A privilege to provide palliative care

13 February 2020
Volume 29 · Issue 3

I am privileged to be Chief Executive of one of the largest and oldest hospices in the UK. I say to anyone who will listen that it's the best job in the world. But that doesn't mean it's always easy; as a registered nurse and health visitor I am fully aware of the challenges facing the profession as a whole. One of the biggest we face is the expected 40% increase in demand for palliative care services over the next 25 years, with dementia cases predicted to surpass those of cancer by 2040. People are living longer because of the great strides in cancer treatment, which must be applauded, but it brings with it a corresponding need to adapt our model of care. Our health service is already struggling to meet the requirements of patients—add into the mix a shortage of nurses, then it's easy to see the potential impact.

When our very own hospice pioneers were faced with poverty-associated diseases such as tuberculosis, 120 years ago, care was solely focused on making people comfortable at the very end of life. Today modern hospice care, pioneered by Dame Cicely Saunders, who gained much of her early palliative care experience and learning working at St Joseph's Hospice, encompasses all of a person's physical, psychological, social, spiritual and practical struggles. Hospices now support people much earlier in their diagnosis in a holistic way so that they have as good a quality of life as possible. Our care goes beyond the patient to their family, to prepare them for the impending loss of their loved one, then supporting them once bereaved.

The patients we support in the East End of London are statistically some of the most deprived in the UK. According to Shelter, the three core boroughs we serve are in the top ten for homelessness in the country and over a third of our patients are below the poverty threshold. Over half of our patients are from Black, Asian, minority ethnic and refugee populations—among some of the most culturally and religiously diverse in the country. It's easy to see why a personalised approach is essential.

There are cultural barriers to attending hospices for some of our communities. The perception can be that you only go to a hospice to die, yet in reality half of our patients go home after an inpatient stay for symptom control and pain management. At St Joseph's, care is not only in our inpatient beds; we have a day service and a community team, which means we can tailor care to the individual. Our award-winning volunteer-led Compassionate Neighbours programme plays a vital role in helping with community engagement. Along with our local faith leader they spread the word about the hospice to their communities to ensure that everyone gets access to the care they need.

Lack of NHS funding for hospices has challenged us to find new ways to plug the gap, and our shortfall is around £7 million a year. Legacies, corporate donations, fundraising and enterprise activities make up the rest, but we can't always rely on this income. We have yet to find out how the Government will distribute the promised £25 million cash injection for 2019/20 in hospices and palliative care services, but realistically it is a drop in the ocean and as demand for hospice services grows and the cost of care increases, it becomes more difficult to reach our targets.

Recruiting nurses is difficult as many hospices are independent, so terms and conditions may not match the NHS. But they offer a fantastic career path with a variety of specialist nursing roles. I may be biased but I think it's one of the most rewarding nursing jobs you'll ever have. All of our nurses have undertaken further training in palliative care, with many holding Masters qualifications. Our nurses often say that it is a privilege to work with people in their last years of life and I wholeheartedly agree. Working in a hospice, you get to practise nursing the way you were taught. There is generally a low patient-to-nurse ratio and a clinical environment that makes individualised nursing care achievable. You work as part of a multidisciplinary team where your views are listened to and respected. Our palliative care nurses provide support and advice to non-specialist health professional colleagues and in turn we help staff meet their objectives for professional practice and personal development.

Looking ahead we need to constantly evolve the way we support the changing needs of our communities and to educate them on the services we offer. We've been around for 115 years so we think we're up to the challenge.