More dying people are seen later and in crisis, while those close to them accept more carer burden – more will suffer this winter, say specialists

• Almost two-thirds of end of life specialists (62%) surveyed concerned there is not enough capacity to deliver high quality specialist palliative care this winter
• Most (89%) agreed or strongly agreed that families and friends were accepting more emotional and physical burdens in providing care for a loved one
• Eight out of 10 also agreed that there had been devastating consequences of too many missed opportunities to refer frail and terminally ill patients 

More dying people and their loved ones could suffer if there is not enough specialist care this winter, say end of life care specialists in the UK.

In a new survey, carried out by the Association for Palliative Medicine of Great Britain and Ireland and end of life charity Marie Curie, two-thirds of experts had serious concerns that there won’t be enough professional capacity to deliver high quality palliative care this winter, as demand increases. The survey results featured in the Health Service Journal (HSJ) today. 

One respondent commented that, “As a community palliative care team we are already struggling to cover the hours of a 7 day service and we haven't even hit winter yet when the numbers of patients we support at home increases. This coupled with a GP service under strain makes me very worried for the months ahead.”  

Eight out of 10 end of life specialists also agreed that there had been devastating consequences of too many missed opportunities to refer frail and patients with life-limiting conditions for specialist support during the pandemic saying that lack of face to face contact with different healthcare professionals, for a variety of reasons, is leading to delayed care for dying patients. 

The survey of UK palliative care specialists – who provide care and support to patients with complex needs dying with and without COVID in hospitals, hospices and in the community – also saw professionals agree that families and friends were accepting more emotional and physical burdens in providing care for a loved one. 

Nearly 200 end of life care specialists participated in the ‘snapshot’ survey, between 28 October – 17 November, two-thirds of whom were consultants in palliative medicine. Numerous respondents expanded on the difficulties visiting restrictions in all settings had on both families and staff, with an overwhelming 92 per cent agreeing restrictions had a massive or great impact on their ability to provide high quality specialist palliative care.  

Another respondent said, “I have struggled watching families deprived of times with their dying loved one, and vice versa - the sadness makes my own soul ache. I chafe at the need to stay at a distance and not to shake hands, or to touch someone’s arm or hold their hand.” 

"The family is such an integral part of care, the visiting restrictions have complicated things immensely.”  

Dr Sarah Holmes, Marie Curie UK Medical Director, said:  “As more people continue to see us late and in crisis, now - especially during the winter - is the time to ensure there is plenty of resource and long-term funding in place to for people to receive the end of life support they need and that specialist staff are available for families at such a vital time. 

"We want to send people living with terminal illness and those close to them a reassuring message: that we’re here for them, and we will do our best to see them face-to-face if they feel safe for us to do so. The more planning we can do to ensure real person-centred care, the better the quality of end of life experience patients and their loved ones will have.”  

Dr Iain Lawrie, President of the APM, said: “As highlighted, visiting restrictions have been extremely difficult to deal with for patients, families and staff and there will be millions of people who have been bereaved throughout the year still struggling with their grief.  We must ensure everyone, including frontline staff, gets the support they need to tackle any difficulties they are having in dealing with dying, death and bereavement during such a difficult time.” 

The Marie Curie Information and Support line (0800 090 2309) can help with information about all aspects of end of life or grieving, whether you have practical, emotional or financial questions or concerns, or if you just want someone to talk to. Nurses are also available to talk to on the line. For more information, visit  www.mariecurie.org.uk/support   

Case study   

Susan Lowe’s mum, 74-year-old Sheila, was diagnosed with metastatic bowel cancer in January, and died at home on 22 April 2020. Susan, from the West Midlands, had to move in with her mum to help care for her while also working full time. 

“With lockdown meaning that I wouldn't be able to see my parents I decided to move in with them,” said Susan. 

“The next appointment with the oncology team was via telephone. The registrar called 4 hours after the original appointment time, told my mum that if she was worried about covid19 she could wait until after the pandemic before having chemo. It was obvious to me and my family that she didn't have that long (she died 2 weeks later). 

“The district nurses were good at sorting out a hospital bed for the last week of mum's life and coming out several times often during the middle of the night to give the palliative care drugs when her pain and agitation was too much. Otherwise I was left to manage her medication and personal care. It was too much for my dad to do. 

“I was working remotely so I was trying to organise my work while living with mum and dad. We had all different medical appointments happening and I was trying to arrange my work around that.  

“My parents needed me to listen in and write down what had been said because my mum was finding it difficult to take in. There had been a problem with my mum misunderstanding the advice around her medication and she’d started taking too much of it. We all realised I needed to be involved. I couldn’t afford to miss a call.   

“It was very difficult for me to do my job.”