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Advance Care Planning: Why AWOCs need a "Missing Manual"

Updated: Sep 17


Existing support tends to assume that everyone has family or friends


People who are ageing without children or other “next generation” family support are a significant and increasing proportion of the growing number of older people. Penny Shepherd explains why advance care planning materials need to become more suitable for us.

 

Everyone is encouraged to make Lasting Powers of Attorney (LPAs) so that “someone we trust” can manage our affairs if or when we lose mental capacity. We are reminded that otherwise our families or friends will have to go to court for permission to help us manage our money and then be subject to more rigorous oversight, and that it is important to have “tender conversations” with them so they are aware of our future wishes.

 

But what happens if we have no family or close friends – or none able or willing to act for us? Or if we have a “same generation” partner or close friend but no “next generation” support?

 

Too often, existing guidance doesn’t cater for this. That is why people ageing without children need additional information – a “Missing Manual” – to help us prepare for our final years.

 

This is some of what we need to know:


What professionals could you appoint as your attorney, either from a legal firm or the small number of alternative providers?


How professionals acting under lasting power of attorney documents are regulated, including by the Solicitors Regulatory Authority (SRA) and the Charity Commission where relevant?


What questions should you ask a professional when you are considering appointing them as your attorney, eg. about whether they will act on both health and welfare and on property and financial affairs, are they willing to authorise/reject life sustaining treatment, how are their costs set, how do they manage conflicts of interest, what happens if your chosen professional retires or leaves the firm?


What happens if you don’t appoint an attorney? How are decisions made in your “best interests” by health and social care staff? What is the role of the Court of Protection to appoint a professional or local authority deputy to manage your property and finances? How are deputies regulated and how and what will you be charged for their support?


What can you do to record your wishes in advance, eg. using an advance statement of wishes and/or an advance decision to refuse treatment (ADRT)? Who can help you to produce these?


How will your advance statement or advance decision be located when the need arises? How can you find out how or whether health and social care providers in your area access this information and what you can do to increase the chance that it will be found?


What are Independent Mental Capacity Advocates (IMCAs), what do they do and what entitlement do you have to their support when you lack capacity but don’t have family or friends to help you to make your wishes known to those planning your care?


What happens if you die without making a will? What are the advantages and disadvantages of pre-paid funeral plans? Will your local council arrange your funeral if you have no-one else to do that? What are your options for bequeathing your estate, including naming charity recipients or setting up your own charitable trust?


What new developments in health and social care are likely to affect your later life as someone without a family member to advocate for or support you? How is the NHS planning for your needs as it seeks to shift from acute hospitals to community-based services?

How might the use of artificial intelligence and remote monitoring affect your social care, and what ethical safeguards are being considered?

What new options for social care may exist beyond traditional care homes and “four home visits a day” by domiciliary care workers? How can you stay informed about your later life choices as options evolve?

 

There is excellent introductory advance care planning information available that AWOCs should aim to use (see links below) but it is usually not sufficient for our needs. That is why it needs to be supplemented by a “Missing Manual”.


Penny Shepherd is a steering committee member for the AWOC East Kent local group. She is researching for the “missing manual” on additional advance care planning information needed by AWOCs, and on how well the existing system under the Mental Capacity Act 2005 (and its interactions with other legislation, regulation and business practices) serves the needs of those ageing without children or other “next generation” family support.

 

To start advance care planning, she likes:


 

These recommendations are opinions based on Penny’s personal investigations. Other equivalent or better services may be available. Penny is not legally qualified and none of her comments should be taken as personal or professional advice. Please do your own research.

 

 

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