By Ian Bailey, clinical design director, district nurse and Queen’s Nurse
Every year, more than 220 hospices across the UK do vital work in caring for over 200,000 people who have terminal and life-limiting illnesses. Around 80,000 of these people need expert end-of-life care, much of which is provided in the community.
Hospice at home services play a fundamental role in supporting these patients. They provide nursing services, complimentary therapies, and plenty more – basically, any care that a patient would get if they were to travel to a hospice, but in the more familiar and comfortable setting of their own home. Under the auspices of hospice at home, you’ll also regularly find that different professionals are working in partnership to provide one cohesive service.
Despite their different compositions, there’s one common thread that runs throughout all of these services: the type of support provided. Hospice at home clinicians work together to provide holistic support that accounts for a patient’s wishes and emotional wellbeing, not just their physical requirements. When it comes to end-of-life care, it makes all the difference to patients and those around them.
Making complex care less complex with technology
As you can imagine, even at the best of times it can be complex work, and not just because of the multiple parties involved. Usually the medical care is focussed around symptom control for a range of illnesses, including cancer, motor neurone disease, dementia and Parkinson’s disease, among others. These symptoms are often changeable and difficult to treat when related to just one illness; things are even harder considering that increasingly, hospices are caring for more and more patients who have multiple illnesses.
Care of this kind – that’s sensitive, collaborative yet intrinsically complex – really serves to show the excellent support that healthcare professionals provide. It’s also care of this kind that serves to show just how transformative technology can be to the running of hospice at home services.
The multiple healthcare professionals that are involved in a patient’s care all need to have instant access to a complete, chronological view of a patient’s record at the patient’s home if they’re to make truly informed decisions. Already available, this technology isn’t widely used. But if deployed throughout hospice at home services, it could bring real cohesion to care. In fact, it could make a massive difference to patients, their families and carers.
Ensuring that patients’ wishes are met by improving decision making
The stark figures of the 82% of people that say they want to die at home and the 50% of people who actually die in hospital are a clear example of why we need to look at changing how we organise and deliver care. Even if the difference between those numbers was smaller, there are two points that those figures highlight that would still hold true: patients should absolutely be able to die wherever they choose and we need to do our best to make that choice a reality.
To get to the crux of why patients’ wishes aren’t always met, we need to recognise that those that want to die at home often don’t because of an exacerbation in their condition that can’t be managed in a timely manner. We also need to recognise that much of this has to do with a lack of information sharing.
Put yourself in the shoes of a member of an end-of-life patient’s family, or their carer. If that patient’s condition deteriorates, the enormity of the situation at that time can mean that panic sets in. You’d likely phone 999, who’d very likely send an ambulance. Once the paramedics arrive, it’s likely that they’ll take that patient to A&E – which isn’t usually the most appropriate setting for such care.
But what would the outcome be if those paramedics could view a complete electronic health record at the point of care? Likely, entirely different. The paramedics could see that the hospice at home service is managing the patient’s care, and could contact them to get them to visit within a reasonable amount of time. The paramedics could even stay with the patient until that visit happens. Instantly, those involved can tell that it’s far less of an emergency than first thought.
Equally, technology can help to keep patients out of hospitals by stopping that 999 call from ever happening in the first place. While a lot can still happen in an unplanned way, detailed patient records can help teams to predict and therefore plan quite accurately. Family, carers and the patient can be kept better informed and made fully aware that there’s an extensive support package in place that can help at all times – including during an emergency.
Improving the health of our health services
While the benefits for patients, their carers and even health professionals are obviously apparent, supporting care with appropriate technology has wider repercussions for healthcare services as well. Around 50,000 patients die in hospitals each year that hospices could provide end-of-life care for instead. Doing so would save the NHS £80 million. When our health services are having to reshape to deal with increasing demand, that’s money that could go a long way.
We also know that, realistically, there aren’t enough hospice beds for those 82% of patients either, so if they aren’t to die in hospital, we need to make sure that they do die at home, in the place of their choosing. Ultimately, it’s better for everyone involved.
Helping patients to live well throughout their end-of-life journey
While we’ve been focussed on what will happen at the very end of a patient’s life, that’s only one part of the wider support hospice at home services provide. We also need to consider how hospices help their patients to live well throughout the time they have remaining.
To ensure that this happens, all of the healthcare professionals involved in a patient’s care need to be on the same page. For one, challenging work becomes even more challenging without this information. Quite often, patients genuinely don’t know the detail of what’s happened to them, so it’s hard to rely on their account. Secondly, working in this way doesn’t necessarily facilitate a positive experience. End-of-life patients should have the opportunity to be cared for by a clinician that’s familiar with their condition and history.
With information sharing, those challenges don’t even come into play. By accessing electronic health records, the clinician that delivers care in one moment seamlessly continues the care that’s been provided in the past by another.
Technology can help us to make patients feel more comfortable too. It’s well understood that the condition of an end-of-life patient can change rapidly. It’s why many hospice at home services will pre-emptively prescribe. When a patient starts to experience symptoms, irrespective of the time of day or night, clinicians can appropriately administer pre-prescribed medications if they have access to information. They can view dosages and advice on their administration. Not only does it reduce the acuity and immediacy of any symptoms, but it also makes the process much safer overall.
Key to all of this is that the patient is always at the centre of care. Without the distraction of information gathering, support can remain focussed – giving the patient the best experience possible.
Helping us to support carers and families during difficult times
The patient’s experience is not the only one we need to look at, though. Even in this day and age, it’s quite rare that a patient in the care of a hospice at home service doesn’t have elements of family carers or relatives supporting them, or even living in the same accommodation.
They’re often deeply invested, even if not actively involved, in that patient’s care. Ultimately, end-of-life care therefore encompasses the co-ordination of the patient’s relatives, not just formalised statutory care. Hospice at home healthcare professionals do vital work in supporting relatives and carers emotionally and helping them to cope with their loss. Every year, hospices provide 46,000 people with bereavement support.
It’s these two factors – the co-ordination of familial carers and support with their bereavement – that really show how beneficial technology can be to those around the patient too. In the same vein as viewing patient notes, if a healthcare professional can see details on family members and carers, they can more easily provide sensitive support while giving better informed advice. The visiting clinician can instantly get up to speed – even if it’s their first time visiting – and those around the patient feel guided and supported through what can be very difficult times.
We can attain gold standards for hospice at home services with technology
As we’ve seen, technology can really help to untangle some of the complexity that comes with end-of-life care. It supports collaboration and helps clinicians to deliver optimal care, factors that can lead to a wide range of individual improvements, from being able to meet a patient’s wishes to better support of a relative or carer. When combined, these individual improvements can cumulatively transform end-of-life care and ensure that we’re always delivering the sensitive, holistic and considered support that patients deserve.