Improving end of life care within care homes is a national priority; Jill Turner, Macmillan palliative care nurse for care homes, describes work that she has undertaken within North East Lincolnshire with a partnership approach to improving palliative and end of life care.
North East Lincolnshire’s key organisations including health and social care providers, hospice and local authority, work in partnership in the continued delivery and improvement of palliative and end of life care. The delivery of the Locality End of Life Care Strategy is overseen by a partnership board and delivered by an implementation group. One of the key aspects to the strategy and a key member to the group are care homes.
North East Lincolnshire has around 68 care homes, eight have nursing beds and the rest are a mix of residential homes offering care to patients with learning disabilities, dementia and general frailty. To provide a consistent approach to care and to engage care homes in this most important aspect of life, it was decided in 2008 to dedicate improving end of life care within care homes to one of the Macmillan specialist palliative care team.
The remit was to improve:
- symptom control
- psychological support/spiritual support/family support
- bereavement support.
As well as delivering regular training, including subjects like syringe drivers, symptom control, Liverpool Care Pathway, end of life care, breaking bad news and contributing to other key service developments including end of life care for people with dementia in a care home, the role is crucial in the continued support of staff within the home giving advice about symptom control, breaking bad news and helping to meet someone’s preferred place of death. But more important the role is about orchestrating people’s choice for end of life care; this involves discussing with people and their families their preferred place of care, DNACPR (do not attempt cardiopulmonary resuscitation) and plans to avoid inappropriate hospital admissions.
The post acts as an advocate for the care homes, making links with other providers that can assist to support the person. This involved a lot of education and partnership working between the care homes, allied community staff and out of hours providers as the ‘easy option’ can sometimes be to send the individual to A&E, which can lead to a unnecessary hospital admission. By working together, including the person and their family, we can act in the patient’s best interest at the end of their lives, which is usually to stay in the care home with additional support.
In North East Lincolnshire each care home has an end of life care champion, which can be the manager, nurse or care worker. Each champion attends the Care Home Links meeting, which is always well attended. The Care Home Links group covers palliative and end of life care issues and provides information on ‘what’s new in palliative care’, a teaching element around subjects chosen by the group (during the past year these have included, What is palliative care?, 10 things to observe when a patient has a syringe driver, How to look after yourselves when dealing with death and dying, bereavement support, drug calculations, Gold Standards Framework) there is also a question and answer/group discussion section for the care home staff to discuss problems they have encountered in their workplace and how to deal with them and also a section on sharing good practice.
Although the education and support of the care home are crucial and are key in improving end of life care, the role provides support to families who often feel guilty in seeing their loved one in a care home. I was once asked to visit a family who were convinced that care home staff were starving their mother to death when the Liverpool Care Pathway (LCP) was commenced. The lady had only been with the care home for three days after been admitted as the family could no longer cope with her deterioration at home. On admission she was frail but eating and drinking small amounts. The daughters were angry and were trying to feed their mother baby food whilst care home staff were absent with a hope that this would be improve her condition. The lady was unconscious and unable to swallow.
I met with the family and the nurse on duty together. I described the LCP to the daughters and explained the goals of care. The care home nurse showed the daughters how to give mouth care and encouraged them to help staff with aspects of personal care where appropriate. The daughters had an opportunity to discuss their feelings and how they felt they had let mum down not keeping her at home. They appreciated the chance to help with their mum’s care and to be able to stay with their mum in the care home. The lady died the follow day with her daughters present. After her death the care home staff reported that the daughters felt their mum was “special” because she’d been on the LCP and the care she and they had received, and acknowledged the relief of being allowed to be “daughters“ during the last days of life rather than carers.
I have seen and actively worked with nearly 400 people since my post started at the end of 2009, for which we have been able to achieve preferred priorities of care for 88%. The outcomes that have been achieved and the success of the work undertaken has received funding for two additional posts working purely to support people resident in care homes.
The benefits of my role have been many fold. The care home champions have embedded the Gold Standards Framework into their practice for patients at the end of life and they have a better understanding of recognising when a patient is dying and are proactive in taking steps to initiate the request for DNACPR, anticipatory drugs, patient handover care plans and appropriate commencing of the LCP.
I have provided LCP training to more than 300 care home staff and the appropriate use of the LCP has risen in the past 12 months, promoting confidence in the use of the tool. An estimated figure for appropriate avoided hospital admissions at the end of life from care homes is approximately 72 per year; this is through training and improved communication skills. The staff now feel they have the confidence to care for the patients in their care setting and also to sometimes appropriately challenge the decision where the best place of care is for their patients.
Communications training has been delivered and further workshops around breaking bad news, DNACPR and advanced care planning has been planned for later this year. All homes have all been provided with a palliative and end of life resource pack to keep in the home and update accordingly, including syringe driver guidelines, LCP guidance, symptom control guidelines and bereavement booklets. Together with empowering staff through training, practical support and guidance from myself, the care homes have raised standards in achieving patient’s choice in preferred place of care/death and reducing numbers of inappropriate hospital admissions at end of life.
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