the Brownlow group of GPs , Marie Curie Hospice staff , With You and Ambitions Liverpool staff , and housing agencies such as the Whitechapel Centre and YMCA . However , across the wider system and away from the hard work of these agencies there is a genuine ignorance about how to support someone who is using substances and approaching the end of their lives .
To develop a new approach , the team asked people about their experiences of living or working within the existing system . Finding out what worked and what didn ’ t was an important first step in developing a different way of working . What we heard were examples of shocking and prejudiced ‘ care ’, with only a few examples of good practice .
The research team worked alongside people with lived experience of substance use , as well as families , friends and carers , and social and health care practitioners to develop the new model of care . Through a series of online workshops , the group agreed the short- , medium- and long-term goals for a new model .
THE LONG-TERM GOAL :
‘ To provide compassionfocussed palliative and end-of-life care for people using substances , and their families and carers , which addresses current health inequalities .’
This doesn ’ t mean the responsibility lies just with palliative and end-of-life services ; it means that no matter where the person is in the ‘ system ’ when they become seriously ill , the people around them should be better equipped to have conversations with them , whether that ’ s a substance use practitioner , family member , hostel worker , or medical staff . It also means family members ( we use the term loosely – it could be a close friend or neighbour ) should be better supported ,
There are five clear steps to advance care planning ( ACP ) Adapted from what ’ s known as the Gold Standards Framework , 2018
1 THINK
2 TALK
3 RECORD
4 DISCUSS
5 SHARE
both in their own right and in terms of the information and emotional support to help them in their caring role .
To reach the long-term goal there are a series of ‘ stepping stones ’ including short- and medium-term goals . For our short-term goals , the working group said everyone needed more knowledge and understanding of the issues people faced , information on how to talk to someone about end-of-life wishes or substance use , and that families , friends and carers – paid and unpaid – needed better support . This meant providing knowledge and resources to professionals , family caregivers and people who are unwell , including examples of good practice of how to raise the subject with someone else and information on end-of-life care and / or substance use . As a result , a range of booklets , practice pointers , leaflets and podcasts were developed and uploaded to the project ’ s website : https :// endoflifecaresubstanceuse . com The resources also offer suggestions on how to challenge a GP or other professional who might not be helpful , such as taking someone else to the appointment or saying , ‘ I think I could be seriously unwell . I know I drink / use drugs , but it ’ s more than that . I need someone to take my concerns seriously .’
Think about the future : what ’ s important to you , what do you want to happen ( or not happen ) if you became unwell ?
Talk with family and friends and ask someone to be your spokesperson or lasting power of attorney ( LPA ) if you could no longer speak for yourself .
Write down your thoughts , including who your spokesperson is , and store this safely .
Discuss your plans with your doctor , nurses or carers . This might include a further discussion about resuscitation or refusing further treatment .
Share this information with others who need to know about you – through your health records or other means , and review it regularly .
Of course , talking or thinking about dying is still taboo , despite the fact that it ’ s an experience we ’ re all guaranteed to share . The resources also include pointers on raising the subject with family and friends , as well as suggestions for professionals and family members about how to start conversations .
Depending on the circumstances of our ill health we may not always be able to get things the way we would want them at the end of our lives but there ’ s a far better chance if we ’ ve given it some thought ahead of time , written it down , and told some other people .
The research team heard that what was important was having someone who listened properly and didn ’ t judge , someone who clearly cared about them and wanted the best for them , and professionals who were direct
Free resources at https :// endoflifecaresubstanceuse . com
about what was going on but kind at the same time . They also wanted care in a holistic way , where professionals considered all of their needs rather than just one . Family caregivers and practitioners wanted to know how to take care of their friend , relative or patient well and where to go if they had questions or needed support .
Perhaps the main message from the group and the wider research is that people deserve a ‘ good death ’ and to die with dignity , with as much control as they want , and with as much choice as possible . Making sure that happens is everyone ’ s responsibility .
Sarah Galvani is part of the SUAB ( substance use and associated behaviours ) research group at Manchester Metropolitan University . Email : s . galvani @ mmu . ac . uk
The website has three main sections : 1 . If you are unwell 2 . Practitioner support 3 . Family caregivers ( family in the broadest sense of the term – may be a close friend for example )
It also has information about the research and links to our project reports , practice guidance and policy standards documents .
WWW . DRINKANDDRUGSNEWS . COM JUNE 2023 • DRINK AND DRUGS NEWS • 21