer.

Clinical Nurse Specialist (CNS) Linda Cahill works for hospice charity ellenor as part of the Home Care adults’ team. Her vital role sees her providing palliative care to patients and families – but not just those whose lives will end imminently. If a patient is diagnosed with a life-limiting condition, such as motor neurone disease, for instance, Linda’s support could last between two to three years, and possibly even longer. Whatever the length of a patient’s life expectancy, Linda’s commitment to making everyday matter for them and their families remains unwavering.

Linda’s role sees her working out just what sort of support the patient needs, then working with others in ellenor’s multi-disciplinary team to implement it. This process begins with a holistic assessment that considers all aspects of the patient’s wellbeing – physical, mental and spiritual – so that a care plan can be produced. Linda is the link between the patient and all other members of the hospice team, ensuring that everyone is fully aware of the patient’s individual needs and of changes in situations that invariably occur.

“The psychological aspects of palliative care are vital to the job and patients need to be guided in the right direction when they’re struggling to make difficult decisions on a day-to-day basis,” acknowledges Linda. “A CNS also needs to recognise when she needs to contact other agencies, such as our wellbeing or chaplaincy teams, so that every aspect of a patient’s care is attended to. While you definitely need to be a good listener in this job, I’m also a negotiator, working with team members and outside agencies to ensure the best for the patient, and an educator, ensuring that at all times everyone involved knows what’s going on and why.”

As well as having to be ever mindful of a patient’s needs and those of their family, however, CNSs also need to be aware of their own limitations. “We all need help sometimes, whether practically or emotionally and CNSs are certainly no different in that respect,” says Linda. “One of the things I appreciate about ellenor is the recognition of what we do and the pressures of the role, which help ensure our workload is limited when required. We’ve been encouraged to take extra care of our mental health during lockdown and the support is there: I have regular clinical supervision, for instance, at which I can share issues with the wider team. Palliative care is very rewarding, but it’s stressful too and I do need to look after myself to be able to give my best when I am at work. I am also one the lookout for any colleagues who might need additional support.”

The hospice at home team, of which Linda is a key part, is small – she’s the only permanent full-time CNS, though there are five other staff nurses working at ellenor. As well as hands-on nursing, her role involves constant liaison with everyone involved in the patient’s care, from family to and the hospice team, to professionals who might include GPs, physios, dieticians and occupational therapists. First and foremost, the patient and their family need to understand exactly what is happening and why, but it is essential that every other person involved in their care is always fully up-to-speed, too.

A major component of Linda’s work focuses on the emotional care and support offered to patients and their families. “It’s about building trust, so that patients feel they can contact us for advice as their condition changes. Everyone involved – including the patient’s family – needs to feel that their concerns are being listened to and their wishes met as far as they possibly can be. From the medical team’s point of view, the patient needs to understand why and how they’re receiving treatment and the implications of it. A CNS’s guidance here is so important in helping to keep stress to a minimum. The aim is to offer a calm, non-biased listening ear to whatever the patient is feeling at the time and to be sensitive to levels of stress for the family as a whole. If necessary, I’ll call in other agencies of team members – member of our counselling team, for instance, to help diffuse any issues that might have arisen.”

Linda’s job may be challenging but she has never doubted the value of her role: “I’ve always wanted to be a palliative care nurse and to help guide people through the challenges of end-of-life care. It’s rewarding to know you’ve done as much as you possibly can for patients and their families and if I’ve helped make their situations better in any way, I know that I’ve done my job right.”