A recent letter in the International Journal of Palliative Nursing questioned the benefits and expense of hospice beds. My response, which you can read below, was published a few weeks later
Marching on together!
The recent correspondence from Anthony Waite questioned the future of inpatient hospices and asked some important questions that those of us responsible for hospice care should consider. He suggested that the creation of specialist palliative care and the concentration of care within hospices may have hindered the development of good end of life care elsewhere and that inpatient units risk undermining other organisations.
As a hospice CEO, readers might think I would be writing to vehemently disagree with him, but actually I believe hospices should listen to such criticism, and reflect on why it is happening and how we respond to it. Whilst I acknowledge there is wonderful care delivered on an inpatient unit, it is not without disadvantages. Disadvantages for patients and families and potentially financial disadvantages for a hospice budget.
But why are we so attached to the hospice beds? I believe that hospice beds are frequently perceived as the solution when there are intractable problems, not just by palliative care practitioners, but more importantly by healthcare colleagues. Beds can offer the hope of a solution, perhaps even when there is none. Beds are the ‘lifeboat’ of end of life care. When I was a community Macmillan Nurse I also thought: ‘Well if this doesn't work let’s consider an admission.” However now I am encouraging my team to think differently.
Inpatient hospice care is often positioned as a therapeutic environment to treat those with the most complex problems. We must acknowledge that, with so few hospice beds available, this therapeutic intervention is in reality available to very few patients. Those admitted to hospice beds are said to be those with the most complex problems, but how should hospices really prioritise who has access to that limited resource? Who has priority? Someone with complex physical problems or someone with intractable social or psychological problems?
Perhaps the environment is therapeutic not because of the ‘hotel-like’ surroundings, but because of interventions delivered by expert practitioners and, I believe more importantly, because of the compassion and humanity shown by the whole team: from the Consultant to the volunteers. Interestingly, Dame Barbara Monroe reported at last year’s Help the Hospices conference in Bournemouth that the patients cared for by their staff in a ward in Lewisham Hospital reported the same SKIPP outcomes as those who had received care in St Christopher’s Hospice beds.
We shouldn't forget that there can be disadvantages to an inpatient stay. If staff aren't careful, people admitted can lose their independence. Perhaps we don’t always make the most of opportunities to help carers improve their confidence in caring. We also often see the distress caused to patients and families if they are transferred from a hospice ward to a care home. However good the care home, many people feel angry that a family member has been deprived of their wonderful hospice care.
Financially, inpatient beds use a disproportionate amount of money in relation to the people they support. For example last year St Christopher's Hospice supported 2,000 patients in the community and admitted 830 people to their 48-bedded unit. However their inpatient care accounted for 48 per cent of their budget (St Christopher's Hospice, 2013). Here at St Nicholas Hospice Care the picture is not dissimilar: last year we supported 959 patients in the community and admitted 227 to our ward - a ward that used 35 per cent of our annual expenditure (St Nicholas Hospice Care, 2013).
One might ask if this is the best use of our donations and NHS funding? I acknowledge that inpatient beds are a visible attraction for potential donors, but they are like the tip of an iceberg as it is clear that for many hospices the majority of our work occurs outside of the building within the community that we serve. Work that includes close collaboration with our colleagues from other organisations, including the NHS.
Instead of using inpatient beds as a static ‘lifeboat’, why don’t we launch this lifeboat of expertise, compassion and humanity and take it out into communities, care homes and hospitals? The ‘lifeboat’ would also come with armies of volunteers, trained and willing to support patients and their families. This is certainly the strategy we are taking at St Nicholas Hospice Care.
Anthony Waite warned that hospices can risk undermining others and I think hospices need to take this on board as we can be seen as elitist and lucky to have resources and time. Whilst we know that hospice care provides much-needed and valuable support to those people and families who need it most, we must look at how we can develop so that we can reach more people. So what can we do differently? Perhaps we need be much more focused on empowering others: patients, families and professionals, and less focused on rolling up our sleeves and doing it all ourselves.
We also cannot be complacent and wait for those who currently don’t access services to come to us: we need to actively go out and work in partnership with people in local communities and find out what their needs really are, not what we think their needs are. At St Nicholas Hospice Care we have developed Hospice Neighbours, a volunteer scheme that gives practical support and companionship to people at home. We have 130 Neighbours working in 13 teams in eight locations and have delivered more than 5,000 hours of support. We will also be opening our first outreach centre in Haverhill, 15 miles from our main building and taking a range of services out into the community.
So what else can hospices do differently? Following the Final Report of the Commission into the Future of Hospice Care (The Commission into the Future of Hospice Care, 2013) it is clear we need to reach more people and work differently to respond to ever-growing demand. Anthony Waite’s article was titled ‘When the Saints go marching on,’ so I’d like to respond by asking how we can work together to reach more people and how we can all ‘be in that number.’ Rather than diverting funds to other settings as Anthony Waite suggests, I propose that hospice organisations are ideally positioned to make dying better for more people if they use their resources wisely and use it to work alongside our colleagues in the community and acute settings.
St Christopher's Hospice (2013), St Christopher's Group Annual Review 2012/13.
St Nicholas Hospice Care (2013), Annual report and financial statements.The Commission into the Future of Hospice Care (2013), Future ambitions for hospice care: our mission and opportunity. London.