End of life care and bereavement
When cancer treatment doesn’t work, it’s natural that young people and their families will have a lot of questions about the future. Talking about dying and end of life care can be very hard. We spoke to one of our nurses, Marion, about how she supports people through the toughest times.
What’s your role and how do you work with young people with cancer?
“I’m a Teenage and Young Adult Senior Nurse Specialist covering Tayside in Scotland. I support young people aged between 16-25 who have a diagnosis of cancer. This can be at any stage of their cancer journey. It will hopefully be at the point of their diagnosis, but this is not always possible for many reasons.
“How and when I support the young person and their family really depends on them. I can offer advice and support about the cancer and their treatment. And I can offer psychological and social support, and be there as a “go to person” when they need to talk through their feelings or worries, or where they might seek support in their communities for particular needs they or their families may have. This support is there right through until the end of treatment, returning to work or education.
“Sadly, some young people don’t get the opportunity to go back to their old life. Some will be unable to be cured of their cancer and will require palliative care and sadly die.
“This transition is of course so difficult for a young person and their family and friends. That’s why it’s so important that I work really closely with them all to build a professional relationship that will encourage and enable them to feel listened to and supported in whatever ways they need.”
What are some common things people need support with when it comes to end of life care?
“For young people who have been given a terminal diagnosis, I think the support they need will be different for each person who is faced with this terrible situation. Some find it hard to acknowledge their end of life situation, understandably. Others want to take control and be involved with planning for this time, while being enabled to make the most of what time they have with family and friends.”
Understanding palliative care
“A young person may have already met the palliative care team if they have had pain or symptom control needs, but it may be that they will meet this new team of doctors, nurses and other health care professionals for the first time.
“Ensuring they understand the role this team will play in their care, and how I and their oncology team will continue to support them, is a very important role for me at this time. Not everyone understands what palliative care is and why it is important to have them so involved.”
Opening up and talking
“Throughout, it’s important that I encourage the young person and the family to talk about how they’re feeling. Of course, it is very hard talking about death and dying, but opening up about what they may fear, and also their wishes and what’s important, can be helpful for them and their family. It’s also important to know what they may still wish to accomplish and if this may be possible.
“But equally, not all young people will want to talk about this with their family. They might want to protect them from how hard it is. Families might want to talk before the young person is ready, so part of my job is also helping people who are at different stages. Ultimately, it’s important to remember that the young person is in control of the process.”
Getting care in the right place
“Where a young person wishes to be cared for as they approach the end of their life is also very important. Some young people might choose to remain in the oncology areas of the hospital with the team they know well. Moving to a palliative care unit to be cared for may mean having to form new bonds at an already uncertain and distressing time. Home is of course an important option.
“They all require planning ahead to support the young person and the family, which is why it’s important that in my role, I talk to the young person and their family about where they’d like to be, and how we can support them to achieve their wishes where at all possible.”
Peer support and the impact on other young people
“It’s also part of my role to try and get young people to meet others their age who have been through similar things. I do that through social support groups, and sometimes they connect with others online.
“Peer support groups are an important way of linking young people living with cancer. However, it’s important to remember that a young person who has been given the news that their cancer is now not responding to treatment, may share this with their close network in the peer support group. It’s important in my role that I don’t forget that this group may need support too.
“Those in the group who continue to be responding well or are in remission may feel many emotions when one of their peers is deteriorating or sadly dies. They will be grieving but may also experience feelings of guilt that they have survived, and the other person hasn’t. So it’s important to consider the impact on the young people in the peer support group.”
How do you work to support young people’s families and friends when they’re facing bereavement?
“When a young person sadly does pass away, we want to be in touch with the family as soon as is reasonably possible, offering condolences and any support and guidance they may need at that time.”
Being a listening ear
“Often the most important thing when supporting parents and families at this time is just to listen to their story, their experience of how their loved one died and if they were able to be with them. Even if things have been quite distressing at the end, it can help to be able to talk about this and have someone just to listen and acknowledge their experiences.”
Signposting to support
“Bereavement is a very individual experience. Different for every parent, every family member and every friend or colleague. It’s important that everyone is aware that this is what to expect. Supporting each other as a family or in peer groups can be the best support and help available, but that may not always be possible or right for everyone. So it’s useful to share local support and resources available to them so they can seek information or support that is available in their local area.”
Helping to make ‘memory boxes’
“Encouraging and supporting young people and their families to make memory boxes can be really useful. It’s a way for families to relive happy times and help keep these memories strong in their mind.
“The memory boxes can be filled by the young person or by their family, and can support discussion about these special times. It might be a picture of a great holiday, or a birthday card, or a favourite piece of jewellery. These items can all be placed in a box with messages or poems. The boxes can be decorated by the young person, or by the family after their loss in ways that remind them of their loved one.”
Everyone reacts differently – and that’s OK
“People react to death and grief so differently, and that’s totally normal. Many people tell me that they’re worried about how they’re feeling. These feelings may be of anger, emptiness, sadness, numbness, and even guilt if there is one second in the day that they have not thought of their loved one. Or perhaps they have laughed at a fond and happy memory and this results in them feeling so guilty about being able to laugh.
“But these are all normal feelings that may be experienced when you are grieving. My role at this time is to help them to understand how normal these feelings are when you have lost a child, sibling or friend, and how individual this loss is for them.
“If there’s something particular, maybe something about their care or end of life that was unexpected or they want to talk to the team more about it, I can help arrange this. It can be difficult for them to ask for this, but it can be very helpful and enable better understanding or relief of any concerns.”
Where can people experiencing bereavement get more support?
- “Asking people where they’d normally get their support when they are facing difficult times is often a very good first step. This will most likely be their partner, family or friends.
- “If they’re a member of a church, a group, or organisation, they may get good support there already. It doesn’t always have to be a specific bereavement support service that helps them.
- “Work can be a good support for people too, with colleagues who know them well and with services available through their employer.
- “It’s good to remember that sometimes introducing someone new and unknown isn’t the right option, even if they’re highly skilled and trained to provide bereavement support. It’s about doing what’s right for that person.
- “It can be tempting to offer something tangible, but often what someone wants is a chat over a cup of tea and to know someone is there. That’s part of my role.
- “In my experience, hospital chaplaincy can be a forgotten but very helpful resource in supporting parents and families facing or experiencing the loss of a loved one.
- “Family GPs can also offer the family bereavement support. Many GPs have listening and bereavement services which are available – people can check with their local services to see what’s available.
- “And charities like Cruse, Child Bereavement UK and other talking services like Samaritans can be really helpful for many people.
- “Being able to meet someone else who’s been through it can be a really big help for families. Nobody’s experience is ever going to be the same, because the young person they’ve lost is different. But they may have an understanding of some of the challenges.
- “The young person’s online accounts, such as their Facebook or Instagram pages, can bring real support from comments and tributes. It can also feel like another logistical thing that families have to manage though, so I make sure I’m there to talk through the options with them.
- “And finally, knowing they can talk about the person they’ve lost is important too. I make sure I don’t shy away from mentioning them, which can be common thing people do when someone has lost a loved one. Giving them space to talk about them can be a simple yet vital part of the process.”
A big thank you to Marion for sharing her insights and advice.