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Walking the walk
A carer’s perspective of end of life care

When we think of end of life care, it is right to assume the focus falls on the person who is dying. Their comfort, their needs and their wishes. For carers, however, holding a loved one’s hand every step of the way can have a huge impact on their health and wellbeing. So how can care settings ensure that carers are looked after when a loved one dies? Claire Henry MBE, Marie Cooper and Roberta Lovick share their thoughts.

End of life care touches us all, both at work and in our own personal lives. We often find it difficult to talk about, which can lead us to not always thinking about the impact it has on the people we care for, their families and staff. When it comes to care after death, we are even less likely to discuss this but getting it right is vital.

Why this is important

With over 70% of deaths occurring in a hospital, care home, hospice or supported living, it is clear that dying is a regular occurrence in these settings. Have you ever thought about what it is like for carers to come in and visit their loved one in the last days of their loved one’s life? Or to come and pay their respects after they have died?

For some carers, it may be the first time they have experienced a death and it may be the first time they have to find out about what to do when a loved one dies with the need to follow a procedure that they know nothing about. This can be stressful.

Carers’ needs can be easily but unintentionally overlooked. In order to understand whether you are thinking about the whole family when it comes to end of life care, try asking yourself the following questions:

  • How was the experience of carers who attended your organisation this week?
  • How confident are you that their experience was the best it could be during a vulnerable time?
  • Are your processes of care working well?
  • Do staff in your organisation know what to do when someone dies, how to support their loved ones and what information to give to the families?
  • Are there areas which could be improved?

The answers to these questions will have a lasting impression on the bereaved carer, which is why care after death needs to be seen as an essential component of high-quality care.

Walking the walk

Walking the Walk is a quality improvement initiative to better the experiences of carers whose loved one is dying or has died in a care setting. Using an experience-based approach adapted from two programmes; The Fifteen Steps Challenge: Quality from a Patient’s Perspective (NHS England) and Promoting Healing Environments (The Kings Fund), the Walking the Walk team visit the care setting and consider the environment and end of life care provision through the eyes of a carer.

Carer involvement in this project has been essential, as these are the very people that will, at some stage, have walked this long and difficult path with their loved one. Hindsight is a valuable thing as it fixes the lens on the less obvious. When you are in a state of loss and grief, everything seems exaggerated. Something that a professional may overlook might be the very thing that has a lasting and profound effect on a carer or the family as a whole. This can make the healing process lengthier and much harder to navigate. For example, when the bereaved have to take a long walk down a dark, cold corridor to the mortuary viewing room in a hospital. Their loved one is wearing a hospital gown rather than their own clothes; their hair has not been combed in the usual way. How the viewing/visiting room smells, tired decor and its lighting can and does make a lasting impression. Get these things right and it shows to families you care about their loved one even after death.

To make effective change, observation is key. A Walking the Walk review is not an inspection, rather it provides supportive and objective feedback for care settings. Critical to that feedback is the voice of the person with experience – the carer. Their contribution adds a veracity which is insightful and often quite surprising.

What does a Walking the Walk review entail?

A Walk the Walk review is undertaken by an independent team outside of the care organisation. The team includes two to three members who have professional end of life expertise, as well as carers who have had personal end of life experiences with their loved ones whilst in a care setting.

The team walk the walk of the carer from the entrance of the organisation right through to the place where a deceased person is laid to rest ready for the family to visit. During the walk through, the team will observe the environment and speak with staff and hear their views on the organisation’s end of life care policies. Could anything be improved to enhance the experience of a grieving carer? Would overnight stays be helpful? Should there be more information available about what will happen after their loved one has died?

A review will also take into account faith and the spiritual needs of the dying person and their family. Do arrangements need to be made to ensure that families are comfortable and need not worry that their loved one’s wishes will be respected once they have died?

At the end of the review, the Walking the Walk team will meet with the setting’s manager and members of the team to offer some immediate feedback which will then be followed up by a written report supported by evidence and photographs, where permission has been granted and privacy respected, to show what was working and what could be put in place to enhance the experience of carers when their loved one is dying and has died.

The benefits

The importance of someone being in a pleasant environment when they are bereaved is not to be underestimated. They may be in shock and they will almost certainly be in distress which means they are likely to experience heightened awareness of their surroundings. Poorly ventilated rooms, stark and unfriendly waiting areas and dreary corridors may add to a carer’s distress and lead them to think that an organisation takes little pride in what they do and indeed little care for their loved ones after death.

Calm, clutter-free spaces and private rooms for difficult conversations could transform a carer’s experience of their loved one’s final days and those following after. These things can take little time to resolve but can have a long-lasting effect on carers’ emotional health and wellbeing.

There are also benefits to staff who will feel engaged and listened to when asked for their direct contribution to their organisation’s improvement action plan. Putting staff training in place so that they can confidently inform families what to expect when their loved one has died will only benefit each staff member and the organisation as a whole.

Vital information

It is important that staff are aware of the information on offer about what to do after the death of a loved one. This means they are able to tell a carer who they need to call, how to register the death, make contact with funeral directors and let them know about the practical services which exist, such as Tell Us Once.

Information about where carers can get bereavement support for themselves and other family members is also essential.

There are national resources available, but many organisations will have local information which may be more useful. To find this out, you can contact your local palliative care team, hospital bereavement officer or coroner’s office.

Care after death should also include remembrance and celebratory acts. Remembrance books can feature contributions from family members, other residents and staff who looked after the person who has died and got to know them well. Some organisations may hold a yearly remembrance service, where families, friends, residents and staff can come together to remember their loved ones. It is often the simple acts which mean the most to carers and family members and ensure they are not forgotten when it comes to end of life care.

Claire Henry MBE is an Independent Consultant in Palliative and End of Life Care. Email: Twitter: @clairehenry_

Marie Cooper RGN BSc MSc is an Independent Nurse Consultant in Palliative and End of Life Care. Twitter: @mariecooper100

Roberta Lovick is an expert with personal experience.

What does your service do to look after all parties during and after a person’s death? Would you consider a Walking the Walk review to see where improvements could be made? Tell us your thoughts and feed back on the ideas here on the CMM website

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