How Family Group Decision Making can support people during hospice care
The theme for this year’s Hospice Care Week is don’t leave hospice care to chance. Hospice UK is calling for greater access to hospice care, so that people and their families can receive the support they need, when they need it. The theme is also an important reminder that when we work and plan together, we can help ensure that, even in the hardest situations, people feel empowered to make decisions for themselves and are supported in the way they want to be.
This is what we believe in at Daybreak. Through our Family Group Decision Making services, we often work with families as they navigate palliative care, both in and out of hospice settings. Palliative and hospice care can bring many different emotions and uncertainties for family and friends, as well as a wide range of practical and logistical concerns.
We asked our Senior Programme Manager, Charlotte, how Family Group Decision Making can play a role during hospice care.
When a loved one is receiving hospice care, families and friends often find themselves navigating one of the most challenging situations of their lives. Alongside the emotional impact, there are practical responsibilities, difficult decisions, shifting roles, and concerns about the future.
Hospice care affects everyone involved, not just the individual receiving care. This includes parents, grandparents, siblings, wider family members, close friends and colleagues. We also know that it can have a significant impact on children and young people, often representing their first encounter with dying and death. Its also important to acknowledge that people of any age or circumstance can require hospice care and that every situation is different.
A Family Group Decision Making process can provide a safe and supportive space for people to come together, share their feelings and, crucially, create a plan that everyone agrees to. The process places the people involved at the centre of planning, recognising that they know best what support is needed and what strengths already exist within their network. As such, it responds to the individual circumstances of the situation. As a process, it aims to facilitate discussions and decisions, and not prescribe them.
As a core value, Family Group Decision Making is a strengths-based model. This means it helps people explore the strengths and opportunities that already exist within a network and how these can be used to address the situation. By bringing everyone together, families can create practical solutions, strengthen their relationships, honour the wishes of their loved one, and ensure everyone has the support they need, both now and in the future.
In the rest of this article, we will explore the different ways that Family Group Decision Making can support an individual and their wider network to navigate it all. You can also read our illustrative story, that outlines what this process can be like for a family in our Story Hub.
Exploring changing roles and responsibilities
Those close to the person being cared for often jump straight to the practical needs. They want to help but perhaps are not quite sure how, especially if they are unclear about their role within the network. During a Family Group Decision Making process, the following can be explored and clarified:
Who will visit and when?
How can responsibilities be shared fairly?
Who can assist with transport or appointments?
Who will liaise with professionals and communicate updates to the wider family?
Who can help with household tasks such as shopping, meals, or childcare?
By developing a shared understanding, support networks can reduce uncertainty and prevent one or two people from carrying the majority of the burden.
Looking after the primary carers
We know that, in many situations, the demands of caring for a loved one often leave little space or energy for caring for ourselves and balancing competing responsibilities such as childcare, school, work, pets, and more. We often put other people first. During periods of palliative and hospice care, it is especially important to ensure that everyone is looked after.
A shared plan can help identify:
What support caregivers need.
How members of the support network can share responsibilities.
Opportunities for respite and breaks.
Practical assistance that could relieve pressure.
Ways to maintain family routines and stability.
Ensuring everyone is heard and understood
The emotions experienced during these situations are wide-ranging, fast-moving, and often conflicting, from sadness, anxiety, and guilt to fear, uncertainty, and even moments of joy and appreciation. Everyone experiences things differently and will have different worries, thoughts, and hopes.
The Family Group Decision Making process can provide a structured, open, and safe place for everyone to share:
How they are feeling.
What they need from others.
What support they can offer.
What concerns they may have.
Ensuring the wishes of the person who is dying remain at the centre
Where appropriate and possible, the views and wishes of the person receiving hospice care should remain central to any planning.
Important conversations might include:
What is important to them at this stage of their life?
How would they like family members to support one another?
Are there specific wishes they would like respected?
What are their hopes for children or other dependants in the future?
Are there memories, traditions, or messages they would like to leave behind?
A Family Group Decision Making process can help ensure that the person's voice is heard and reflected in the plans. This is a particularly valuable part of the process for everyone involved and is why we recommend bringing people together in this way as early as possible during someone's palliative care journey.
Helping children and young people navigate the situation
Understandably, children and young people can be deeply affected when someone is seriously unwell. It may be their first experience of dying and death, and as such there can be many unknowns for them. Equally, children and young people may respond very differently from what the adults around them might expect. Some may not have the words to explain their feelings and thoughts.
It is important that space is given to their questions, worries, and fears in a safe and age-appropriate way.
The Family Group Decision Making process can explore:
What children understand about the situation.
How information will be shared with them.
Who they can talk to when they are feeling upset.
How routines and stability can be maintained.
What practical and emotional support they may need now and in the future.
It can also enable families to engage with schools and activity providers to ensure that children and young people are supported within their usual environments too.
Planning for after someone has died
Thinking about someone dying, and planning for after their death, can understandably be difficult. However, exploring key topics together ahead of time can provide great comfort for those involved, ensuring people have the support, understanding, and practical arrangements in place when they need them.
Discussions can explore:
How family members will support one another after the person's death.
Ongoing support for children and young people.
Key anniversaries and significant dates.
Practical arrangements and responsibilities.
Maintaining important family relationships and connections.
Having shared plans in place can support people through the initial period of grief and into the future.
In conclusion…
Family Group Decision Making provides a safe and structured way for support networks to come together, share responsibility, support one another, and plan for the future. It enables difficult conversations to take place in a safe environment while recognising the wishes of the person receiving care. Loving someone while they are dying is one of life’s most challenging experiences. Family Group Decision Making can be a powerful reminder that no one needs to face this alone.