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/ Monforte & Porta

Monforte & Porta: When we talk about palliative care we should be talking about life

"When we talk about palliative care we should be talking about life"

Does the desire to die really exist? Can someone really want to end their life? And if so, what are the reasons behind it? Everyone has a natural instinct to survive. Even patients. So what leads people to consider ending their life? “Because they are suffering”, they say. That’s why we have the WeCare Chair at UIC Barcelona. “We care”: “Nosaltres cuidem”. “We find clinical solutions to help patients who are suffering”- this was the idea that started the initiative six years ago. Giving patients greater visibility through research. “It’s not just about the theory”, explains Cristina Monforte, Head of Nursing at the Faculty of Health Sciences, “but it’s about looking at how we can put what we do into practice, so we can improve patients’ situations”. Alongside Josep Porta, she is also a lecturer at UIC Barcelona and head of research and teaching in the palliative care unit of the Catalan Institute of Oncology (CIO), where they are both directors. Monforte had over ten years of experience in healthcare before she started dedicated herself fully to academia. Porta works in palliative care and aims “to be sensitive to the patient’s suffering; first and foremost, it is someone who needs you”. Caring. This is what both doctor and nurse do. It’s a task for all of us, remarks Dr Porta.


Cristina. It’s true that caring for others is the essence of the nursing profession –although in this case there is no recovery– but in the end, when there is nothing more that can physically be done, all that’s left is to care for the patient, which is something we all do.


Josep. Exactly, it’s a task for everyone around the patient; we all have to be aware that we are dealing with a person, and as such, they are going through a lot of things. One of those things is being ill, having physical problems, but there are also a whole host of social, emotional and existential aspects that anyone, ill or otherwise, could be suffering from. For those of us working in palliative care in particular, it is especially important to be sensitive to this kind of suffering.


What can you do for someone who wants to die?


J. The first thing is to realise that behind that idea there is suffering…


C. Yes. In reality, not many people want to die. It is normally a reaction to the fact that they are suffering on many levels: what they want is not to suffer, and they see death as the only way to end their suffering. The physical illness is not the main reason they want to die, and rather there are other emotional, psychological and even existential reasons, as well as a lack of social support. It is therefore more logical to try and alleviate that pain, which is what they really want, rather than ending their life. Don’t you think?


Yes of course, however: it might be possible to avoid physical suffering, but not psychological suffering…


C. Why not?


Is it possible?


C. Yes… Of course it’s true that, there are often well-known and applied treatments for physical suffering, with evidence to back them up. In terms of emotional pain, there is less evidence, but there are ways to ease the suffering; that’s where we aim to take out research. Just because it’s difficult doesn’t mean we shouldn’t try: we need to find solutions. Through our research we are trying to show that certain therapies or treatments improve the well-being of patients, reducing their suffering. That has to be our main focus: not allowing any patient, nowadays, to suffer.


J. And that is something we can also achieve through dialogue. Of course people don’t like talking about these topics, but how many times do we talk openly about suffering, exploring what it is, what the reason is for suffering, and so on, and things change! We need to talk and open the door to more dialogue that, unfortunately, a lot of the time –or I would say, most of the time– we don’t have; not so much because we can’t but rather because we don’t know how to deal with the responses.


Do medical professionals need to be properly trained?


J. Yes. I wouldn’t say it is suicidal to go into palliative care without any training, but almost. You need to have specific training on things that might seem obvious, but that are worth talking about: not only in treating the symptoms and everything that is behind each one, but in the technique of managing the “bad news” you sometimes have to give; understanding that it is a process of loss and grief, not only because of death itself, but also because of the physical condition that allows you to do a number of things; knowing how to deal with families and understanding their dynamics… It’s a way to avoid dramatic situations in which people can’t see a way out and, rather than live that way, would rather die. We would probably save ourselves a lot of trouble if we knew how to handle each situation early. And you have to learn how to do that.


But is it possible to live with death?


J. We all know that we will die and people are very realistic about that. It’s clear that no one is thrilled about it, but that’s the way it is: human beings are still 100% mortal! And when we talk about it at the hospital, they tell you: “Doctor, I knew that it would be my turn one day or another, but while I’m still here, I will just get on with it; and if I can live in good conditions, even better”. And you see that, when you treat the patient as a person, with all their different quirks, I can attest to this, there is no place better for humour; and not just because it lightens the mood, but because it illustrates what’s dramatic and what isn’t. In palliative care units you see it all: you make jokes, and patients make jokes about their own situation… It’s not pleasant, but it doesn’t have to be as dramatic as you sometimes see.


C. In fact, when we talk about palliative care we should be talking about life, not about death, because it means living well until the very end – not helping people die. That’s what a palliative care unit is all about: giving quality of life. The people we care for aren’t dead, they’re alive, and we need to help them live in the best way possible in the situation in which they find themselves.


Removing palliative care from the association with death


C. Yes. From what Josep was saying beforehand: moving forward; so that when someone is diagnosed with a life-threatening illness, one that threatens their integrity, the patient should receive a visit, at the same time, from a palliative care specialist, to help them live with their situation. Many studies have shown that, if you tackle the situation of patients in palliative care early on, they live longer and have a higher quality of life. Hopefully we will be able to change their focus! Palliative care is about life, and helping people to live well, to live better. That is our aim.


Does palliative care ensure the patient doesn’t suffer?


J. There is no such thing as 100% certainty in biology. Ever. Don’t forget: Being human in itself is linked to suffering. We all suffer in some way. The more you love, the more you suffer. It is impossible to avoid suffering, but we can help people to handle it better. That might not seem like much, but it means a lot for people who are suffering. We can’t avoid death, nor can we try to shorten life or lengthen it. It is the final chapter in your biography, and as such, we accept it, and suffering is part of what it means to be human. We all suffer.


How do a doctor and a nurse manage to suffer alongside the patient without feeling completely crushed by life?


J. Of course it’s not easy. You have to be by the patient’s side: not ahead of them or behind them, but by their side. You have to go through the process with them. They need to know that they have someone with them – a person and a whole team, as no one works individually – who understands them and who they can trust. Like we said earlier: talking about the difficult things, with sensitivity. It might seem trivial, but it helps a lot.


C. I would also like to add that both healthcare centres and patients have to see death as an integral part of treatment.; in other words, if you are unable to accept death as part of life, then every situation, every diagnosis and every death will take a toll on you. It affects us all: there’s nothing wrong with a nurse who cries with the family when a family member dies: we are all human, aren’t we? But there has to be a middle ground: integrating death, accepting it and working on it in order to accompany patients. I have a theory: if a nurse ever gets to the stage that death doesn’t affect them, they need to take some time off, go home, rebuild themselves and then come back. But that same nurse can’t go home crying every day. It’s normal. It’s true that staff have much more training and experience when they work in palliative care, but all healthcare professionals should be just as prepared.


What do you learn from these situations?


J. I learn a lot. Every day. The privilege we have working in palliative care is that we are dealing with real people from all walks of life who give us lessons about life: every illness is a story. There are very dramatic situations, of course, and it can be hard to understand how a young mother who has been diagnosed with breast cancer and has young children, is able to, after holding on for a while –of course it’s not a question of one day to the next, you know– say goodbye and get her things in order… things like that never cease to surprise me. But people manage it. What happens is, your values change. Prestige, money and so on… everything gets turned on its head. Patients are the ones who put the pieces back into place. It’s incredible.


C. One of the things that really stands out to me is how much people are able to adapt to their illness. They often find themselves in extreme situations, and of course they are ill, but nonetheless they still say: “No, it’s not my time yet; I’m doing OK”. I find that very surprising. People can get used to anything: just as people can adapt to living at the North Pole, so too can people adapt to living with a very serious illness. And that’s something that only human beings can do.


Where do you think the line should be drawn in terms of living with dignity and life not being worth living?


C. To tell you the truth, I don’t think we should be talking about living with or without dignity. Dignity is an essential human characteristic. Very often it is judged because it can be measured with parameters that link dignity to independence, which means being able to move, taking decisions, being free. That means that when you are not independent you become dependent and no longer have dignity… and that’s not the case. Life continues to be dignified because the person is dignified. We need to start changing this social idea because it has become widespread: we judge things as either dignified or not, when the most important thing is taking care of people well, because they are important to us.


The perspective of others…


C. Yes of course: why does anyone need to know that we don’t think their life is dignified? There is an expert in Canada, Chochinov, who talks specifically about being seen with dignity: how we look at a person, a patient, and transmit that “I see your dignity, you are important to me”. How we care for and take care of people has a lot to do with encouraging this perspective.


J. Talking about the perspective of others is crucial: people who are ill don’t have anything to do but look at those around them, and they depend on what others see, on things that aren’t verbal. It’s not so much about what you say, but rather about what you do: how you look at them, how you shake their hand, how you pay attention to them… and automatically the perception of the person changes. If you look closely, it depends a lot on the environment: we have to know how to make them feel like their life is worth living. You are worthwhile because you are you. And that’s enough.


What has brought you the most satisfaction in your job over the years?


J. We could spend a lot of time on this question… The truth is that I find the relationship with the patient and the family in these situations a source of great personal satisfaction, because you probably get back more than you give. There is also a lot of satisfaction to be gained from the Chair…


C. Exactly! In our research I think there are lots of different reasons to be cheerful, because of what we find in our research. Those moments when you say: “Eureka!; we’ve found an idea that can ease suffering, something that the patient enjoys and appreciates: it might be a good idea, let’s continue along these lines”. Sometimes it’s just a millimetre of improvement, but that’s already a lot.


J. Having a university Chair like this is a luxury, because it lets you conduct research in areas that don’t normally receive much funding. It has a direct impact on your feelings and on people’s lives because I think the research we do is very important: I am absolutely convinced that it is important to do research on this year’s breakthrough molecule, I don’t want to take away from that, but if we are talking about suffering and other things instead of a molecule then they aren’t interested. They say it isn’t important enough. That’s what they told our research group not very long ago.


“Don’t spend money on it…”: why aren’t there more dedicated resources?


J. “I mean, they are going to die anyway”, they say… It’s cheaper to put an end to “the problem”, of course… and that’s where the issue lies. We live in an extremely utilitarian world where if something is worth something, good, otherwise it gets thrown away. When we talk about human beings, I don’t think this idea should come into play at all. Many of my colleagues in palliative care have complained –not just me–. More recently there is also the issue of a euthanasia being decriminalised in Spain, where approximately seventy-five thousand Spaniards die every year in suboptimal conditions. It’s true that we are in a privileged position in terms of palliative care in Catalonia, but on the other hand, there are many aspects that are not so well taken care of. Like research, for a start. That’s why it doesn’t make any sense. It’s difficult to understand why they are thinking about decriminalising euthanasia, when people only have access to limited resources. It’s hard to see people dying every day when they haven’t been helped with trivial matters – like people who can’t ask for time off work to look after family members who are ill. They don’t spend money on this kind of thing, while on the other hand, we are already set to pass a law that decriminalises euthanasia, which is surely much cheaper than investing money in research.


C. Offering palliative care in the early stages of an illness would save money; if the system was well designed, we would save money on emergency resources, visits and appointments, etc.


J. And there would be much less suffering.


Is palliative care the “alternative” to euthanasia?


J. I want to repeat that palliative does not aim to lengthen life, nor shorten it. Having said that, I would try not to mix euthanasia and palliative care because one thing is medical and nursing practices, and euthanasia does not fall under that definition. We want to reduce suffering, or help people to live out the final stretch of their life. This used to be just a few weeks and fortunately now we can accompany our patients over the course of several months. Many months. Sometimes even years. This takes effort, a lot of work; it a hard task, one that is difficult for everyone and that uses lots of resources.


Are we facing an ideological debate, perhaps?


J. Everyone has their own set of values, and some put independence first… And yes it’s true that, at least from what I’ve heard, people who defend euthanasia want palliative care to work as well as possible. But then after they say it, I don’t see anyone making a great deal of effort in that respect. We have to dedicate ourselves to what we know best: taking good care of people. Because we have experience doing it: when you intervene during the early stages, you are working alongside the patient and the family, making a proactive effort and so on. I won’t say that there are absolutely no borderline situations, there is no such thing as zero, but you really do save so much suffering and so many requests to die that could otherwise arise.


C. Euthanasia should never be the solution. The solution to what? To ending life?


It’s supposed to be a solution to suffering


C. Yes, just like treating pneumonia, which can be treated efficiently. Euthanasia isn’t about fighting against the problem, but rather about dealing with it, and what we need to do is find solutions, rather than putting an end to the problem in this way. Man was born to live. We all want to live: it is written into our DNA. When people say they want to die, and I’m quite adamant about this, that is not their primary motivation. What they want is to put an end to the suffering.


J. It’s difficult to defend the position, without being able to guarantee that you already have all the necessary resources. I find it very difficult to understand.


The reality is that euthanasia is already in practice


J. Unfortunately, it is. Euthanasia is a tool to reduce the average hospital stay… I would like to see someone talking about a new law investing €10 million every year in training professionals in palliative care. I would like to see that, but I think the former will happen first.


Does the palliative care clinic planned by UIC Barcelona aim to solve some of these problems?


C. Yes, it aims to help care for people who are at this stage in their life. Like Josep said earlier, Catalonia, together with Madrid, is the autonomous community with the best palliative care facilities. Nonetheless, our university is focusing on, in some way, applying or contributing to our research and our way of being and doing, to help these people in society. It won’t be a unit like any other, and it rather aims to reach a level of excellence thanks to the fact that all of our research and scientific evidence will be applied to caring for these patients.


Is there anything in particular you remember your patients having told you?


C. It’s incredible how much they thank you. After a while they send you a letter to thank you for everything you’ve done. It’s really moving. And it’s also professionally satisfying: “I can’t have done a bad job”, you tell yourself…


J. People are always grateful. Family members of the person who I was treating, and who has just died, often give me gifts: the person died, you can’t understand it, but they show their thanks; because you were there for a short while, but it was intense. And you were definitely able to help. That really moved me, especially at the beginning. The first thing they do is to give you a kiss on the cheek: they don’t have to say anything else; especially women of a certain age, I suppose they are already too old for social norms. They grab you and ask: “Do you mind if I give you two kisses? “Go ahead”. And that’s it.


* This interview was taken at the Comprehensive Centre for Advanced Simulation, at Campus Sant Cugat (UIC Barcelona), for the 5th number of the printed edition magazine.