End of life care: what thousands of nurses told our annual survey
Responses to the third annual Nursing Standard-Marie Curie survey highlight short-staffing pressures and how some staff spend their breaks sitting with dying patients
- More than 5,300 UK nurses and healthcare assistants took part in our third annual survey with charity Marie Curie
- Results show staff are doing their best for patients, but are feeling hard-pressed due to staff and resource shortages
- Even some hospice staff say pressures have increased due to higher demand and less qualified staff
Almost two thirds (65%) of nurses say staffing shortages are the main barrier to providing good care to dying patients, an exclusive survey by Nursing Standard and Marie Curie reveals.
Nurses in their thousands, from across acute, community and hospice care around the UK, have spoken candidly about the impact staffing is having on end of life care provision.
Not enough staff or time
One emergency nurse told of feeling ‘upset and frustrated’ at not having enough staff or enough time to care for dying patients. Another said that finding ten minutes to sit at a bedside is difficult, while one admitted: ‘There just aren’t enough staff, resources, funding, time to care. It’s heartbreaking.’
'There seems to be more fragmentation in services, which affects vital continuity of care for patients and their families’
Julie Pearce, Marie Curie executive director of nursing and allied health professionals
In total, 5,346 UK nurses and healthcare assistants took part in our third annual survey conducted with the charity Marie Curie. Overall, their responses identify staffing levels and time as the two key barriers to high quality care.
One in three
nurses say they are not sufficiently supported at work to manage grief and emotional stress from caring for dying patients
The findings come amid escalating concerns about the shortfall of nurses across the UK. The RCN has repeatedly called for government action on the nursing shortage, which stands at an estimated 40,000 in England alone, and which it says threatens patient safety and care.
Marie Curie executive director of nursing and allied health professionals Julie Pearce says: ‘The results show that in the NHS and the caring sector, staff are doing their best to do the right thing for patients, but are feeling hard-pressed.
'There seems to be more fragmentation in services, which affects vital continuity of care for patients and their families during a very significant part of their journey through life and death. There is only one opportunity to get end of life care right for people, when it doesn’t go well it can affect a family for many years.’
Nurses, particularly those from busy acute wards, spoke about how they had to look after as many as 12 or 13 seriously unwell patients and struggled to find the time to provide the care they wished due to other demands.
One respondent said: ‘On the busy ward, I've got a feeling that I might neglect patients in their final stage of life.’
In response to the question about whether staff have enough time to give the care they want to, another said: ‘As an NHS nurse in a chronically understaffed and underfunded sector, I can’t believe anyone can honestly say yes.’
‘I feel we have to give urgent care the priority... I often spend my break with the end of life patients and their families’
Many respondents spoke about how they always made time for end of life care, but often this meant using their breaks to sit with patients or families. One said they provide care to the dying ‘at the detriment of other patients’.
‘Unfortunately end of life patients in my area are on the same wards as acutely unwell patients,’ one commented. ‘I feel we have to give urgent care the priority and it leaves me and my colleagues feeling very frustrated, and I often spend my break with the end of life patients and their families.’
‘Unable to do everything – but we do our best’
Many nurses said they did everything they could to give the best care in difficult circumstances. ‘We provide the highest quality care we are able, given the emergency environment and atmosphere,’ one said. ‘Often we are unable to do everything we want to but we do our best.’
Another said: ‘I make the time with patients and relatives but this impacts on non-clinical time and unpaid time.’
of respondents said they always or often witnessed delayed discharge for end of life patients
Staff in emergency departments repeatedly voiced their concerns in the survey that their area was an inappropriate setting for providing end of life care. ‘Working in a busy A&E department it can be upsetting and frustrating not having enough time or staff to give patients the care and time they need.’
While some hospice respondents said they had all the time they needed, even in this specialist environment some said staffing pressures could limit the care they wanted to give. ‘The hospice has become busier and less qualified staff means that care and extra time is sometimes compromised,’ one hospice worker said.
What does high quality end of life care look like?
According to Marie Curie, end of life care should be person-centred: focusing on the patient’s needs as an individual and giving them the opportunity to make informed decisions about their care and treatment, in collaboration with their health and social care practitioners.
Points for nurses and other healthcare professionals to remember:
- Follow local guidelines for caring for people at end of life. There are different guidelines covering England, Wales, Scotland and Northern Ireland
- Communication between staff and the dying person should be sensitive, clear and timely
- Involve the dying person and those important to them in decisions about their care
- Identify each individual’s physical, psychological, social and spiritual needs, and meet these needs as far as possible
- Meeting a person’s needs may require many members of the multidisciplinary team
- Offer support to the dying person’s family, carers and others important to them
- People with a terminal illness should be given the opportunity to make an advance care plan
- Caring for someone at the end of their life can be distressing. Look after your own well-being and ask for help and support if you need it
For more information, visit Marie Curie’s palliative care knowledge zone
RCN professional lead for long-term conditions and end of life care Amanda Cheesley said safe staffing legislation is needed to protect palliative care.
‘Staff shortages are placing nurses under intolerable strain right across the NHS, and it is not surprising that nurses caring for people at the end of life feel unable to provide the level of care that these patients and their families expect and should have.
‘With a current shortfall of 40,000 registered nurses in England alone, it’s time for the government to change the law so that ministers and local NHS providers are explicitly accountable for making sure the NHS is safely staffed.’
Patients stuck waiting in hospital
More than nine out of ten respondents (92%) have seen dying patients stuck in hospital waiting for arrangements to be made to allow them to leave.
The survey found almost half of respondents (48%) always or often see delayed discharge for end of life patients. Only 8% said they never see this happen.
Insufficient community care, a shortage of hospice and nursing home beds, poor communication between services, waits for equipment and transport, and slow approval of funding were among the problems highlighted by nurses.
‘Fast-track discharge has not been “fast-track” in my experience with some patients remaining on the ward weeks after that decision has been made’
Many said that arrangements intended to help dying patients leave a hospital setting were not working. Several respondents highlighted patients dying in hospital because so-called ‘fast-track’ programmes often took two weeks to arrange.
‘A continuing healthcare fast-track discharge has not been "fast-track" in my experience with some patients remaining on the ward weeks after that decision has been made,’ one said.
Many, including district nurses, said there was insufficient community care for patients who want to die at home. ‘Often they want to go home for a short time and there is not adequate care in the community for them to do that,’ one respondent says.
‘Most of the end of life care that I give is for single people with no family, they all say that they would prefer to die at home.’
Caring for dying patients: the personal toll on nurses
A third of nurses and other caring staff (33%) are not sufficiently supported at work to manage grief and emotional stress from caring for dying patients and their families, the survey found.
Nurses reported they often felt the need for extra support, but lack of time and short staffing made even the chance to debrief with colleagues difficult.
‘When I was on the ward if the patient had passed away we wouldn't stop because we have other patients to look after. It's never easy for nurses,’ one respondent added.
Another said: ‘Recently, clinical supervision stopped due to shortage [of] staff’.
Many respondents reported that they drew support from colleagues and expressed the value of a strong team. ‘We have a good working relationship with all staff and support each other through difficult and emotional times,’ one said, while another commented: ‘The support I have received over the years irrespective of which trust has been from colleagues. I have yet to find a trust who takes the emotional well-being of their workforce seriously.’
Some reported that senior staff seemed to have little idea of the impact caring for patients at end of life could have. ‘[I] had ten patients die within six weeks, five aged 45-55,’ one respondent said. ‘Spoke to manager about lack of support for staff – was told if I needed management support perhaps I was in the wrong job.’
Another said: ‘We are not properly trained to deal with grief or emotional stress. I feel like people think as nurses we should be use to it and just get on with it.’
‘When I was on the ward if the patient had passed away we wouldn't stop because we have other patients to look after’
One in five respondents were not aware of their employers having any support system in place to help staff manage feelings of grief and emotional stress. Only 14% said the systems were in place were very effective, and 18% reported these systems were easy to access.
The survey findings add to concerns that many nurses are being left burnout and emotionally exhausted by their work. Research has shown that nurse burnout and fatigue are associated with patient dissatisfaction, adverse patient outcomes, including medical errors, more healthcare-associated infections, and more hospital readmissions.
‘Organisations should invest in staff well-being’
Marie Curie executive director of nursing and allied health professionals Julie Pearce says: 'In order for staff to care for patients and their families in a compassionate way, organisations should invest in the health and well-being of staff and the type of support they offer.
‘Providing this support for staff as well as good, effective clinical supervision, is a key area for us as an employer.'
Some nurses said there were good systems in their work places, with access to services such as counsellors, reflective practice and debriefing. Some nurses said staff at their local hospice, Marie Curie or Macmillan team would support them.
Others spoke of the benefits of Schwartz rounds, regular forums offering healthcare staff the chance to share experiences with colleagues, and discuss challenges they face.
Others found that although support services were said to be available, accessing them was difficult. ‘Most trusts will have policies in place to support staff in times of emotional stress,’ one comment said. ‘The lack of time and personnel will make them unlikely to provide much more than lip service.’
No emotional support
One hospice worker said: ‘There is no emotional support or supervision for staff apart from making an appointment with the chaplain. I was totally surprised by this as I found there was more support on a hospital ward for staff.
‘I often feel that I can't sleep as it has upset me when a patient dies. I have tried to discuss this with other staff members but told there is no feedback or reflection so we have to find our own support elsewhere.’
RCN members can access free, confidential support to deal with challenging or emotional issues at work. To make an appointment, call 0345 772 6100 between 8.30am and 8.30pm, seven days a week, 365 days a year. Or find out more on the RCN website