Everyone dies. It’s a sad fact of life and a tough part of any healthcare professional’s day. Some deaths are unexpected, and hit us hard. Thankfully, there are those that we know are coming, and this gives us the opportunity to try to give that person a peaceful and comfortable end of their life, and for their family to be present and informed when it happens, or at the very least to have that choice.
If something acutely changes, or the person deteriorates suddenly, it can sometimes be very difficult for carers or families. Despite plans for end-of-life care to take place at a nursing home, it’s not uncommon for an ambulance to be called to attend. Transferring the patient to the emergency department can be inappropriate, and have negative consequences on both care of the patient, and the experiences of them and their family in the last few hours of life. In a busy emergency department, it can be difficult to provide the dedicated medical care and emotional support that is often needed. Often we try to get the patient back home or to a ward, where the atmosphere is a bit more relaxed, but with bed pressures and if death is imminent, this can all be very difficult to achieve, though I’d like to think we try our utmost.
In October’s EMJ, Georgina Murphy-Jones from the London Ambulance Service, and Stephen Timmons from the University of Nottingham have explored how paramedics make decisions regarding transfer to hospital for nursing home residents nearing the end of their lives. As they highlight in their paper, it’s difficult to know exactly how often this occurs, but these calls are complex, and there are often multiple factors in play to consider. Face-to-face interviews were conducted with six paramedics, which were recorded, transcribed and analysed to identify themes.
It’s a fantastic paper, and really gives a good insight into how paramedics think in these situations. It can be all too easy to blame our pre-hospital colleagues for bringing patients into hospital when they have an end-of-life plan to avoid hospital admission, and die at home or another preferred place. However, it’s important to remember that whilst emergency physicians operate in an information-light, time-critical environment, paramedics and ambulance technicians often have less facts than we do, and have to make decisions more quickly.
There are some really good take home messages here from the identified themes, and food for thought for your next end-of-life encounter.
- Paramedics find it difficult to understand patients’ wishes – in the experience of those studied, these wishes were inadequately documented or limited in content, sometimes just confined to a DNACPR decision. When nursing home staff were asked about their patients, they often did not know them or their wishes well. This made it difficult in an end-of-life situation to make a decision, as quite often the patient themselves was too unwell to express their desires verbally.
- Evaluating best interests is difficult – when patients lack capacity to make a decision, paramedics have to make it for them. It’s difficult to do this, particularly if this is the first time you’ve met someone and have limited information. Paramedics have to weigh up the risks versus the benefits of leaving the patient at home, or bringing them into hospital, and this can be even more difficult taking into account the next point.
- Everyone wants to have an input – decision to convey or leave at home is influenced by nursing home staff, relatives, and other pre-hospital professionals. There can be a lot of pressure from nursing home staff to transport the patient, even if alternate decisions have already been made and documented around end-of-life care. Paramedics who took part in the study described situations of conflict between staff, relatives, and patients, and the difficulties they face in trying to keep the patient at home when other parties disagree, even if the patient themselves does not wish to go to hospital.
It’s obviously hugely difficult for paramedics to make these decisions, but the overriding theme here is communication. So what can we do to help?
In order to understand patients’ wishes, make a best interests decision, and weigh up input from all parties, paramedics need to know the facts. Information about the patient, their condition, their decisions about end-of-life care, discussions with their family, and communication with other professionals involved in their care should be documented and easily accessible. It should be easy to see what the patient wants to happen towards the end of their life, and in what cases the patient should return to hospital.
Talk to the family
Dying relatives are hard. As a family, you want to do everything you can to help your relative. Sometimes, it’s hard to feel like you’re doing everything possible unless you call an ambulance, even if your family member is already in a nursing home, being cared for. Talking to families, not just about the decision to send the patient home to die, but also about what will happen later on once the patient is actually in the nursing home, is crucial.
Empower the nursing staff
From the paper, it seems that there were instances of nursing staff not feeling able or qualified enough to nurse patients who are dying. If we send patients to a nursing home to spend the rest of their life being cared for there, we need to be sure that the nursing home have the capability and experience to do so. This ties into the first two action points also. If we document clearly the plan, and inform the family as well, the nursing home staff will have a much easier time looking after our patient, with less ambiguity. If your patient is being discharged, phone the nursing home, speak to the manager, and let them know what’s going on. The GP needs to know as well!
Support your paramedics
Not only to help them make decisions in the nursing home, but also when these patients do arrive in our ED. They’ve had to make some tough choices, usually under pressure from staff or family members, and some that they might be disappointed with because they feel it’s not the best thing for the patient. But, they’ve done what they can, in the time they had, with the information they had. We need to support them through these difficult decisions, not criticise them.
Much to think about regarding end-of-life care, and hopefully from reading the paper, and assessing needs in our own practice, we can try to ensure more people can achieve the death they want, in the place they want to die.