End of life care: finding out what matters to the families and carers of dying patients
The programme that helps nurses see care through the eyes of patients’ loved ones
How the Walking the Walk programme helps nurses see care through the eyes of patients’ loved ones
- Nurses accompany a carer on a visit to a hospital, to gain fresh perpective on the experiences of those with dying relatives
- The ‘walk’ traces a typical hospital journey for loved ones and carers, and includes clinical areas and the mortuary
- Feedback enables staff, hospitals and organisations to identify areas for improvement, as well as good practice
A team of nurses and carers are helping hospital trusts to improve end of life care by following the difficult journey of dying patients and their families.
Nurses Claire Henry and Marie Cooper are working with people whose loved ones have died in hospital to gain a ‘fresh eyes’ perspective on the experience of patients and their families.
By accompanying a carer on a visit to a hospital – ‘walking the walk’ that they would each day if they had a relative who was dying there – they can identify good practice and suggest improvements, ranging from addressing small environmental issues to larger culture change.
‘For dying patients and those important to them it is unchartered territory and a time of huge distress and bewilderment’
Claire Henry, independent consultant nurse
‘With around 50% of deaths occurring in hospital, caring for people who are dying or bereaved is an everyday occurrence, so it is important that hospital staff are providing good quality care,’ says independent consultant nurse Ms Henry, who leads the team.
‘For dying patients and those important to them it is unchartered territory and a time of huge distress and bewilderment.’
Understanding what matters to carers and families
For carers it is often the small things that matter says Ms Henry, a visiting researcher with the palliative and end of life care research group at the University of Cambridge. ‘We know that staff want to get it right but they don’t have the insight to see what it is really important to carers at that time.’
For the programme, called Walking the Walk, Ms Henry adapted the experience-based approach of the NHS England Fifteen Steps Challenge and the King’s Fund’s Enhancing the Healing Environment for end of life care.
People with a lived experience contributed to the adaptation to ensure it is sensitive to their needs. Two nurses and two carers from the programme go on each walk and so far 20 institutions have participated.
‘Being seen as non-judgemental is crucial’
Nurses at the hospitals have responded positively to the visits.
‘The clinical staff know you are not criticising their clinical skills and that you understand the pressures and challenges of the environment they are working in,’ says Ms Henry. ‘We are pragmatic, which has been highlighted in the feedback we receive.
‘It has proven to be an incredibly motivating and stimulating experience’
‘Nurses are good at working across the multidisciplinary team. Our communication skills are important and often nurses are good listeners and observers – that is how we assess our patients. We have been able to adapt these skills and use them in Walking the Walk. And being seen as non-judgemental is crucial.’
The project’s nursing team spends a day with a carer, following the journey they would take if their loved one was dying in hospital. They start at the hospital car park and review public areas that carers use – from reception to the patient advice and liaison service – as well as the information carers are given.
They also review clinical areas – from the emergency department, medical assessment units, mortuary and bereavement suites – and speak to clinicians, accompanied by a member of the clinical staff. ‘This gives that staff member a valuable opportunity to see the areas and their hospital from a different perspective.’
How the programme is implemented
- In the first phase of Walking the Walk, funded by NHS Improvement, Claire Henry and her team worked with 12 trusts that were rated by the CQC as ‘inadequate’ or ‘requires improvement‘. The second phase, working with eight trusts and hospices with mixed CQC ratings, was funded by NHS England
- Both programmes were initially a collaboration between the NHS and the National Council for Palliative Care and, following a merger, with Hospice UK
- For the current phase, the third, the work as an independent team under Claire Henry Associates, offering the programme to hospitals directly alongside training so hospital teams can use the approach themselves and in other clinical areas
Sometimes issues identified are small and easily changed
The day ends with a one-hour feedback session, which can be attended by board members, nurse directors, medical directors and consultants and clinical teams.
‘We give insights and it has proven to be an incredibly motivating and stimulating experience,’ says Ms Henry. ‘There is immediate discussion across the teams.’
‘The walk-through gave us a new perspective that we could never see as staff’
Feedback from hospital staff
The hospital receives a written report three weeks later. ‘Sometimes the issues that we identify are small and can be easily changed – sometimes even before we leave,’ says Ms Henry.
‘Others might need small resources to make a big impact and others might need investment or cultural change. For example, at one place the healthcare staff were breaking bad news in a room that where staff were coming in for their tea or coffee. But the walk through is also a chance to celebrate and highlight good practice throughout the hospital.’
Changes introduced as a result of Walking the Walk have included reviews of information available for patients and families and improved signage. One emergency department improved its family room and in other hospitals the mortuary and bereavement facilities have been refurbished.
How to make Walking the Walk a success
Tips from independent consultant nurse Claire Henry for conducting Walking the Walk days to improve carers’ experiences of care:
- The input and feedback provided by experienced carers is essential. It offers a unique and critical lens that professionals do not have. Healthcare professionals cannot mitigate certain practices or conditions within the care environment without proper examination
- Adopt a quality improvement approach and language: What’s good? What could be improved? Capture and celebrate all progress. ‘Before and after’ photos of rooms or spaces within hospitals that are in need or refurbishment or improvement have a huge impact
- The process must be fully supported by a senior executive and clinical lead. There is no point in doing it unless recommendations will be genuinely considered and there is a will to improve
The objective eye has the most valued perspective
- All department staff who are involved need to understand that Walking the Walk is not a CQC inspection but a supportive improvement review, offering the opportunity to share what staff do well and what they want to see improved
- The Walking the Walk team must be independent and objective. ‘Staff will notice a certain amount within their own departments but without exception it is the objective eye that has the most valued perspective, coupled with the experience of a healthcare team who have undertaken many hospital reviews,’ says Ms Henry
- The clinical end of life care lead should accompany the Walking the Walk team through key clinical areas. ‘This has proved invaluable, enabling services to be seen from a different perspective – the clinical lead may not have visited the mortuary or been aware of the issues challenging the bereavement team,’ says Ms Henry
Staff in each department must be heard
- It is crucial that the voice of the staff in each department is heard and considered as part of the Walking the Walk feedback
- Staff participating on the day together with hospital executives and end of life care leads must engage in the real-time feedback shared by the Walking the Walk team at the end of the day
- An end of life care working group should be established to consider the report findings, with a mandate to develop and deliver an agreed action plan
A new perspective on how patients and relatives see services
Feedback from hospital staff has been excellent. One participant said: ‘The walk-through gave us a new perspective that we could never see as staff and helped us understand how things seemed for people using our services. The outputs gave us tangible changes to implement and also suggestions that provided us with the opportunity for rich discussions about subjects we may never have discussed.’
A palliative care nurse consultant found the ‘same-day, high-level feedback’ to the hospital was ‘very valuable and enabled important cross-team discussion’.
Carers are impressed by how receptive staff are to the comments and suggestions for improvement, says Ms Henry. ‘They want to get it right at the end of life, and Walking the Walk helps them see how to do that.’
The results have been so impressive that NHS England and NHS Improvement have commissioned the team to adapt and develop the Walking the Walk approach for other settings and situations that carers find themselves in, taking the approach beyond hospital-based end of life care.
‘I am entrusting my loved one into your keep’
A mother describes how the poor care given to her dying daughter made her resolve to help bring about improvements:
My daughter Louise died from breast cancer when she was just 28. She died in a busy A&E on a Friday night. Her end of life care was just abysmal, to say the least. I decided then I would devote the rest of my life to improving end of life care locally and nationally.
I became involved in Macmillan Cancer Support, giving the family perspective on a range of issues. Macmillan offered to train me, but I refused. If they ‘trained’ me I would be less able to see things through the eyes of the families experiencing the death of their loved one in hospital.
Step by step with the carer
I campaign vigorously for carers’ rights. Yes, the patient needs attention, but their carers do too.
Nurse consultant Claire Henry knew I was passionate about end of life care and invited me to take part in Walking the Walk – a carer and Claire walk through the journey that a carer would experience if their loved one was rushed to hospital and they died. We walk through the car park to the mortuary, visiting A&E and various wards that deliver end of life care.
We have seen some of the most bizarre artwork – one hospital had some very arty photos of rusty surgical instruments. The imagery could stay with a person who has just watched their loved one die for years to come.
When you are in that situation with your loved one you think, ‘I am entrusting my loved one into your keep and believe you will do that with compassion and love and treat this person I love with empathy,’ so when you see things that don’t gel with those thoughts you start to panic.
Care does not stop when the person stops breathing
When Louise was in the mortuary I was worried she would be all alone at night, and when I saw it myself, I would not have wanted to be there.
The mortuary can be overlooked completely – we speak about it during our feedback and nurses sometimes clearly see it as an alien place to their department, but it is part of the journey. I would like to see nurses go down to the mortuary. Not only is there some wonderful work going on down there, but nurses could ensure families are not walking into the unknown.
In some places nurses do not know where the mortuary is, and relatives can get lost trying to find it. Fresh eyes have shown us that signposting is important.
It also helps if nurses can tell the bereaved person what the mortuary is like and what happens there, and reassure families that someone will be there if they need help. It is a long walk to see your loved one – and even longer and more distressing when you have no idea what waits for you when you get there.
Care does not stop when the person stops breathing. It is important that everything is done to make the family feel their loved one is in the safest hands. It doesn’t have to cost money.
Help carers know what is available to them
Nurses can help the bereaved carer know what is available to them – that they can help wash the body and have mementos. This did not happen for me. I was my daughter’s carer throughout her cancer treatment but the moment she entered hospital I felt like she was snatched from me. I wished I could have washed her. I regret it every day.
On the whole, the nursing care that we see is second to none. I have seen such amazing nursing care. Nurses show they care and are there for people, even if they are overstretched. The problems are mainly with environments.
Some rooms that are used to tell families their loved one is going to die are beyond belief – some no more than storage cupboards with a couple of chairs squeezed in, while elsewhere on the unit there is wasted space.
When you are being told someone you love is about to die, breathing becomes difficult, your heart rate goes ten to the dozen, you feel nauseous and like you might faint. You do not need to be in a cupboard. Neither does the nurse.
End of life care delivered by all staff
All these small things can make a big difference to both staff and families.
In our reports we talk about the end of life care delivered by everyone, including the people who deliver the dinners. Having someone make you a cup of tea, find you a sandwich or tell you where you can wash can be huge. I stayed with my daughter for a week once and had to try to wash in a toilet as no one told me there was somewhere I could wash. That does not help you cope.
This work is so important and makes a real difference. Nurses and medical staff in the units we look at have been so receptive to our views and acted on our report. They want to give the best care that they can.
Elaine Cole is special projects editor, Nursing Standard
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