Palliative Care and Complex Chronic Patient

We understand that you can feel confused if your doctor has given you the chance of the palliative care team start tracking your child.

However, note that receiving palliative care or not does not change the situation of the disease, or the objectives of the medical team that has treated your child until now. Only the evolution of the disease and the desires of your child and your family can modify the objectives.

It is very important to know why he has chosen this particular moment of the disease, so do not hesitate to ask if you have not been given this information.
The causes may be different, such as:

• Perhaps the symptoms that your child is being difficult to manage the disease progression and complications in the short-medium term are expected.
• They could focus home care and spare you having to go to hospital as often.

The reality is that the palliative care team know the case of your child almost from the diagnosis. But his work until now has focused on advice and help with disease management specialist you already know.

The fact that you now know them, is that the overall situation is more complex. The benefits of our intervention are greater than so far and can better respond to the new needs that have arisen in the course of the disease.

Serious illnesses often require aggressive treatments that can cause pain and other symptoms. Discomfort and suffering may occur, but we can anticipate and try to control them properly with palliative care to minimize its impact.

That's why it is essential to combine the healing, specific treatments for the disease, with palliative treatments, faced to deal with the consequences of this.

Receiving palliative care does not equate to withdraw or limit the treatments, and the measures applied may be transient and even an improvement of the disease occur.

If it is not possible to cure your child's disease, the goal may be to stabilize or slow its evolution and ensure that their daily lives are normal and with the best quality of life possible.

It is possible that the trips to the hospital since your child is sick are constant. The hours in waiting rooms and visits to several specialists become routine for the family. Even revenue plan are common.

As the disease progresses and you need to increase your child requires care, medical support can mean spending more time in the hospital.

Since the Service tried to focus palliative care home care to reduce the need to come to the hospital as often or even reduce the number of visits to specialists.

Our experience has taught us that when problems can be solved at home the stress level of the whole family decreases.

Severely ill children, when they are in their last days of life, they often want to be at home, among his toys in his room, accompanied by brothers and the rest of the family. Our team makes every effort to make this wish come true and accompanying parents throughout the process.

Parents also have more availability to perform normal activities of running a home, work or care for other children. The attention that your children will receive is not different than in the hospital.

Depending on the situation of your son, our home team can apply the same treatment that would be provided in the hospital. What changes is that we pursue comfort the child above the clinical outcome, since the objective can no longer be cured, but that their quality of life as good as possible.

It is normal to feel fear and uncertainty when you think about caring for a child at home until the end. Our team will help you by telling you what can happen and teaching you the medication management and care that your child will need. In addition you will have a phone 24 hours a day to call for any question.

It is impossible to know how long a person will live. Each child is unique, and not everyone responds the same way to the same process. But, based on your child's clinical course and symptoms, we are able to determine whether their life is approaching its end. At such times, making decisions can be complicated, and when this happens we will be by your side as before.

 Sometimes, treatments may not improve the condition, or they may even cause more harm than good. At such times, we need to focus on what is good and what might be bad for your child, to ensure that their quality of life is the best it can be.

 The more difficult it is to cure a disease and the more serious it is, the more important family is, because a family is unique and has its own values and history. So the doctor may ask you whether the measures taken for your child seem in line with your family's values.

The Palliative Care and Complex Chronic Patient Service aims to provide your family with the tools to make this sad and difficult situation less frightening and minimise the suffering involved. We will help to support your ability as a family to manage the difficulties you face.

In addition, there are the issues of household finances, care of other children or sick people, or work, all of which make it difficult to take care of your child and support them during their illness. At the Palliative Care Unit, we can advise you on which resources, both human and material, you may need and help you wherever possible.

"Thanks for joining us on this long road, making our lives easier and helping us to accept the unacceptable. In these painful and difficult times for the family, being able to count on your help, support and know-how is priceless, and it is something we will never forget". - Testimony of L. B.

"They advised, encouraged and comforted us with their follow-up through home visits and regular phone calls. We were always able to get in touch with them for any emergency. We have nothing but good things to say about these professionals, who have helped our son throughout his incredibly complicated journey. It would have been impossible to do all this at home without their support". - Testimony of M. C.

"The palliative care team makes a great work, work that not everyone is able to do. There are many positive characteristics that can define them: altruism, solidarity, empathy, strength, perseverance, companionship, kindness, generosity, and many more. We went through many experiences together, and despite the difficulties, we have learned and they have taught us a lot. But if we had to zero in on a single thing – one detail, a moment, a virtue – we would say that they were always there when we needed them". - Testimony of E. R.

"You made everything easier. We were calmer at home because we knew that we could call you at any time. On the phone there was a voice that was close, professional and above all human, which we could trust and discuss our fears. You gave us and to our son an appropriate response and care. [...] Thank you for helping us to enjoy wonderful moments with our son". - Testimony of F. A.