Palliative Care and Chronic Complex Patients

We understand that it can feel confusing when your doctor offers your child follow-up with the Palliative Care and Chronic Complex Patients Department.

However, please remember that whether your child receives palliative care or not, it does not necessarily change the disease's outlook, nor does it change the goals of the medical team that has treated your child so far. The only things that can change our clinical goals are how the disease progresses and the child and family’s wishes.

  It is very important that you know why this specific point during the disease has been chosen to start palliative care, so do not hesitate to ask questions if you have not yet been told.

There can be several reasons, such as:

• Perhaps your child’s symptoms are becoming difficult to manage, their disease has progressed and there are expected to be short-mid-term complications.
• Care could be provided at home instead, meaning you do not need to come to hospital as much.

The reality is that the Palliative Care team knows about your child's case basically since diagnosis. But their job at that point is to assess the disease and assist the specialist you have been dealing with so far.

The fact you now know of us is because the situation has become more complex. Our involvement is of better benefit to you now than before, and we can help respond to new needs that have arisen due to the disease's progression.

 Severe diseases often require aggressive treatments that can cause pain and other symptoms. They can lead to discomfort and suffering, but we can anticipate these symptoms and try to properly manage them with palliative care, therefore minimising their impact.

That is why it is essential to complement curative, targeted treatments for the disease with palliative care, which is meant to ease the symptoms. 

Receiving palliative care does not mean withdrawing or limiting treatment. In fact, measures that can be implemented can be short-term and even help improve the disease.

If curing your child’s disease is not possible, the goal could be to stabilise or delay its progression, thus helping daily life feel more normal and improving overall quality of life as much as possible.

Coming and going to the hospital with your child can feel never-ending. Spending hours in waiting rooms and appointments with lots of different specialists can become routine for families. Even being admitted to a hospital ward can feel like just another day.

When the disease progresses to a point where your child requires a greater degree of care, this can mean spending more time in hospital.

Our experience has shown that stress is reduced for the whole family if problems can be addressed at home.

In their last days of life, severely ill children often want to be at home, with their toys, in their room, with siblings if they have them, and with the rest of the family. Our team does everything we can to fulfil these wishes, supporting parents throughout the whole process.

As such, parents will have more time for other tasks, such as running the household, work, or looking after other children. And all of this, while providing the same level of care your child would receive in hospital.

Depending on your child's situation, our team can administer the same treatments at home as they do in the hospital environment. What actually changes is that we put the child's comfort above clinical results. The goal is no longer to cure, but rather to achieve the highest quality of life.

It is normal to feel afraid or uncertain when thinking about caring for your child at home until the very end. Our team will help you, explaining what can happen and showing you how to manage the medication and care that your child will need. You will also have a 24-hour phone helpline that you can call at any time for anything you need.    

It is impossible to know exactly how long anyone will live. It is the same with children: each child is unique and responds differently to the same situation. But we can base our estimations on your child’s progress and symptoms to figure out when they are approaching the end. Decision-making can be hard here, but we will be by your side just like we have been every step of the way.

There can sometimes be treatments that do not provide any benefit, or that even cause more harm than good. In these situations, we must focus on what is better or worse for your child, to ensure their quality of life is as high as possible.

The harder a disease is to cure and the more severe it is, the more important family becomes: each family is unique, with their own values and stories. This means that healthcare staff may ask you whether the measures being implemented for your child align with your family values or not.

The Palliative Care and Chronic Complex Patients Department seeks to provide families with the tools they need so that this difficult, tragic situation does not become overwhelming, and therefore minimise the suffering that comes with it. We will help you to come together as a family to get through these difficult moments.

In addition, families have other needs—whether financial, caring for other children or sick relatives, or work—that make caring and being there for their sick child during their illness more difficult. The Palliative Care and Chronic Complex Patients Department can perform an analysis of what kind of resources (both personal and material) you may need, and help you as much as possible.

‘Thank you for being there for us on this long journey, for making our lives easier and for helping us to accept the unacceptable. In these painful, difficult moments for our family, having been able to count on your help, your support and your knowledge, is something we can never repay and certainly never forget.’ - Testimonial from L.B.

‘In the at-home visits and regular phone calls we were given advice, encouragement and comfort. They were always there when we needed them, for whatever emergency. We only have good things to say about these professionals who have supported us and our son on this complicated journey that he unfortunately had to face. It would have been impossible to do all of this from home without their help’ - Testimonial from M.C.

‘For us, the palliative care team do a fantastic job, one that not everyone is able to do. They stand out for many good reasons: altruism, solidarity, empathy, strength, commitment, company, warmth, generosity, and so much more. We have been through tough times, and despite the challenges, we have learned and been taught so much. But if we are left with anything, a small detail, a moment, a virtue, it's that they were always there when we needed them.’ - Testimonial from E.R.

‘You helped make everything easier. We could relax at home because we knew that we could call you anytime and at the other end of the phone would be a friendly, professional, and above all, compassionate voice with whom we could share our fears in complete confidence, and that the answers and care we’d be given would be the best for our child and us. [...] Thank you for letting us have precious moments with our son’. - Testimonial from F.A.