5 Priorities for End-of-Life Care

With any kind of palliative care, the realities of end-of-life care is a difficult but necessary conversation to have. It is a profoundly personal aspect of healthcare that touches every family at some point. Whether for an adult or a child, the journey is fraught with emotional challenges, and making informed decisions can ease some of the burdens. With input from our palliative care nurses, this article explores the five key priorities for end-of-life care, shedding light on both adult and paediatric perspectives. Understanding these priorities can help families navigate this challenging journey and ensure their loved ones receive the compassionate support they deserve. 

One of our paediatric nurses notes, “The priorities are very much the same about making them as comfortable as we can. But for paediatric patients, the preferred place of death is often at home, although this can change during this end-of-life phase. Whereas for adults, it can vary more.” This preference reflects the desire to provide a familiar and comforting environment for children and the greater flexibility in delivering care at home.

Whether in hospice or at home, the practicality of end-of-life care surrounds making the person as comfortable and pain-free as possible, and this comes with a deep understanding of what they and their families are going through. It’s a holistic approach that’s as much about the physical as it is about the emotional and spiritual wellbeing of the person. There are many priorities for everyone involved, but let’s take a look at five key priorities for end-of-life care.

2. Sensitive and Honest Communication

Communication in end-of-life care must be both sensitive and honest. It should be tailored to the patient’s age and understanding, involving family members in a way that respects their cultural and spiritual values. When it comes to discussing end-of-life care, it helps no-one to talk in ambiguous terms, but it must also be approached with tact and empathy.

Our nurse points out the importance of involving additional support when needed, such as chaplains or counsellors, to address cultural or spiritual concerns. “We might need to bring in a chaplain or other religious figures, depending on the family’s beliefs,” she explains. These considerations help ensure that the patient and their family feel supported and understood.

3. Involvement in Decision-Making

Empowering patients to make informed decisions about their care is crucial, but the approach varies between adults and children. Adults can generally make their own decisions, while for children, it often involves parents and guardians.

Our nurse highlights the importance of including the family, especially when dealing with paediatric patients. “For children, parents may be directly involved in administering medications and are making care decisions,” she says. This involvement is vital, especially when the child cannot decide for themselves due to age or capacity.

However, when children are capable, it is equally important to empower them. “If the child and young person can be part of these conversations, especially for teenagers, they should be involved in all discussions about their end-of-life care,” she emphasises. She adds, “Ultimately, if they are under 16, decisions are made with the parents, but we always try to involve the young person as much as possible.”

Our staff describes the comprehensive support offered to families in paediatric settings: “Counselling and therapy services are provided not just for the patient but also for parents, siblings, and other family members.” She further explains that hospices often host events and activities to engage the whole family, providing a supportive environment for everyone involved.

She also notes that feedback from families is a priority to ensure the hospice meets their needs and preferences. “We are trying to find out exactly what families need from us. When we have our children’s centre, we hope to offer more tailored support, like sibling groups and parent support groups.”

5. Developing and Delivering Individualised Care Plans

Creating care plans tailored to each patient’s unique needs is fundamental in end-of-life care. For adults, this might involve addressing specific medical conditions and providing emotional and spiritual support. For children, the approach is more holistic, involving the entire family.

“Care plans for paediatric patients are highly customised to address the specific needs of each child,” our nurse explains. “This includes medical equipment, medications, and activities.” The care plans are developed through collaboration between the care team, the patient (if possible), and the family. “Any adaptations needed are done together with the nurses and the families,” she adds.

She also highlights how care plans must be flexible and responsive to changing needs, especially when the child is at home. “When patients want to leave the home, the care plan is adapted to ensure all necessary supplies and precautions are in place,” she says.

Prioritising Holistic End-Of-Life Care

Understanding and implementing the five priorities of end-of-life care is crucial for providing compassionate, high-quality support for adult patients and access to care for paediatric patients. By recognising the unique needs of different ages and backgrounds and tailoring care accordingly, hospice services can ensure that patients and their families receive the best possible care during this challenging time. 

Ultimately, it’s not about ticking boxes or crossing off lists though. It’s more about painting them a beautiful sunset rather than simply counting down the time. It’s a time that takes a toll on everyone involved – the carers, family and the person themselves – and so empathic, personalised and dedicated care is always the top priority.

If you or a loved one are facing end-of-life care decisions, reach out to our experienced team to find out how we can provide personalised at-home hospice care that honours these essential priorities and supports your family every step of the way.