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Professional: palliative care nurse

With primary care being the key source of external support for care homes, wider access to provisions is critical.

Despite community care provisions forming the core source of day-to-day support for care homes, there have been worrying concerns that care home staff are not getting the wider access to support they need from primary care.

Winner of the Lifetime Achievement Award at the International Journal of Palliative Nursing Awards, former intensive care nurse, Jane Seymour, who has conducted groundbreaking research in end of life care over the last 20 years, says: 

“About 20% of all deaths now take place in care homes. There are half a million beds in care homes in the UK, many many more beds than there are in the acute hospitals now, yet we know comparatively little about the quality of end of life care in those settings.”

Emphasising that a contributing factor to compromising the quality of care was a lack of the necessary level of support from primary care, Jane says:

“So although those patients are NHS patients the same way that you or I are, they often don't get the excellent GP care or district nursing care that they need because of commissioning practices.”

A study of 180 care homes in two localities, carried out by mother of two, Jane, and her team in 2010, found that barriers against obtaining the required support included GPs being distrustful of the knowledge and competence of care home 

staff as well as being worried about repeated calls on their time and expertise.

According to Jane, who trained as a nurse between 1979-1982 before undertaking a PHD in end of life decision making in intensive care, this translated to GPs being 'reluctant' to prescribe appropriate medication to patients who are dying, a lack of out-of-hours support and access to training for care home staff. 

It was found that nursing home staff were sometimes also excluded from multi-disciplinary team meetings at GP surgeries, which might otherwise have been opportunities for them to develop networks of additional support and receive ongoing education in end of life care.  

Similarly, for district nurses, with a role in nursing homes having never been formally described as part of their duties, there were concerns about the potential addition to their workload and 'inappropriate' requests from care homes.

However, when one of the nurses finally reluctantly ventured 

to the care home, the request was far from inappropriate as it was to lend support with setting up a syringe driver. With this 

lack of support in a fundamental element of care mostly likely exemplifying a much wider phenomenon, this raises important concerns.

“Primary care staff can have a bigger role, but are under huge pressure, so they don't get sufficient resources to give the support to patients that need it, and that's very very challenging.”

Improvements that could be made to commissioning practices involve a commitment to providing stable funding streams for posts such as end of life care facilitators and education trainers, and a more engaged and informed mode of commissioning than has previously been in place. More GP engagement would perhaps also mean wider access and knowledge about end of life care tools, the implementation of which was found to be related to an improved quality of care rating in care homes in Jane's study.

In the study, a stakeholder observed that the attitude seems to be to 'commission the service and then walk away' with the assumption that nursing home fees and assessments are likely to cover all the needs that residents are likely to have rather than continuous support.

Given that it is largely the elderly that die and an increasing number are doing so in nursing homes, quality of care in nursing homes must be seen as integral to the wider mission of improving end of life care in local communities. 

As such, Jane said that commissioners must enable nursing homes to access the outside resources that they need to provide 'equitable' care to their residents.

Jane emphasised that nurses have a particularly pivotal role in end of life care, making investment into support for them especially critical. 

In a study carried out by Jane and her team last year, funded by Marie Curie, which looked at nurses' roles in symptom control in the community, it was found that specialist, district, and care home nurses very often took a leading role in coordinating the care of patients approaching the end of life. 

They also had an important role in explaining what was happening to patients and their families as well as an advisory role with GPs. Despite their central role, their responsibilities were not always recognised, which Jane said led to them finding their responsibilities 'burdensome' and making it difficult for them to provide that aspect of care.

“When patients are coming towards the end of their life or if they have a long-term illness, that's a very difficult time for families, so, nurses can play an absolutely key role in whether that's going to be a good experience for families or not. If we don't in turn recognise that that takes time, resources and energy, then it can be burdensome for nurses, and patients and their families are not going to have such a good end of life experience as they could have.”

Jane said that support for nurses could come from a variety of sources including charities like Marie Curie or Macmillan. Universities, and hospices could run short courses while clinical commissioning groups (CCGs) could play a role in continuing professional development.

   A roll-on effect of the lack of investment of primary care into end of life provisions has meant that a large number of people are still being admitted to hospital in their last moments as unplanned emergencies, six years on from the end of life care strategy, published in 2008. 

  According to a critical report recently published by the Royal College of Physicians (RCP), less than half of NHS patients who were in their last hours or days were told that they were dying by hospital staff.

“There have been some great improvements in end of life care since end of life care strategy was published in 2008, but unfortunately, many many people in the last few weeks/months of life are admitted to hospital as an unplanned emergency. This is either because they don't have relatives who can care for them or they're living in a care home and the staff struggle because they can't access timely and excellent medical nursing help or because family carers who are trying to care for somebody become very worried and anxious.” 

While a focus has often been put on the fact that over half of people are still dying in hospitals despite most wishing for a peaceful death at home, Jane says that she considers the 'unplanned' element in admissions the main problem as the 'mad dash' to hospital is extremely stressful.

 “Sometimes you can foresee what the last few weeks are going to be like. We know it's going to be challenging and we know it's going to be difficult. It's a case of trying to make sure that there's a number they can call, somebody they can speak to. Carers, whether they're care home staff or family carers, have then got more support around the clock.”

There is a difficulty around determining when the point of 'end of life' begins however, which is confounded by the current model around which palliative care is based. Classically, the palliative care model developed by Sicily Saunders in the 1960s was developed with patients who were dying relatively quickly from advanced stages of cancer, and so the dying trajectory was relatively clear and short.

“The issue we have now is that many patients—patients with dementia would be a very good example—have got a high level of support needs, and they may have difficult physical symptoms as well as emotional issues and cognitive impairment capacity. But they're going to need care over a much more longer period of time, so definitely the trajectory of death is longer, and finding a way of providing a good standard of palliative focused care for much longer is a really big challenge.”

Jane says that rather than focusing on whether patients are dying or not, it's better to look at whether their needs are being supported and focus planning around that.

“The idea now is you tend to think of patients needs rather than think about whether they're dying or not. You try to look at whether they have particular support needs which means focus on comfort and quality of life relevant to their care, to me that's what end of life care means - recognising someone is at risk of life and putting in the right kinds of support to improve their quality of life and the quality of life of their carers as well.”

“I think there's a huge potential for some forward planning done in the community and for that to be given much more of a priority. If I'm completely honest, I don't think there's been a big emphasis on forward planning or contingency planning. From patients and family carers points of view, that's one of the biggest problems, they don't often know what's going to happen next or who's going to be responsible.”