In a society where death is still a taboo, it has become apparent that talking about end of life care may not be an easy conversation, especially for family members and medical doctors who are focussed on helping those they care for to live well. Sometimes, to honour a person’s wishes may mean letting go of certain medical outcomes or a need to protect that person, in favour of allowing that person to live meaningfully, autonomously and with freedom.  With so much focus in the healthcare system on how we can deliver true person-centred care, we have a duty to continue that throughout the whole of a person’s life, whichever course that takes.

As a GP, I have been very interested in how we listen in to the true needs and wishes of older people, especially in relation to frailty.  Over the last 8 months, I have been conducting a primary care contingency plan implementation, which in everyday language means planning care for those who are in their later years or are frail, to support their day to day life goals, inform how to respond in an emergency and meets their personal needs and wishes towards the end of their lives.  The project has taken on an investigative energy, delving deeper in to my observation that currently in the Brighton and Hove area, people are often being set on an acute medical journey which is counter to these expressed needs and wishes.

Here’s what I’ve discovered

We cannot expect GPs and clinicians to adopt a new approach without giving them the time and skills they need to have these sensitive conversations with people who are in later life or living with frailty.

A collaborative approach to care where all care providers work cohesively towards the same unified patient goals would be more effective and efficient in delivering what’s truly needed – aiding a community response to people in crisis.

Designing and implementing a way of ethically measuring how well we’re doing will allow us to see the impact this makes on people and the healthcare system.

And finally, it is only possible to provide an elder or frail person with a care plan founded on their true needs and wishes, when those are understood and incorporated into their plan by a team who has regular input or oversight of their care: Person-centred care planning.

It’s my view that with all of these considerations at the forefront, the health and social care community can more effectively provide the right care at the right time.  This also helps us to avoid giving care that, counter to medical protocol, is not actually wanted by the person.

De-medicalising the conversation

We need to start by de-medicalising the conversation.  I’ve seen many cases of people who are frail, but otherwise well, getting lost in a care system.  This is because without a specific disease or condition to treat, it can be unclear from a medical point of view how to best help that person live their life.  For those with categorical diagnoses there can be a clearer beginning to the pathway.  However, like many, I see medicine as a way of supporting people to live their lives in the way they wish, to the fullest extent they are able to, at any given stage of their life.  This is a reason I believe de-medicalising the conversation is important: focussing on patients’ goals.

What do people really want and need from their care?

For many frail or elder people this simply means being able to go about everyday life in the way that they want – to see their family; to be in familiar surroundings and be with their pets; have good meals; be able to watch the television shows they want; and to retain as much independence as possible.  This means that as well as ensuring those who are frail understand their care choices and the implications they may have on their life, it is important for the patient’s voice to be heard so that the care they receive supports what matters to them – not disrupting their lives further but bringing ease to their journey.

Starting the conversation early, asking the sensitive questions

I believe that another important way we can listen in to people’s needs is to have the conversation about the end of life care well before they reach that point.

Some important questions we could ask are:

What matters to you most day to day?

What do you feel would matter most if you became unwell? Where would you like to be looked after – at home or in hospital?

Have you considered how you would manage at home if you weren’t able to care for yourself?  Would you ever consider living elsewhere?

Have you discussed resuscitation with anyone before?  Would you like to tell me how you feel about it?

Of course, these are not easy topics of conversation and it is equally as important to make sure decisions are made based on the reality of the implications in all possible scenarios.  What is apparent, though, is that not taking the opportunity to find out the answers can leave all of those involved – medical professionals, friends and family – in an entirely more difficult scenario.  People are finding themselves burdened by medical interventions and confusion over their care, neither of which are helping them live the life that they wish as it draws to a close.

By taking the time to listen to the whole person, at a time that they are most able and free to decide and articulate their true wishes we may just make life, ageing and death, easier for everyone.

This blog post is based on a conversation between Dr Esme Gates in the Proactive Care team and Jenny Catling in the Circus storytelling team, who edited the final article in close collaboration with Esme, drawing on reflections from her local contingency plan implementation.  Since it was first published, the term ‘elderly’ has been replaced with the term elder, older, or those who are in later life.

Compassion in Dying are running a campaign called Make it Your Decision.  Here you can find some more useful resources to encourage the conversations we need to be having.

A great source for further advice and resources is the Dying Matters website and specifically the latest edition of Planning For Your Future Care, published by NCPC and freely available to download.

tagged in later life, person-centred care, Primary Care Collaboration

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