The name Cudeca means 'Cuidados del cancer' (Cancer Care), and the charity has been true to its name for nearly thirty years now. Through her work, chief executive and medical director Marisa Martín Roselló, has seen the effects of suffering and death, but she could never have imagined the effect of the pandemic on the foundation set up by Joan Hunt: the army of volunteers who support the project have fallen in number by half, its finances - traditionally based on fundraising events and charity shops - have been seriously affected, and after several healthy years there is now a deficit of around two million euros. Cudeca looked after 1,500 patients and relatives in 2019 and hundreds more this year. Dr Martín Roselló doesn't hide her concern: "We are very worried," she says.
Are things that serious?
Yes, not in terms of the services we provide, which for the moment we are maintaining, but the financial situation. Our funding is strongly dependent on our relationship with people, in the community that supports us. In fact, our main source of income is from the 23 Cudeca charity shops, which are manned by 900 volunteers. They had to close completely during the lockdown, but now that we are trying to get back to normal many of our volunteers are in the high-risk groups, because most of them are elderly ladies.
To what extent are they affected?
Well, before the lockdown we had 900 volunteers and now we are down to 300. Imagine the chaos! We have managed to get some more through social media campaigns, but we still need people who can volunteer for four hours a week, mornings or afternoons, to keep the shops open.
How long do you think you can go on?
I'll explain it in numbers, because I think that makes it easier to understand. During the lockdown we summed up the damage, with the shops closed, and calculated that we have a deficit of around two million euros. And that is half of our annual budget of four million. We have made some adjustments and I would say an optimistic figure is 800,000 euros. And I say optimistic because I don't want to even think about the pessimistic aspect.
And can you still provide your services in this situation?
Yes we are, all of them. The only thing we have had to close is the day unit because with the pandemic you can't have volunteers in centres like ours. However, the six home-help teams are working and the ward with nine beds has continued to operate as normal. I hope we can get to the end of the year without having to close any service, but we just don't know about next year.
The health system benefits from the palliative care services provided by Cudeca, and they wouldn't exist otherwise. Do you feel supported by the administrations?
Yes, we have had meetings, we feel the support is there and we are negotiating for improvements for next year. And I would also like to mention the town halls: their grants have continued even in such a difficult year, and have even increased. There are a lot of people in need and we, involved as we are in the needs of the community, see the situation every day. When someone has nothing to eat, for example, I understand that that takes priority. That's why we are trying to ride out the storm as best we can.
It's only three years since Cudeca celebrated its silver anniversary. You must wonder how things can have changed so much and in such a short time?
I think about that a lot. When we sit down to look at the accounts and see where we were in 2019, with a surplus... but we have been going for 28 years and we can see the support we provide, what our mission is. And I'm very proud of that (she becomes emotional). Your question refers to how life changes. That is exactly what happens to patients with cancer and their families. Suddenly the world stops and everything changes. That's why, when I'm feeling low, I walk around and see the patients and it boosts me to see what we are doing well.
You treat patients in the final stage of their lives. Do you think we focus too much on a cure and not enough on support for people when there is no solution?
Yes, and that applies to society as a whole. We turn our backs on death and even today, in the 21st century, see it as taboo. That often makes it difficult even for professionals to tackle the situation directly. I think we have technified health a great deal, and more people than necessary die in hospitals, but sometimes the security of having that last resource in a hospital is what we look for.
Do you think that with suitable resources all of us could hope to be able to die at home?
Not necessarily. When we started with palliative care people used to say that patients had to die at home because that's where they want to be, but sometimes it isn't possible. For example, last weekend we attended to a family whose relative wanted to die at home but because of his circumstances and symptoms it was very complicated. Sometimes we offer them an intermediate option, because with the unit we have at Cudeca they can have the serenity of being alone with their families and the love that they need at the end.
It was recently World Palliative Care Day, but 50% of terminally ill patients don't receive such care and 75% die with 'emotional pain'. It seems there is still a long way to go.
Yes, but also when you talk to someone about how they want to die we all have an opinion. World Days like this are very necessary because they raise awareness. Also the administrations and health authorities need to realise that investing in palliative care saves money and improves quality, because nearly everyone is going to have an illness one day which would benefit from this care. Not just specialist teams, either; all health care professionals should be properly trained. They should all know how to control people's pain.
What is the first help you can give someone who has just found out that their illness is terminal?
We always try to find out what their symptoms and needs are. It's important that the pain is controlled so we can build on other things, for example emotional support, what worries you about your family, maybe you want to sort out some conflict with someone... if you don't control the physical it's difficult to focus on the rest.
Does palliative care generally work well in the Spanish health system?
There was a very important moment in 2010, with the announcement of a national strategy to increase palliative care with specialised teams, training... but since then no money has been invested in it. And during that time the number of patients who request this assistance at the end of their lives has doubled.
What's your opinion on the debate about the Euthanasia Law?
Most of us who work in palliative care have learned to respect people's own decisions. I can understand that a patient at a given moment decides that is how they want to end their life, but they tend to ask for that when they are feeling very desperate.
Do you think that maybe before regulating euthanasia there should be a Law of Palliative Care?
All of us who work in this field say that. We are committed to preserving life to the end and giving people the dignity and the quality they need. Taking life away just like that, and nothing more, isn't what we want to do. Having said that, if you offer a patient all these options and in the end that's what they want, I have to respect it. What is true, though, is that a patient deserves every effort to be made to avoid things getting to that point, because palliative care also provides dignity in cases of irreversible suffering.