It was started through the personal efforts of Joan Hunt, a British pensioner living on the Costa del Sol whose husband died of cancer, but the Fundación Cuidados del Cáncer, otherwise known as Cudeca, has become one of the most important solidarity projects in Andalucía. With more than 1,000 volunteers and nearly 1,500 patients the chief executive and medical director, Marisa Martín, says there is a need to expand and intensify research into ageing and palliative care.
How are patients, normally, when they come to Cudeca?
It varies; some people's hopes have suddenly been dashed, others come knowing that the end is near and some don't actually know how ill they are. Palliative care used to come at the end, but now we try to ensure that this type of care is available at an early stage of the illness. Sometimes our patients are undergoing treatment like palliative chemotherapy or radiotherapy, which won't cure them but tries to minimise the symptoms and help them live longer. The expectations of being able to control the illness have grown, but when patients come to the palliative care unit it means the end is approaching. Everyone deals with that in their own way.
I suppose there is no 'right' way to do so.
No, there isn't. Nobody knows how they will react. Not even us, even though we have seen so many patients.
Is there still a long way to go in research into palliative care?
Yes, definitely. It is a new discipline. In Spain, the first palliative care units were created in the late 1980s. We now have more information about controlling symptoms and pain, but there are more complex needs such as emotions and the difficulties faced by families. In 2018 we were accepted as the first group associated with the Malaga Biomedical Research Group (Ibima) and we hope that between us all we can meet the needs of the patients and their families.
What is the aim of the agreement with Ibima?
We want to boost research and we want that research to reach the professionals who work with the patients every day. It is often said that research needs good questions, and those with the most important questions are the professionals who are at the patients' bedsides every day. We have to be receptive to know how the patients and their families want us to look after them and communicate with them. There are clinical questions about aspects like pain control, asphyxia and treatment for the appetite, but there are also other needs. We want to integrate the results of the research into daily palliative care.
And what questions are you normally asked?
There are a lot of them, to be honest. The treatment of pain has evolved a great deal, but other symptoms, such as asphyxia, are still treated as they were 20 or 30 years ago. In that sense we would love to advance. In the communication process too, because we want to respect patients' independence. These are very important conversations: how and where they would like to be treated if the illness gets worse, what values are important for them... at Cudeca we have been working for months on a conversation guide for those whose illness is at an advanced stage. It's difficult for us as well, but if we want to attend to the patients in the way they wish us to, we have to ask them.
In the short term, how does the future of palliative care look?
At the level of strategic planning, we are seeing that the ageing of the population will bring numerous problems for the health and social support systems. Palliative care will be very necessary, because the population is getting older and there will be many deaths as a result of illnesses, whether cancer, organ deficiencies or neurological illnesses. We want to work on those lines to identify the most complex situations. Pain control, for example, shouldn't be a problem for any professional, but there are more severe conditions which need special qualifications.
What tools do the families have to deal with this type of diagnosis in someone close to them?
We professionals need to be able to support the families and give them plenty of information about what is happening, even though it may be hard. Not being informed doesn't help people to cope. There is practical advice about caring for patients on a daily basis, but we also have to be receptive to the needs of the families. For us, as professionals, it has to be a constant exercise in respect and understanding. The families are the only ones who really know what they are going through. The rest of us should support them with dignity and be available to them. We also work on things like compassion and empathy.
As a professional, is there any way to protect yourself? Because it must all be very stressful emotionally.
Suffering is present in everything we do, we are not immune to it. More than protect ourselves, I would say we have to look after ourselves, find a way of accepting this suffering and closeness, but also be able to release these emotions afterwards. Continual training is very important to improve and feel more secure, and personally I believe that one of the best protections for professionals is to work as a team. There is no profile of professional that can attend to all the needs that arise. There are doctors, nurses, auxiliaries, psychologists, social workers, physiotherapists, volunteers... among all of those, you feel stronger. And that team serves as a forum to share the suffering we take on. But one of the first lessons in this profession is that you learn to value and enjoy life.
Has the stigma which used to surround cancer, such a long and painful illness, gone now?
Things are changing little by little. The word cancer still means the possibility that death is near, and that makes people afraid, but it is true that there are new therapies and ways of controlling the illness.
Have you considered moving the headquarters from Benalmádena to Malaga?
As you know, Cudeca was started on the Costa del Sol by Joan Hunt. In the first 15 years it was mainly supported by the foreign community, but now we have more than 1,000 volunteers of whom more than half are Spanish, and we appreciate the collaboration of Malaga society. I don't think the location of the headquarters matters, although maybe in future we will need to have a branch in Malaga, rather than move this one, for the simple fact that the work will be more efficient. Cudeca isn't based anywhere in particular, it exists to help those who need its services.
What's it like, taking over from Joan Hunt at Cudeca?
That's a difficult question. Nobody can replace Joan. She is generous, intelligent, ahead of her time, brave, and ethically impeccable. She is a visionary. She became a widow in a foreign country and, as a pensioner, she wasn't rich and didn't have influential friends, but she decided to start Cudeca anyway. She is a very special person. She has taken a back seat in recent years, but nobody can replace her. However, we as a team are highly motivated to continue her work.