Addressing some key things early on can make a huge difference to people’s ability to direct their support and have their wants and needs met in a way that is right for them. When a case is allocated to you and the person is living with a serious illness, dying or likely to die, things to consider are:
- Recognising that people who are dying with serious illness do not have time to wait. Often they are given prognoses that do not fit into social work service timescales. It is helpful to understand their care needs right now, and how they are likely to change as their health worsens. Needs can change quickly, and more proactive care management may be required.
- Talking about it and planning.The person is living with their illness and prognosis; you can’t upset them by asking and talking about it. The more they and their families can understand about what support is or is not available, the better equipped they will be. If we know what people think, feel, have or want, we’re in a better position to support them and create a care plan and contingency arrangements that work.
- Consider pre-existing or additional needs. Trauma-informed practice recognises that people’s lived experiences can affect how they engage with the healthcare system. Seeking to mitigate triggers, supporting the wider healthcare team with more appropriate approaches and understanding and addressing multi disadvantage is vital.
- Future care planning Having a plan helps in times of crisis. All professionals need to check if Powers of Attorney are in place and that the right people are consulted. The social worker’s role is to help people think through what might be coming up for them at an early stage and support them to develop a plan for care at home and a plan for care in hospital. See National Strategy.
- Income maximisation. Living and dying with a serious illness can be expensive, for example keeping homes warm, powering aids and special equipment, adjusting to loss of income, etc. Anyone in Scotland with palliative care needs is eligible for a Benefits Assessment under Special Rules in Scotland (BASRiS) or SR1 form which entitles people to receive benefits at a higher rate. (Social Security Scotland - When to complete a BASRiS, SR1 or a DS1500 from)
- Carers and supporters. Understanding who supports the person and how they are likely to manage as things develop is essential. Having support for carers at an early stage and regular breaks can make the difference between people being able to die at home if they wish and being admitted to hospital or reaching crisis.
Children: if there are children in the person’s life (their own, grandchildren/chosen family), it’s important that they are included. Adults instinct is often to ‘protect children’ by not telling them what is happening. Research shows that children who are included in what is happening in their family, able to ask questions and understand what is likely to happen are better able to cope with the dying and death of their loved one (Supporting bereaved children and young people | Child Bereavement UK).
Proper consideration of the ongoing care of children after the death of a primary care giver and making provision for the care of children after their death is vital to their feeling safe. Social workers have a key role in supporting and putting plans in place. The local palliative care services will be able to support parents and children to talk appropriately for their age and understanding to make sense of what is happening.
- Does the person have a will? Wills are important for everyone, even if they have no assets or capital to leave. Administrating an estate without a will is more difficult and can be traumatic and expensive for those left behind. A simple will need not cost much and will save angst and expense.
- Funerals and administering the person’s estate. There is a legal framework for establishing responsibility (Laws of succession). People with no known relatives, no will and no one nominated to take care of their affairs may require a local authority funeral. In these cases, the council will claim the person’s estate. It can be necessary to trace blood relatives through the office of ultimus haeres (the ultimate heir) to establish responsibility. For people with known relatives, it is important to know whether the person has wishes or views about their funeral. There is an increasing number of options for the disposal of a body. If the person hasn’t made their wishes known, these can be difficult decisions for grieving families.
- Working with health care teams. Despite closer integration between health and social care, the two often work in silos. With consent, connecting with the person’s district nurse, general practitioner and specialist nurse or consultant, can make a huge difference in effective and streamlined care planning. The social worker can help to support the person with discussions and decision making about their care with their healthcare professional.
- Bereavement support. Supporting people to live as they choose until they die, and supporting those around them makes a significant difference to the people left behind after the person dies. Adjusting to a new life and recovering from grief can be difficult and people often need support. People with additional needs, people with existing poor mental health and people who have experienced multiple or traumatic losses are at higher risk of a complicated bereavement (Trauma – national trauma transformation programme | NHS Education). People in these groups are more likely to require more intensive support and are at heightened risk of harm to themselves. Liaising with their healthcare teams can be helpful.
Challenges and opportunities
- Your time–their time: Supporting a person with palliative care needs is likely to take time and needs proactive care management and ongoing support for the person and their family and carers.
- Lack of agile services to meet rapidly deteriorating or changing needs can be challenging. This often leads to decisions being made in crisis, which can result in peoples’ wants or wishes being over-ridden. Social workers have an important role in advocating and ensuring indiscriminatory ethical practice.
- Support and protection and safeguarding is a live issue. Just because the person is dying may not change pre-existing behaviour. At a time of heightened emotion, otherwise manageable issues can push people beyond their ability to cope.
- People not wanting to engage with these issues is a common challenge. Social workers are often called in to sort things out when healthcare gets stuck. So long as people know that they have a right to make choices, that support is available and that they can change their minds, we have started the conversation and left the door open.
- It can be challenging for social workers and those they have supported when a ‘good ending’ to the intervention or contact isn’t possible. If the person dies over a weekend or during the social worker’s annual leave the family may feel they have been left in limbo. This is magnified, as once the person dies they no longer see the healthcare team and they can feel very alone. Appropriate signposting to bereavement resources can be helpful.
No social work case is easy, and we can all be triggered by the situations we work in, and even more so when it comes to dying and death. It’s important to understand social work in the context of the network of support for people who are dying; you are not responsible for everything and there should always be someone else in the health and social care multidisciplinary team to talk to or seek advice from.
In addition, the following support is available:
- at least one social worker in each local hospice who would welcome the opportunity to talk and support you through whatever you find
- a Scotland-wide group of palliative care social workers that meets regularly to offer mutual support and encouragement, share good practice and create new learning; see the Association for Palliative Care Social Workers (APCSW) website for contact details
- local bereavement networks across Scotland
- a counselling and bereavement support service or details of local counselling and bereavement support you can access for yourself in each palliative care service.
Scottish Palliative Care Guidelines
