Planning for Care at the End of Life

We asked FAY MORLEY from Paul Sartori to tell us something about planning for the end of life. She very kindly came up with the following. Thank you, Fay...

The request to write this article about Advance and Future Care Planning (AFCP) comes at a particularly poignant time. There can often be misunderstanding about what it is and what it isn’t.  Unfortunately, during the pandemic, we have seen new reports about things such as inappropriate use of Do Not Resuscitate forms being issued (https://www.bbc.co.uk/news/health-55163009). This has rightly made people question decisions made on a loved one’s behalf and emphasises the importance of discussing wishes and treatment choices.

Hopefully this article will aim to give a brief explanation of AFCP and the service provided within Pembrokeshire for those wishing to think about this for themselves or their family. 

Advance Care Planning (ACP) was defined in a white paper by the European Association for Palliative Care to include only individuals with mental capacity. In Wales the term Advance and Future Care Planning was adopted, as this recognises the need to also support decisions for individuals lacking mental capacity, who need a care planning approach.

AFCP is a process that supports adults at any age, or stage of health. It is usually used in the context of an anticipated deterioration in health but does not have to be. The process enables the sharing and understanding of personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to ensure that those who are no longer able to make decisions receive the medical care consistent with those values. This may be of particular importance in sudden critical medical events.  

Image by Gerd Altmann from Pixabay

It centres on having conversations between a person, their family and a maybe a clinician, and recording the summary of those conversations as documented evidence.

This may be as a statement of wishes and care preferences (SWACP) or an Advanced Decision to Refuse Treatment (ADRT).

Advance care planning can include anything that is important to you in relation to your future care, from very serious decisions to more day-to-day things. For example: where you would like to be cared for, at home, in a hospice or in a hospital. The types of treatment you would or would not like to receive. For example: whether you would want to be put on a ventilator if you are no longer able to breathe on your own; any religious or spiritual beliefs that you would like to be respected; whether you would like to appoint someone to make decisions on your behalf if you are no longer able to, and the names of any people you would like the doctors to involve in discussions about your care and treatment.

As part of this, you should think about whether you have any wishes that are different depending on whether they relate to Covid-19 or not. For example: you might not want to go to hospital or be put on a ventilator if you are sick with Covid-19, but would still go to hospital and receive treatment for any other illnesses you might have or if you had an accident.

Do not resuscitate decisions are clinical decisions made by the doctor. However they can be part of AFCP and your preferences can be recorded.  

AFCP is supported in law by the Mental Capacity Act 2005. This provides the legal framework to empower and protect people who, on a permanent or temporary basis, cannot make specific decisions for themselves. It also describes the process that doctors and other healthcare staff, family and professional carers should follow when they must make decisions or act on another person’s behalf.

For someone who lacks capacity, a doctor will make decisions about treatment in that person’s best interest. There are exceptions to this:

  • if you have made an Advance Decision to Refuse Treatment
  • if you have made a Lasting Power of Attorney, or LPA, (health and care )

A family member does not have the legal right to insist or refuse a treatment unless they have an LPA in health and have been given the authority within it. 

The Paul Sartori AFCP project has been running in Pembrokeshire since July 2015 and was initially funded for three years by the North Cluster GPs and then, a short time later, South Cluster GPs. Since 2019 we have continued to be funded by the GP clusters and also Hywel Dda University Health Board

There is no cost to the individual wishing to undertake AFCP with the Paul Sartori service. We accept referrals from anyone including self-referral, family or friend, GP, specialist nurses, hospital consultants, district nurses; although the individual has to be registered with a GP in Pembrokeshire and they have to have consented to the referral. A referral can be made for someone lacking capacity; the team will discuss with the referrer and decide how to proceed.   

The team currently consists of three registered nurses working part-time. We can support you to have the conversations with family/ healthcare professionals, help you complete the documentation, advise on whom to share your decisions with and how. We do not provide a legal service but can provide information on LPA and the legal framework of any advance and future care plan.

If you want to know any more about AFCP or are interested in writing your own, please get in touch.

Visit us at: https://paulsartori.org/acp/

Telephone 01437 763223 or email acp@paulsartori.org

Kitty Parsons

Kitty knows that she will always be an incomer, but this is to be her sixth summers. The wet and grey days of winters have not diminished her love of Pembrokeshire, but she is always grateful for the golden light of spring and summer. Her love of the sea sustains her even through the darkest of days and she can often be found at high tide bobbing about in Fishguard harbour at high tide, often with seals in attendance. When not freezing in water she is usually at her computer. She says" Pembrokeshire.online has been an opportunity to celebrate this beautiful county and its people. Keep the stories coming. We love to hear from you."

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