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Don’t hide from death and dying

Karen Cooper shares the award-winning, best practice developed to provide the best end of life care for residents.

It is important that when people come into a care home they are able to have a high-quality end of life experience, just as they would if they were to remain in their own home. The quality of how a person dies must be as important as their quality of life when they are living.

For those of us working in the care environment to ensure that we are able to give the end of life care someone would want, we need to be able to talk about death, and not hide from the subject of death and dying. At Mount Ephraim House, we developed a culture of openness as this will enable us to support, respect and remember our residents.

Sadly, in the UK, death still seems to be a taboo subject and we are not very good at discussing the issues surrounding death. This is sad, especially when people are having to come into care at the end of their lives. It is a difficult time for people having to adjust to life in a care setting, without then having to think about how they would like their end of life care to be.

It is essential that we have these conversations as early as possible, so that we are then able to develop care plans that reflect how the person wishes their final days to be. Failure to have this discussion will inevitably lead to a poor end of life experience for the resident, their family, friends and care staff.

Staff training in end of life care is essential. This will help staff deal with any issues they have around death and dying, as well as giving them the tools they need to be confident when dealing with someone at the end of life.

Starting the conversation

At Mount Ephraim House, we know how difficult this is, so we spend time getting to know the resident’s family and friends before we come to conversations about end of life care. We have found it is much easier to have this conversation if people feel supported and comfortable with the person they are discussing it with. A conversation with each new resident may encourage them to talk about any anxieties or thoughts they have regarding death.

The difficulty can arise when having a discussion with someone living with dementia, particularly if their symptoms have progressed and there has been no prior discussion about end of life care. We feel that people living with dementia should be able to have a say in their end of life care. This is why it’s so important to have these conversations earlier, to provide people with choices when they are still able to make decisions. Families should not shy away from these difficult subjects; they should discuss them early when they are still able to talk to their loved ones.

At Mount Ephraim House, death is a part of life within the home. We often have discussions about ideas and aspirations for end of life care. We have found that this approach gets people talking very freely, and allows us to explore different options with the individuals concerned. The care team at the home ensure that they can fulfil any special requests or wishes the resident may have before they die. One resident wished to see Elvis Presley, so the team arranged for an Elvis impersonator to come to the home and make the resident’s wish come true.

Early identification and working with health

Ideally, we should be identifying residents who could be approaching end of life early on, enabling us to plan all the necessary support. This includes any equipment and medication that needs to be in place to support good end of life care.

Having strong relationships with, and trust in, all the healthcare professionals is important, as they provide vital support at the end of the resident’s life. With the support of the healthcare professionals, the staff at the care home are able to ensure that they have all the equipment needed to provide a good end of life experience for everyone.

Homes should have an end of life register that is regularly reviewed with GPs and healthcare professionals. The residents who are approaching the end of their life are registered with a specialist GP and put on the end of life register. This helps to avoid unnecessary admissions to hospital, which can cause an additional stress for the resident, and their family and friends, at the crucial time in the resident’s life. The local GPs are also able to keep in touch with families throughout the end of life process.

Planning

A personal end of life plan is created for each of the residents, which includes life histories to help the staff work with families and the resident, to create a plan that will meet their needs. Having this in place for end of life care will mean that the process can be planned and won’t become a crisis management situation. Putting together a life history is particularly important if a resident has dementia and he or she may not be able to express their own wishes.

The plan is then discussed with those family members and friends that the resident wishes to involve in the end of their life. This ensures that they understand the wishes of their loved one. All documents are signed by all parties involved in putting the plan together. Residents and their families know that these plans can be changed if the need arises.

When the time comes

When the difficult time comes, we make sure that staff have the time to be able to sit with dying residents, making sure that the ambience in the room is right, and that the resident has everything surrounding them that is important to them. Patience and time is crucial for everyone, but especially when you are working with residents who cannot easily communicate. Often residents who have built up friendships will sit with each other during end of life.

When the resident dies, care home staff and other residents attend the funeral and they are allowed to pay their last respects, if they wish. The life of the resident who has passed away is celebrated by a memorial tea. Relatives often hold wakes at the home and come back for tea on the anniversary. The staff at the home recognise how important it is for people not to feel that they will be forgotten quickly. As such, the home has in-memoriam plants, benches, murals and even an art studio in memory of one of the residents.

Relatives and friends often continue to support Mount Ephraim House as volunteers, as they miss coming into the home after their loved one has gone.

Getting it right for residents, their families and friends at end of life is an important aspect of caring. These best practice techniques have been developed by the care team at Mount Ephraim House in Royal Tunbridge Wells, one of Greensleeves Homes Trust’s care homes. It saw them recently receive the 3rd Sector Care Award for End of Life Care.

Karen Cooper is Home Manager at Mount Ephraim House. karen.cooper@greensleeves.org.uk Twitter: @GreensleevesHT

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3rd Sector Care Awards www.3rdsectorcareawards.co.uk

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