Palliative care – how we support the carers

Professor Gunn Grande is speaking at the Annual Marie Curie Palliative Care Research Conference 2017 held in London tomorrow. Marie Curie jointly hosts an annual research conference with the Palliative Care Section of the Royal Society of Medicine. It is attended by Marie Curie staff, but is also open to other healthcare professionals.

‘We don’t know exactly how many people are caring for dying relatives or friends at any one time, but we think it could be around half a million in the UK. They are men and women of all ages – some are children – and they all take on the responsibility to support their loved ones as they reach the end of their lives.

What we do know is that they need support and help to fulfil this role, which is challenging both mentally and physically. One issue is identifying who they are – many people in this position don’t identify as carers at all, seeing themselves simply as husbands, wives, sons or daughters.

So, as clinicians and healthcare professionals, we need to take this as a starting point and ask a dying patient, ‘who is the person who gives you the most help and support?’

Once we have established the individual or individuals who are taking on the role of carers, we then need to properly explore with them what they are struggling with and what they need to make this easier.

Main concerns for carers are about gaining the information and know-how they need to care for their family member or friend with confidence as a lot of carer distress stems from the uncertainty involved and not knowing what to do. It may also, for instance, be that financial worries are a major factor and a person needs simple help with filling out forms or applying for additional benefits. In some cases, carers may need counselling to help them deal with the trauma of facing the loss of a loved one. However, we need to ask the individual what they need to ensure that the burden is not so heavy that they can’t cope at all. There is no one-size-fits-all solution.

Unfortunately, the level of professional support for people who are in the process of dying does depend on where you live. Like many aspects of healthcare in the NHS, there is a so-called postcode lottery.

So some carers will be given more free assistance than others. But all carers should be able to access help to ensure that they can continue to fulfil their vital role without breaking under the strain. Their help is willingly given, but they should not be taken for granted.

In the long term, it’s well worth looking after these carers, who save the NHS millions and greatly improve the quality of life of the person who is dying. Figures show clearly that you are much more likely to die in your own home if you have a family member to help look after you. Most people say they would prefer to stay at home for as long as possible during their last illness, and if possible, die in familiar surroundings.

After someone has died, their carers are left to face bereavement, often with little outside help. We know that if they were distressed and struggling while looking after their loved one in the final stages, they are more likely to carry this distress with them into bereavement. We are likely to improve outcomes if we give carers the right help and information during caregiving.

The ageing population means that more and more people will find themselves in the position of caring for dying relatives. Given the increased reliance on carers we need to find ways of ensuring they feel more empowered and supported. Investment in supporting carers now is likely to provide gains longer term.