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End of life care

Emotions Families Health Optional Organising Palliative Parent / carer Relationships Young person

There are often a lot of questions about this time, and also a lot of decisions to be made. If you’re supporting a child whose cancer is no longer curable, there will be many areas you can’t control. However, you can help make them more comfortable, talk with them about making choices and give them options. You can help them to have the best quality of life possible.

You may feel that you can’t face these decisions or have these conversations. Don’t forget the Redkite support team is here to support you and your family.

For many, one of the first questions is how much longer the young person will live. Often this is very difficult to answer. As every situation is different, your medical team may only be able to give you an approximate answer, but Redkite is here to support you through this conversation too.

Your medical team will also guide you through some of the decisions that may need to be made. These can include:

  • When to stop treatment. This can be a particularly emotional issue, with some people feeling it signals “giving up”. It’s an acknowledgment of the situation, and a caring shift of focus toward quality of life and managing symptoms
  • Who to tell about this next stage in the journey, how much and when you want them to know
  • Deciding how much information to share with the young person’s brothers and sisters
  • How to manage work and other commitments
  • Whether the young person wants to continue doing school work, and who they want to spend time with
  • Whether they want to speak to a religious or spiritual advisor
  • What type of palliative care they may want to have and where they want to have it
  • If they want to write a Will or prepare any letters to be read later
  • Whether they want to be involved in planning their funeral
  • Who they want to be there when they die

Palliative care aims to improve quality of life through things like relieving any symptoms or pain. As palliative care is not aimed at curing cancer, many people assume that by being offered palliative care, death must be near. This is not necessarily true. Palliative care is not time limited – in some situations, it can continue for many years, and may be offered alongside other treatments.

Accepting palliative care is a not a sign of “giving up”, even though many people worry that this is how it will be perceived. Palliative care is about making sure the person facing cancer is as comfortable as they can be and that they can live as fully as possible until the end of their life.

A palliative care team can also help carers by doing things like:

  • Coordinating different support services
  • Organising any special equipment
  • Providing respite care for the family

Given the physical and emotional toll of caring for someone with cancer, respite can be very useful in making sure you have the strength you need.

Depending on the medical situation, there are usually three places to spend time as the young person nears the end of their life – in hospital, at a hospice or at home. People can often move between these locations.

Many people feel comforted by the 24-hour support available at a hospital. Hospices are also designed to provide medical support, while providing a more home-like feel. In Australia, there are three hospices designed specifically for caring for children at the end of their lives: Bear Cottage in Sydney,  Very Special Kids in Melbourne and Hummingbird House in Brisbane. Your social worker will be able to tell you more about these options.

If you choose to be at home, many palliative care teams can come to your house to support you there as well.

These are not easy decisions. Explore any concerns you have with your medical and palliative care teams and decide which option works best for your situation. You might want to ask some of these questions to your team.

  • What support services are available if they die at home?
  • Where will they be most comfortable?
  • Can we move between hospital and home?
  • What respite is available for us if we care for them at home?
  • Is there a hospice available that is appropriate for their age?

While many people talk about feeling safer at the hospital, some young people express a preference to die at home, and this can feel intimidating for parents and other supporters. Depending on where you live, there may be services available to make sure the young person is comfortable at home, providing everything from equipment to support workers.

Some things you might want to think about and discuss with the medical team include:

  • Medications
  • Diet
  • Mobility and access (e.g. location of the bed and bathroom)
  • Nursing and other support
  • Personal care
  • Emotional support
  • Your own self-care

You might also want to talk to the medical team about preparing an advance care plan. This means that no matter where you are, you won’t have to make any rushed decisions.

Depending on the age of the diagnosed person and their circumstances, they may want to write a legal Will. Others may want to write an “emotional Will”, which is not a legal document but rather an opportunity for them to record their personal thoughts and messages for people they care about. For example, they might pass on their favourite book or movie to a sibling or friend as a keepsake, or include a personal note to be read after their death.

It is confronting to ask a child or young person if they want to help plan their own funeral, but many have said that this is a positive and empowering experience. Planning their funeral can give them an opportunity to reflect on their lives and choose how they want to be remembered. They might have a special place they want their ashes scattered or a favourite song they want played. Spending time talking with them about their life can create more special memories for both of you.

While there is no absolutely standard way of knowing death is about to happen, there are some common changes that you may notice which happen over the last few days or hours. These can include:

  • Restlessness
  • Change of temperature
  • Increased sleepiness
  • Lack of appetite or thirst
  • Increased secretions
  • Changes in breathing patterns

Palliative Care Australia has more information about the process of dying here.

As hard as it may sound, talking openly and honestly about death in a way that matches the age of the diagnosed young person is likely to be one of the most important things you can do for them.

Allowing them to be involved in decisions about how they want to spend the rest of their time, where they want to die, and even planning their own funeral, can help to give them some sense of control. Not every young person will want to talk about these things, but it’s important to give them the opportunity.

While it can be tempting to try to fill the time with special treats, big holidays or new adventures, sometimes just doing simple, everyday things can be more meaningful. Having routine and a level of normality can be reassuring when so much is changing, and this can be helpful not just for the diagnosed young person but also the people around them.

At the same time, the young person may have things they want to achieve or experience, and aiming to do these things can give them hope and a sense of purpose. Ultimately, talking to them and listening to them is the key.

Redkite is here for you and your whole family at this time.

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