Hospice nurses need support to get care right for a dying person

I can remember waking up in the middle of the night wondering whether I had given a patient on my ward his medication before I finished my shift. I also recall numerous moments on my way home from work, rethinking events and decisions in someone’s care just to check I hadn’t missed anything.

Contrary to popular belief, hospice nurses are mere mortals, not angels, struggling with a whole variety of challenges to provide the high-quality care with which they are appropriately associated.

The struggle of hospice nurses and others to “get it right” for terminally ill patients and their families is not a new one. I can remember many moments in my 30-year career as a nurse when I have questioned whether I might have done things differently or better.

There is no doubt in my mind that delivering the best possible care is the driving ambition of the hospice workforce – spending every shift trying to ensure that people coming to the end of their life, and their families, feel supported and get the care that they need. Feedback from patients and their carers confirms that hospice workers are successful in their efforts (see the Commission into the Future of Hospice Care, National Survey of Bereaved People Voices), meaning that hospice care is seen as the gold standard of end-of-life care.

This is a source of great pride, but it is by no means easy to achieve and maintain. It has many challenges and much of this crucial care must be provided for people at home, in isolation from the broader team and its support. We need to make sure hospice staff have the right skills and processes to support them.

Difficulties are increasing for practising nurses. Like the general population, an increasing proportion of the hospice workforce is caring for someone in their own family who is older, perhaps dying, as well as reaching out in their work to frail and elderly people, or children with life-limiting conditions.

These workers regularly face the darker side of dying and loss, and sometimes the anger and fear of patients struggling to accept their illness and mortality; staff may also experience verbal aggression from fractured families playing out their distress and anxieties.

So how do we support, sustain and enable the hospice workforce to grow to respond to these emerging needs? Hospice UK has been working with The Point of Care Foundation and developed Resilience: a framework supporting the hospice workforce to flourish in stressful times – guidance for hospices on working with their staff and volunteers to become more resilient.

The guidance recognises that stress is not only about the nature of the work, but also about how change is managed in the organisation. It is evidence-based and proposes a variety of interventions that hospice boards, managers, staff and volunteers should consider. The challenge now is in the hands of those in charge of hospice care: do they take heed and put in place the systems and processes recommended, or rely on the strengths of a workforce and its goodwill?

There are stress points in all occupations, but the direct impact that our actions – or inaction – can have on a patient and those around them is more than sobering.

When you care for someone at the end of their life, you never forget you have one chance to get care right for the dying person and those close to them. As a result, staff and volunteers will go the extra mile and at times push boundaries to enable the dying to have the care they want.

Sometimes this is a matter of providing a favourite meal for someone who has a decreasing appetite; at the other extreme it could be helping someone with only weeks to live fly thousands of miles to die in his or her homeland. I see incredibly creative endeavours to enable the person to have the death they want, which in itself creates an additional emotional burden for staff but one they willingly shoulder.

It’s tempting to think of these men and women, who display such strength and pragmatism in the face of death, as being immune to the emotions that surround it. However, the will may be strong but going above and beyond is not sustainable without support, self-awareness and resilience.