Hospice UK’s CEO Tracey Bleakley writes about the importance of supporting end of life carers.
“Unless we support the carers, the carers are not going to support the patients, then we are all going to be struggling”, Ewing and Grande (2018).
Anyone involved in delivering end of life care knows we could never hope to meet current and future need without relying on the hidden army of unpaid family and community carers who work long hours without respite to care for loved ones. At Hospice UK, we recently launched a report with practical recommendations on how to support end of life carers entitled: Providing comprehensive, person-centred assessment and support for family carers towards the end of life: 10 recommendations for achieving organisational change by Gail Ewing, University of Cambridge and Gunn Grande, University of Manchester[i]. I wanted to explain why we feel it is so important to invest in caring for carers.
Carers have an essential role to play in palliative care with over 500,000 people estimated to be providing end of life care each year in the UK, however only a very small proportion of carers are ever formally identified. This hidden army plays an essential role in end of life care providing physical, spiritual, psychological, financial and social support to friends, relatives and the wider community. More than 10 per cent of the UK population is estimated to have a caring role at any one time with many of these carers supporting people through the end of life stage. We know that carers share in the emotional experience of those they are caring for through illness and that support extends to both physical care and “emotion management”. Hospices and palliative care providers have a dual role to play in supporting carers – firstly as colleagues providing care, and secondly as relatives facing loss and bereavement.
The first recommendation in the report is to develop consistent and proactive ways of identifying carers. This is difficult as anyone can be a carer, people move in and out of caring roles, and only half of carers live with the person they are caring for. Some carers are reluctant to be identified because they fear that being labelled as having caring responsibilities will damage their career prospects or mark them out as being different from colleagues and peers. Caring responsibilities often increase gradually so the transition from family member to carer often goes unnoticed.
Because patients become dependent on their carers, carers are themselves vulnerable and are sometimes in need of professional care. It is understandable that carers’ needs are often overlooked as health professionals have a contract directly with the patient that is focused on helping them recover their wellbeing and independence. Without a direct psychological contract with the carer, this mind-set may work against the needs of carers whose own wellbeing may be sacrificed against the need to discharge the patient from formal healthcare and back to independent living. However, identifying and supporting carers can help achieve improvement and independence for the patient at the same time as improving future health outcomes for the carer themselves.
Ewing and Grande (2018) argue that policy makers must decide if carers are legitimate “clients” of the health service in their own right and that if so, commissioners must fund and provide carer assessment and services to support this group. Many local charities such as Carers Trust, Carers UK and local hospices provide support groups and advice for carers, however there is no national provision. The report also notes there are few local carer champions and that role-modelling can be an effective way of changing behaviour. A possible way forward is for GP practices to appoint a carer champion (which could be a voluntary role) to signpost identified carers to local support services and groups.
Carer wellbeing can be negatively affected through three distinct stages: the distress caused by witnessing a loved one’s last stages of life and sharing complex emotions; the emotional and physical toll of carrying out caring responsibilities; and the emotional and social impact of bereavement and loss.
Carers are now increasingly elderly and often have underlying, complex health issues of their own, with no upper age limit on being a carer. Becoming a carer is often a gradual process, with the dying person’s needs often prioritised and the responsibilities towards carers of those at end of life being ambiguous and little understood. Caring responsibilities can increase slowly until the carer becomes ‘engulfed’ and often isolated and overwhelmed. There is evidence to show that using a Carer Support Needs Assessment Tool (CSNAT) for end of life carers can significantly improve physical and psychological health and have a long term improvement on the impact of grief.
There are clear implications for practice. Firstly, health practitioners will need training in the identification and support for carers, which will need to be based on evidence-based protocols and toolsets. Communications pathways will need to be developed to broach the sensitive topic of caring without causing distress to family members and friends. Community nursing teams will need to devote additional time to home visits if they are to adequately assess and support the needs of both the patient, and potentially multiple carers. Many hospice at home teams already routinely carry out this service as hospice care is defined as supporting the family, friends and community as well as the dying person.
As the report demonstrates, unless health professionals support carers to look after their own wellbeing at the same time as looking after the patient, then both patient and carer health will be negatively impacted.
But we need to go further and consider carers as both “co-workers and clients”. In many cases carers can and are full members of the multi-disciplinary team meaning that carer education (such as lifting and falls prevention), can significantly reduce anxiety. We need to remember that levels of carer education can vary widely dependant on their background, education and life experiences; the length and depth of the relationship with the patient; and the level of interaction and explanation given by clinical staff.
Collaboration between carers and health care professionals is essential if the patient wishes to remain at home rather than receiving care in a hospital, hospice, or care home. Carers can find their role hugely satisfying and it is often offered willingly. The appropriate training and support can only increase the satisfaction of a job done well and encourage more people to view strong role models and engage in caring in the future.
The Queens Nursing Institute and Marie Curie both provide interactive training videos for carers on their websites covering topics such as safe lifting and handling, helping a patient to the toilet with dignity, and making a bed with someone in it (the former aimed at teaching health professionals to train carers, and the latter aimed directly at carers themselves). In order to improve carer proficiency, such online training should be used in addition to providing reflective guidance, resilience support and mentoring as would be given to other healthcare professionals within the multi-disciplinary team. This in turn will improve the care provided by the unpaid workforce and reduce the stress and wellbeing implications on carers, thus improving the efficiency of the multi-disciplinary team.
Many family carers have been looking after their loved one through many stages of the condition they are now dying from, and have more experience in treating and supporting the patient than most healthcare professionals will have. They have earned the right for their decision making to be respected. Ad-hoc caring networks often form over time and should ideally be preserved and enhanced by professional healthcare rather than replaced or supplanted, both from a cost, and from a quality and continuity of care perspective.
I believe that more research needs to be undertaken on network centred care (rather than person or profession centred care). It is likely that this will increase or change the risks inherent in providing care and this must be understood. Patient, carer and professional perspectives need to be taken into account and outcomes tested. Whilst the implications on current practice are significant in terms of the amount of change needed, this is potentially the only way current healthcare structures will be able to manage the rising demand for palliative care in the UK.
Hospice staff working in the in-patient units often say that family members report relief that they are no longer required to be a carer and that they can concentrate on being a family member again in the last days and hours of their loved ones life. It is inevitable that when carrying out two roles at the same time, one can take over to the detriment of the other, and the need to provide care is often more acute than the need to share memories and resolve relationship issues.
Ewing and Grande (2018) found critical gaps in carer assessment in practice, leading to uneven support for end of life carers. Reviewing carer feedback, they discovered discrepancies between research and evidence findings, policy aims and reality. They argue that because records systems are patient focused, there is a lack of data on ongoing carer needs, that carer assessment and support is dependent on local workforce capacity and that (although rare in practice), carer champions and role-modelling can have a significant impact on the quality of carer support.
If you have not had a chance yet to review the report, please do take a look. With ten clear, practical recommendations there is much we can do locally to improve the care and support of carers. Given their role in the clinical workforce and our duty to them under holistic, hospice care – can we afford not to?
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