Why caring for the health of people who use substances is important
Palliative care aims to give each person the best quality of life possible towards the end of their life and to give them and their family and friends the best possible care experience of dying and death. The World Health Organization (WHO) defines palliative care as ‘the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.
However, the problem for many people who use(d) substances and those caring for them is that their end of life is often only identified in the last few weeks or days of life. This means that, for both health and social care staff and family/friends, care planning and opportunities to talk meaningfully with the person approaching
death may be extremely limited. Such conversations can be all the more difficult for families if relationships have become strained or fractured – which is where practitioners working within substance use services may be able to help.
MANY people who use substances will become ill with the same types of conditions that everyone else does.
A small minority of people who may have been using a lot of substances may have health problems directly related to their use of substances. For example, liver problems related to drinking alcohol heavily, or hepatitis B / C related to sharing equipment for injecting drugs.
Some of these health problems can be serious and can get worse over time. Getting help early can vastly improve health and well-being.
Some people may reach the end of their lives sooner than hoped. You can help by enabling people to have as much control as possible as they approach the end of their lives.
If someone has used substances in the past, they may be reluctant to take strong medication that is prescribed for SAIH. They may fear developing a reliance on it. But painkillers are likely to significantly improve their quality of life.
Why do practitioners need support?
The complex needs of people with PSU needing palliative or end of life care can add stress and strain on frontline practitioners, however, experienced they are. They are not immune to the sadness and loss when someone they are working with dies, nor to the frustration and emotions that accompany working with someone who does not want to change their problematic substance use.
It is important to acknowledge and provide emotional support for staff as well as training opportunities to help them work more confidently with this potentially growing group of people and their families.
- Having a team approach, rather than an individual approach to care. This was very helpful in developing care provision and supported decision-making – particularly MDT. It helped to overcome the fear of getting it wrong – a fear for patients and for their professional status.
- Having regular supervision (internal and/or external) around loss and bereavement for staff.
- Emotionally responsive teams were valued, as were managers who balanced
the administration requirements with the emotional support needs of staff, and
colleagues who supported each other. For substance use professionals, a team-based approach to anticipating death and loss among people was helpful. Talking about death and loss more regularly with colleagues helped it to become a more normal part of their role.
- Understanding what a ‘good death’ would be for each person.
- Existing guidance on managing multiple, long term conditions could be adapted for responding to this group of people (Goodwin et al. 2010).
Practitioner pocket guide
This pocket guide is for social and health care professionals who work with people using substances who have serious and advancing ill health. It is designed to help you provide the best possible care and offers some suggestions about the support you can access for yourself – help you both practically and emotionally.
Videos & Podcasts
These podcasts have been created by social and health care practitioners supporting people who use substances as they approach the end of their lives.
These case studies give some examples of social and health care practitioners providing support to people who use substances and are becoming increasingly unwell.