Introduction

Many assumptions are used when we talk about Advance Care Planning, too often assumptions are made about the presence of children or family members available step into a caring role.

In this guest blog by Penny Shepherd, find out why this is becoming an increasing challenge to society and about what help and support is available to people who are ageing without children.

Thank you Penny.

Clare: Hi Penny, thank you for writing this blog, can we start with an introduction to you and a bit about you and AWOC means

Penny: I am the co-ordinator of Ageing Without Children East Kent (AWOC East Kent). We are a local group within the network run by the national charity Ageing Without Children (AWOC UK).

People are “ageing without children” if they never had children or are without their support for reasons such as estrangement, death, distance or the child’s additional needs. We call them “AWOCs”.

Too often, health, social care and other later life services assume a family member or friend will provide advocacy and assistance for an older person. AWOCs may have a spouse, siblings or close friends of our own generation but, as these lose capacity or die, there is usually no equivalent to an adult child to step in. This can lead to inadequate support and worse outcomes than when there is a family advocate.

We share the national vision of a world where people ageing without children can age well. We offer peer support and information, and work with other local organisations to ensure that the needs of AWOCs are included in policy, planning and services for older people.

www.awoc.org.uk

Clare: Why is the work of AWOK becoming increasingly important?

Penny: The number of AWOCs will grow significantly over the next twenty years:

Women currently in their late seventies (born in 1946) have about a one in ten chance of never having given birth. This will more than double over the next twenty years. For women now in their late fifties (born in 1966), the proportion is one in five.
Older men who divorced decades ago and no longer have a close relationship with their children are a relatively recent phenomenon.
Older lesbians and gay men are less likely to have children than their younger peers.
A larger proportion of adult children seem to live overseas than previously.
The number of older people is growing meaning AWOCs are becoming a larger percentage of a bigger population.

Meanwhile, families are smaller than in the past. There are less likely to be nephews, nieces or close relationships with a wider extended family. We regularly meet people who have no living family or only remote cousins they scarcely know. And few today have the close intergenerational friendships that might result in a willingness to advocate or care.

Clare: How did your interest in AWOC begin?

Penny: I became a carer for my mother for the last ten years of her life as she lived with dementia. Like many AWOCs, I saw how health and social care assumes there is a family advocate, and my impact on my mother’s quality of life. I realised there was no-one to play that role for me.

As a 1970s feminist, I have seen that social change can happen. I concluded “health and social care systems are not fit for my old age – so I’d better play a role in helping to change them”.

Clare: Thinking specifically about Advance Care Planning, what are some of the challenges you have identified for AWOCs?

Penny: Too often, advance care planning materials start “discuss your wishes with your loved ones” or “first find someone you trust”. But typically we don’t have someone we trust, particularly someone younger than us.

Challenges include:

Advance care guidance rarely includes information on effective use of professional attorneys or what happens if you lose capacity without LPAs in place and don’t have a family member to become your deputy.

It is unclear whether other advance care planning documents like an Advance Decision to Refuse Treatment (ADRT) or a statement of wishes will be accessible to health and social care professionals when the need arises if there is no family advocate, or that they will be respected if found.

Some of the language used in advance care planning – “loved ones”, “next of kin” or even the assumption that there will be “family and/or close friends” – can be alienating and distressing for those of us without these relationships. This may activate old hurts, particularly if we are childless not by choice or are estranged.

Some advance care planning forms assume we can identify a single contact for health and care professionals for everything from welcoming us home from hospital to arranging our funeral. Often, we can’t – our executor and the neighbour who holds our keys may not be aware of each other.
It is not clear that suitable or sufficient support will be available to meet our care planning needs. There may not be sufficient professional attorneys and deputies. Solicitors can seem an expensive option for those who are not wealthy and have relatively simple needs, but there are few alternative providers.

There are clear opportunities for innovation in the provision of advance care planning for AWOCs, eg. using artificial intelligence or starting new community businesses, but the scale of these opportunities is difficult to quantify due to the very crude and limited data available about AWOC numbers and where they live.

Clare: I know you are involved in many strands of work to address some of these challenges, what are these?

Penny: We want to understand better how the current system works for those without “someone they trust”, raise awareness about our challenges and explore, encourage and co-create new ways forward.

We hope to publicise what we discover through a mix of blogs (like this one), webinars and – eventually – the “missing manual” on advance care planning for AWOCs to supplement what is available from others.

We also see a range of future opportunities and concerns where AWOCs need to be part of the debate:

Data: Improved national statistics and better NHS and social care data on the numbers of AWOCs, where they live and their other socio-demographic characteristics so society and service providers can plan better.
Artificial intelligence: Its use in capturing wishes and preferences and in social care delivery, and the associated ethical challenges.
Alternative attorney/deputy/advocacy providers: eg. Charities, co-operatives, community businesses and others alongside solicitors, local authorities and family/friends.
Financial and other services: Including potentially greater demand for care annuities and other later life support.

Clare: What advice, support and resource is available for AWOCs?

Penny: AWOCs should not dismiss the advance care planning information already available, even when it is not fully suitable for their needs.

We are seeking to fill some of the gaps but we are a small organisation and do not provide 1:1 support. We need others to get involved to help AWOCs plan confidently and know they can age well.

Clare: How can people find out more about your work?

Penny: Our national website is at www.awoc.org.uk. Blogs about advance care planning should be published there soon.

AWOC UK hopes to organise webinars to educate AWOCs and promote debate on the current limitations and challenges.

The AWOC UK Facebook private group (for AWOCs only) has a range of posts discussing the issues we experience.

AWOC East Kent can be contacted at awoceastkent@gmail.com and produces a free monthly email newsletter available to all, including stakeholders.

Clare: What key message would you like to share?

Penny: People who are ageing without children or other “next generation” family support are a significant and increasing proportion of those considering advance care planning.

Advance care planning materials need to become more suitable for us.

The choices available for those without family support in later life also need innovation and improvement.

Meanwhile, in spite of these limitations, it is important that AWOCs do use the materials and support currently available for planning. Indeed, it can be argued that we need advance care plans more than most.

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