Why talking about end-of-life wishes is a positive thing to do

Discussing the final months, weeks and eventually moments of your life is a topic many prefer to avoid, but a Swansea Bay team is encouraging people to have that conversation now - before it is too late.

For patients who have a chronic condition that is life-limiting, the importance of talking to loved ones and healthcare professionals about what they want for their final days and when they die can’t be underestimated.

Having frank and honest conversations in the months and weeks leading up to the end of their life offers people a safe opportunity to share their requests for the last stage of their life. That could focus on the treatment options that might be best for that individual, or it may be centred around religious, spiritual or social needs.

It can lead to an improvement in the end of life care provided and reduce the burden on families or close friends. It often relieves anxiety - as relatives won't have to make decisions on behalf of their loved one, worrying about what to do for the best. It can also avoid unwanted or futile invasive treatments, offering people a more peaceful way to die.

Talking about this early allows people to have the four conversations that are universally important to people who are dying – thank you; forgive me; I forgive you; I love you.

Each person’s needs may differ, but the focus is the same – what matters to them.

PICTURED: End of Life Parasol Clinical Nurse Specialists Philippa Bolton (left) and Glenda Morris have trained staff to become End of Life Champions, which helps them recognise when a patient is dying, understand more about end of life care, and being comfortable about having difficult conversations with patients.

This year, the health board’s End of Life Care team is focussing on ‘Advance and Future Care Planning’.

This involves recognising patients who are coming to the end of their life at the earliest possible stage, and generating conversations earlier so their wishes are discussed, recorded and respected.

The sooner this is highlighted the more time it gives the patient, family members and healthcare professionals the opportunity to put things in place.

It is important that people who are closest to the patient also have these conversations early on to help provide a less complicated bereavement period.

Sue Morgan, Consultant in Palliative Medicine, said: “What we are seeing in this health board is that because we are not having conversations about death early enough, patients often do not know what to expect. They may not understand when they are moving from one stage of their condition to the next.

“Recognising when people are changing from one stage to another ensures that people get the care and support they need – like applications for various benefits and grants to support them.

“As healthcare professionals, it’s understandable we are very much about making people better and not focusing on a time when that may no longer be possible.

“But having those conversations earlier with patients mean they have a better understanding of their condition and they can be more actively engaged in decision-making in what is important for them. It is also about making people aware of the choices that can be made.

“In Swansea Bay, around 53 per cent of deaths are in hospitals with patients often attached to drips and other contraptions which have little chance of adding anything, and could be making their last hours very uncomfortable.

PICTURED: Sue Morgan, Consultant in Palliative Medicine.

“In other words, are these interventions actually prolonging life, or in reality just prolonging death?

“If people knew that was the case in advance, they may opt not to go into hospital and instead have their care at home in a familiar environment with family and friends around them.

“Deaths in hospitals in England are around 44 per cent, which is nine per cent less than in Swansea Bay. This illustrates the opportunity for the difference which can be made for so many people who are dying, by having the right conversations earlier.”

So when is the right time to talk to patients, and who should talk to them?

The stages of a patient with a progressive chronic condition is split into four parts:

1)       After diagnosis, when the condition is often responsive to treatments.

2)       When  medications require some fine tuning or additional medications.

3)       Condition is not responding to treatment - this often leads to more hospital admissions.

4)       Last days of life.

It is after the first stage when any healthcare professional – ranging from a GP, care home staff and consultant to occupational therapist or nurse – should talk to the patient.

Dr Sowndarya Shivaraj, primary care general practitioner lead for end of life care in Swansea Bay, has been involved in promoting Future and Advance Care Planning uptake across the health board for the last six years, mainly in the community and primary care.

She has delivered training sessions and webinars for GPs, GP trainees, care home staff and district nurses.

She said: "Having these discussions early plays a vital role in end of life care management.

"It is important that primary care clinicians and health care professionals identify these individuals at an early stage and initiate discussions at the earliest opportunity rather than leaving that discussion for the last few days of life, where a patient might not be well enough to express their wishes or preferences."

To ensure a wide range of its workforce is equipped for these decisions, the health board has developed End of Life Care Champions.

Staff are trained to recognise when a patient is dying, understand more about end of life care and be comfortable having difficult conversations with patients.

PICTURED: Dr Sowndarya Shivaraj.

Sue added: “As clinicians, we need to start these conversations. It’s not a conversation to have all in one go, it’s about planting the seeds and letting things permeate so that everyone is ready for the next step of the conversation.

“At the time of diagnosis is probably too soon for the whole conversation as patients need to come to terms with having a particular disease or condition.

“But once that person has understood their condition, we can have a discussion about what the future may look like.

“The focus is very much on getting on the right care at the right place at the right time according to the patient’s needs.

“It’s not about denying anyone the right care – the hospital may be the best place for their care, but we want that person to have the right rationale before decisions are made.

“This is going to be a bit of a culture change for healthcare professionals and for the public because it is moving from the idea that everyone can have treatment to keep them alive for a long, long time.

“Where there is little chance of the person getting better, we want to put life into days, not vice versa. That may mean stopping treatments that the patient is no longer responding to and focusing on what is important to the person through the conversations they have had.

“It’s not about doom and gloom - it’s about supporting conversations about what matters to people, and understanding what information they need to help make decisions.

“What are the things that are absolutely what they want and need? It could be that spending time with their family for as long as possible is the important thing. Or it’s about not being in hospital, being able to walk the dog on the beach, going on holiday or making church every week. It varies a lot.

“That adds value to someone’s life. Everyone should have the opportunity to die with dignity.”