End of life and palliative care for children, teenagers and young adults

Palliative care for infants and children is different from the care provided to adults. It adds an extra layer of support that can be combined with ongoing efforts to control or cure a child’s condition. It is not about giving up hope, the whole team works together to achieve the best possible outcome for your child and your family.

The main focus of palliative care for children is helping them and their families to live as fully and well as possible. Specialists in children’s palliative care are skilled at caring for a wide range of illnesses and at managing symptoms such as pain, nausea and breathing difficulties. They also help families and the doctors caring for them to work through difficult medical decisions, and they can point you towards further sources of support.

How the illness may unfold#

The course of an illness varies and is often uncertain. It may continue with ups and downs over many months or years. For some children it may sadly be a much shorter time, perhaps only days.

A child’s developmental stage, the type of condition they have, and the uncertainty that can come with treatment all shape what your child and your family need. Palliative care services are tailored to meet these changing needs and to give your family the best possible quality of life.

Teenagers and young adults have unique needs#

End of life and palliative care for teenagers and young adults differs from the care provided to either children or adults. Some services have a designated health professional, sometimes called a key worker, to help coordinate care for this age group.

Palliative care for teenagers and young adults includes physical, emotional, social and spiritual support, with the aim of improving quality of life for the young person and their family. Depending on the young person’s age and other factors, they may be supported by specialists in children’s or adult palliative care. Specialists in both areas help families and doctors work through difficult decisions.

As with children, the course of illness may continue with ups and downs over months or years, or for a shorter time. Palliative care services provide ongoing support, including bereavement support, to help your family cope and spend quality time together.

Coming to terms with a diagnosis#

If your child, teenager or young adult is diagnosed with a life-limiting illness, your family’s world can be turned upside down, and you may face a roller coaster of emotions and challenges. If you are a teenager or young adult who has received such a diagnosis, you may be going through many difficult feelings yourself.

After a diagnosis, family members may feel a wide range of emotions, including confusion, shock or disbelief, numbness or emptiness, feeling overwhelmed or helpless, sadness, anxiety, anger, guilt, hopelessness and denial. You may understand what a diagnosis means and still find it hard to accept. It takes time to absorb information, so ask questions and consider what is in the best interests of you and your child.

Seek help if your feelings become overwhelming#

You and your palliative care team can work out specific strategies to support you, your siblings and other family members. You may be dealing with physical, emotional, financial, social and spiritual issues all at once, and each can affect the others.

At times you may feel frustrated, especially when dealing with several services from different organisations, such as disability, hospital, community, early childhood and palliative care services. They are all there to assist you, and ideally one health professional will act as your main coordinator.

Caring for the whole family#

Parents often say that caring for a child with a life-limiting illness is a full-time job that affects their relationships, friendships, community involvement and sense of identity. Some parents find it helpful to take one day at a time, keep some routine and stay flexible with plans.

When a child’s siblings appear to be coping, it is easy to forget that they need attention too. They may be left to their own devices or take on responsibilities beyond their years. Palliative care services can offer emotional support and age-appropriate information for siblings, and help them stay in contact with their brother or sister.

It is natural to want to protect children from bad news. However, children often know more about their own or a sibling’s condition than families expect, so it helps to be as open and honest as possible.

Supporting teenagers and young adults#

Teenagers and young adults face particular challenges as they develop independence. They may have a strong sense of the future and of what their life might have looked like, and may be conscious of how illness affects their appearance.

Support from peers is very important. Continuing friendships helps maintain a sense of normality, and this may include exploring relationships as any young person would. Support groups can help young people meet and share experiences.

Teenagers and young adults may try to make sense of what is happening. They may need space to talk about fears, regrets and hopes, beliefs about what comes after death, or planning a funeral. They need adults to be honest with them and to respect their privacy, and they need to make informed choices so they feel in control. They should generally be treated like adults, though some younger teenagers may at times need the kind of care a parent usually gives a child.

Choosing the right type of care#

Children, teenagers and young adults with life-limiting conditions can draw on a range of paediatric, palliative care and disability services, as well as community-based agencies and doctors. Deciding on the right type of care is not always easy.

Many children are cared for at home, but palliative care can also be provided in hospitals and in hospices. Many families move between home, hospital and hospice as their child’s needs change. Even if you choose care at home, there will always be a place in hospital if a higher level of care is needed or if you cannot manage the demands of caring at home. You are free to change your mind if one type of care turns out not to suit you.

Families are encouraged and supported to spend quality time together. Palliative care services and some not-for-profit organisations offer this through respite care programs. If you feel overwhelmed and need a break, talk to your doctor, healthcare provider or palliative care team about the options.

Care at home#

You may want to care for your child, teenager or young adult at home to keep a familiar daily routine and help them feel secure. At home they are close to family and friends who may be more able to help with day-to-day care. Ask your doctor about palliative care providers in your local community. Providers offer a range of services, including nursing, counselling and, in some cases, complementary therapies such as music therapy and massage.

Care in hospital#

While many symptoms can be managed at home, some need hospital care, for example if you are finding the care too difficult to provide or if certain procedures are required. Most hospitals try to provide a single room and a welcoming environment for your family. The hospital’s team, including doctors, nurses, social workers, youth support and pastoral care, will support you throughout the stay.

Care in a hospice#

Palliative care can also be provided in a hospice that is specially designed for children with life-limiting illnesses. A hospice offers a homely environment where you and your child can stay while care is provided.

You are the most important part of the care team#

Although your child may receive care from many health professionals, their parents, guardians or carers remain the most important members of the care team. Learning about the illness, recognising symptoms and knowing how to respond will help you feel more in control and confident in your decisions. The palliative care team is there to support you and to explain the treatments available.

Usually one health professional will coordinate services and make sure the changing needs of your child and family are met. Keep communication open by being honest and asking questions whenever you do not understand something.

Tips for getting through#

If you are struggling to make decisions or simply to get through each day, the following may help.

• Ask your healthcare team to explain anything you do not understand, there are no silly or wrong questions.
• It is fine to want all the details, or to limit the information when you cannot cope.
• Make decisions that are right for you, your child and your family, not ones you think are expected of you.
• Tell your healthcare team when you are ready to talk about sensitive issues such as future prospects, symptoms or the end of life.
• Get a second opinion from another doctor if you feel you need one.
• Look after your own health as a carer and set aside some time for yourself.
• Share the care among family and friends and trust them to help.
• Set aside time to create memories together, and consider keeping a diary of how you are feeling.
• Accept the support you need, there will be another time when you can support someone else.
• Be open with your family about how you will manage what lies ahead, and talk about your feelings, fears and concerns with someone close to you.
• Seek professional help if your feelings become unmanageable or too difficult to deal with.

Grief and bereavement#

When a baby dies it can be a deeply traumatic event for parents and family. The death of a baby may be due to a miscarriage, a stillbirth or a neonatal death, including sudden unexpected death in infancy, sudden infant death syndrome (SIDS) or a fatal sleeping accident. There are many reasons why a baby dies, and a medical examination is often needed to work out why. In some cases the death must be reported to the coroner.

The death of a child is often the most profound loss a family can experience. From the moment of diagnosis, families experience a series of losses, and you may begin to grieve in anticipation of your child’s death. Support is available, and palliative care services can offer counselling, sometimes from professionals who specialise in bereavement after the loss of a child.

When a teenager or young adult dies, it is a very difficult time for their family, friends and colleagues. Specialist services can provide advice and support.

Grief is a normal experience. Everyone grieves in their own way and in their own time. Parents can feel overwhelmed and may fear for their other children. A sibling’s experience of grief is shaped by their maturity, understanding and life experiences. Palliative care services support families through death and bereavement, and some offer counselling from bereavement specialists.

Referring a child for palliative care#

A child, teenager or young adult can be referred to palliative care services by you or a family member, their doctor, their local health provider, or community services staff. There are both community and inpatient specialist palliative care services available.

Key points#

• Specialists in children’s palliative care are skilled at managing symptoms such as pain, nausea and breathing difficulties.
• The main focus is helping the young person and their family to live as fully and well as possible.
• Seek help if your feelings become overwhelming.
• Ideally one health professional will act as the key coordinator for your family.
• Many parents find it helpful to take one day at a time, keep some routine and stay flexible.

Where to get help#