Many in our community do not have a deep understanding of what palliative care is and the role it might play in the life of a loved one. Talking with your child about palliative care can be challenging. It helps to know a few basic facts before you discuss this sensitive and important topic.

What is palliative care? According to Palliative Care Australia, palliative care helps people living with a life-limiting illness to live as well as they can by managing pain and symptoms to ensure their quality of life is maintained. It identifies and treats symptoms that may be physical, emotional, spiritual or social. It is not merely a synonym for end-of-life care. There is so much more to it than that.

Palliative care shows respect for life. It does not seek to unnecessarily lengthen life or bring death on faster, but respects life and upholds human dignity. It is not euthanasia. Rather, it respects the sanctity of human life and gives patients some control over their treatment in their time of need. It has long been a significant part of health and aged care in our Catholic tradition. Palliative care aims to bring comfort to people and maximise their quality of life by attending to their spiritual, physical, and mental needs.

Palliative care addresses many needs. It may be used in response to an end-of-life situation or in the case of a patient who is suffering the effects of a progressive condition that cannot be cured. Chronic or life-limiting illnesses affect people of all ages and it may be that palliative care is the most appropriate response in the case of a child’s medical condition. It may be difficult for children or young people to understand that a friend or sibling close in age requires palliative care. In such cases, conversations with children need to be handled with great sensitivity. If you or your child would like further assistance, a list of organisations you can contact can be found here.

Palliative care is not something to be feared. It is much more than end-of-life care. It is different for each person depending on their needs. People receiving palliative care have input into how much and what kind of care they receive. It can take place in a clinical setting, such as a hospital ward, but much of it occurs at home. Either way, it is care that is provided by a nurturing and supportive network of highly-trained healthcare professionals.

Palliative care strives to lessen patients’ pain and stress. It also sets out to treat other symptoms that cause discomfort, including nausea, insomnia and constipation. Sometimes, these symptoms can be stabilised in a hospital and the patient can return home and receive ongoing care. For others who are close to death and unable to manage at home, there are hospice services available. You may need to explain to your child that as we go through life, we might experience various symptoms because of a medical condition we have at the time. For instance, if we have a cold we might sneeze or cough. You may need to explain why a loved one is experiencing certain symptoms, which may be upsetting or difficult for a child to understand. For instance, why someone might not be able to keep down their meal or why they cannot walk without assistance.

Effective palliative care must always be a genuine option. One of the arguments made in favour of euthanasia is that it grants a suffering person choice and autonomy. Adequately resourced palliative care also grants a suffering person choice and autonomy. However, have we, as a society, done enough to make it a genuine option for all? Michael Casey, Director, PM Glynn Institute, Australian Catholic University, asserts: “If the choice is between assisted dying on the one hand, and the absence of effective pain and symptom control on the other, it is a false choice and one which is unjust to offer.” We must also consider respect for life and solidarity with the weak and vulnerable. Before any decision is made around legislating for voluntary assisted dying, governments and law makers should ensure that everything possible has been done to address the significant gaps that exist in the provision of and access to palliative care.

Whether at a hospital or at home, our loved ones do not need to die in pain. Expert palliative care professionals now have some very effective treatments for pain. In providing pain relief, their task is not to make life longer or shorter, but to help us or our loved ones live as well as possible until we die. These professionals can also help us to find meaning as we or our loved ones face death. This is a difficult time for us, our family and our friends and is a time at which we all need a lot of support, including our children. We will feel different things at different times, such as sadness, confusion, fear, anger and peace. It is important that we support one another and, in trust and compassion, share our feelings with those we love. It is particularly important that we get a sense of how our children are feeling, listen to them, and comfort them, as needed. It is a time for us to be close to our loved ones and to God, so that we feel a sense of belonging rather than feeling abandoned.

We should all be aware that God loves each one of us more than we can know, and this is the case now, up to the time of death, and beyond. Our children need to know that death is a normal part of life, something we will all experience – it is a necessary part of the gift of life that God has given each one of us, but it is not the end. We look forward to eternal life with God.

We can tell our children that our lives are precious to God and that we should do all we can to defend life from conception to death (for younger children, we can say that God loves us even before we are born). We extend this belief to showing respect for those who have died. This is not only demonstrated by the rituals that are performed following death, but by the way in which we treasure the memories of our loved ones after they are gone.

A related article you may wish to consult from CCSP’s November 2019 edition of Parent Talk is Talking with your child about death. Access it  here.

Note:    The above quote from Michael Casey is taken from the Foreword of an Australian Catholic University report entitled A Snapshot of palliative care services in Australia. This comprehensive report is recommended reading and may be accessed  here.