Convite Para Lançamento do Livro: Bioética Ambiental e Direito - Coleção Diálogos sobre Meio Ambiente Volume II

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CEBID - Centro de Estudos em Biodireito

Comissão aprova definição de família como união entre homem e mulher

Por iG São Paulo * | 24/09/2015 15:43 - Atualizada às 24/09/2015 16:36

Texto foi aprovado com 17 votos favoráveis e 5 contrários

Gilmar Felix/Câmara dos Deputados 24.9.15

Comissão do Estatuto da Família contou com o protesto de manifestantes contrários à definição de família aprovada

Após quase cinco horas de discussão, a comissão especial do Estatuto da Família (PL 6583-13) aprovou o projeto, ressalvados 4 destaques, conforme o relatório do deputado Diego Garcia (PHS-PR), que define a família como a união entre um homem e uma mulher. O texto foi aprovado com 17 votos favoráveis e cinco contrários.

Cinco deputados do PT, PCdoB, PTN e PSol se revezaram na apresentação de requerimentos para adiamento de discussão e de votação da matéria, por serem contrários ao projeto, mas foram vencidos. Eles ainda esperavam o adiamento da reunião diante do início da Ordem do Dia em Plenário, mas o presidente da Câmara, Eduardo Cunha, não abriu o momento em que acontece as votações, pois começou a responder a uma questão de ordem sobre impeachment presidencial.

O deputado Bacelar (PTN-BA) alertou que a Constituição não tem qualquer vedação a classificar uniões homoafetivas como família. “Na sociedade, temos inúmeros arranjos de união que levam ao conceito de família. O que será de milhares de crianças e adolescentes brasileiros que não terão seus direitos assegurados?”, questionou.

A deputada Erika Kokay (PT-DF), também contrária ao projeto, argumentou que o Supremo Tribunal Federal (STF) já decidiu favoravelmente à união homoafetiva, e que o projeto vai negar a esse tipo de união o direito a uma especial proteção do Estado.Bacelar destacou ainda trecho do relatório que afirma que o afeto não pode ser considerado elemento construtivo de uma relação ou para constituição de família. “O afeto está na base da relação humana. É fundamental na construção de uma sociedade.”

Já os deputados favoráveis ao texto procuraram apenas declarar seus votos de apoio para não atrasar mais a deliberação. Estão sendo votados agora quatro destaques para o encerramento da sessão.

Comemorando o resultado, o deputado Diego Garcia disse que o relatório cumpre uma tarefa prevista na Constituição de 1988 e negou qualquer iniciativa homofóbica no texto. “O relatório trata da família-base da sociedade, da família que está esperando desde a promulgação da Constituição uma lei infraconstitucional que a proteja e que traga os principios constitucionais dentro de uma lei ordinária.”.

Segundo Garcia, os parlamentares que o acusaram de homofobia não leram sequer o voto. No parecer, o relator mencionou a necessidade de criação de um artigo no Código Civil para contemplar direitos de todos os tipos de união que não estejam enquadradas no conceito definido pela Constituição Federal.

“Acusar, qualquer pessoa pode. Agora, basta que elas façam a leitura do texto. Não se ativeram nem mesmo a ler o parecer. Em nenhum momento, trago ataque contra homossexuais. Como parlamentar, serei sempre o primeiro a defender os homossexuais e a lutar contra a homofobia”, acrescentou.

*Com Agência Câmara e Agência Brasil

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CEBID - Centro de Estudos em Biodireito

Assisted dying: Hearing arguments for and against a Bill that's divided Britain

While the outcome of the debate remains uncertain, some of those taking part have explained where they stand, and why

• Jonathan Owen, Paul Gallagher 
• Thursday 10 September 2015 20:53 BST

A Private Members’ Bill, if passed, could now make it legal for doctors to assist terminally ill patients wanting to end their lives, in some cases Rex

Today marks a watershed moment in an emotive argument that divides Britain, with MPs debating a change in the law which would allow doctors to help people to die.

Assisted suicide is a criminal offence which is punishable by up to 14 years in prison. But a Private Members’ Bill proposed by the Labour MP Rob Marris would make it legal for doctors to assist terminally ill patients wanting to end their lives, in certain cases.

David Cameron is opposed to the move. “He is not convinced further steps need to be taken and he is not in favour of an approach that would take us closer to euthanasia,” a Downing Street spokesman said.

Dignitas patient Jeffrey Spector with his family. He ended his life in May aged 54 after being diagnosed with an inoperable spinal tumour

This is the first time that an assisted dying Bill has been debated by MPs since 1997. While the legalisation of abortion and the abolishment of the death penalty resulted from Private Members’ Bills, many fail as they are not given as much parliamentary time as government proposals.

While the outcome of the debate remains uncertain, some of those taking part have explained where they stand, and why:

In support

Paul Blomfield, Labour MP for Sheffield Central. His father, Harry, committed suicide in 2011 after being diagnosed with lung cancer

Some of those who oppose a change in the law argue that the relatives will encourage, coerce or pressure elderly loved ones to take their lives prematurely. The evidence and my experience suggest quite the reverse.

I’m confident that my father would have lived longer under the proposed law. He was always clear throughout his life, even before his terminal diagnosis, that were he in that position then he would not want a distressing and undignified death. I think that if the law had been different and he had known that he could have taken that action in his own good time, he would have stayed for longer. It would also have given him the opportunity to discuss it with us, and to go surrounded by the people who loved him and not alone in a garage. The current law was the barrier between what he experienced and a better – and probably later – death.

Paul Blomfield, Labour MP for Sheffield Central (Rex)

I spoke to him the evening that he took his own life. I was in London, walking through a park, and he gave me no inkling of his intentions. And it would have been so much better for him to have been able to talk about it openly.

It is because I knew that he would want me to support the Bill that I have shared his story. It was a difficult decision, because it’s his personal life that I’m exposing publicly, but I did it because I’m confident that he would have been willing to do that if it helped to change the law. I would be supporting the Bill in any case because I believe that it is right. It’s simply underlined by that personal experience.

I don’t think it’s a question of whether the law will change, but when. Sadly the issue is how many people will face needless suffering until Parliament catches up with public opinion.

Jess Phillips, Labour MP for Birmingham Yardley. Her mother, Jean Trainor, passed away in 2011 aged 61

When I was in my twenties, my mother died of leiomyosarcoma. By the end, she was paralysed, her brain had been affected, and she couldn’t see or hear very well either. She had thought she was going to die eight weeks before she did, and my brothers travelled from across Europe to be with her and us. She did not die and lived in pain and suffering for the following two months. When she died, my brothers were not here. I wish she had had the choice; she might not have taken it, but I wish she had had it.

Jess Phillips, Labour MP for Birmingham Yardley

Jim Fitzpatrick, Labour MP for Poplar and Limehouse

The law is lagging behind reality and needs to be amended to reflect 21st-century humanism. I have a totally personal perspective on this.

I was a fireman in London for 22 years, and we used to use equipment containing asbestos for its protective properties against heat and temperature. I, along with thousands of other firefighters, have been exposed to asbestos, which can cause asbestosis and mesothelioma.

From my own time in the fire brigade when I was looking after colleagues who were suffering and trying to help their families in the aftermath, I know how horrid an ending these diseases can bring to human beings.

Jim Fitzpatrick, Labour MP for Poplar and Limehouse (Rex)

For these people, as well as the thousands of other workers and those who contract these types of diseases through no fault of their own, I believe everyone should be given the right to choose how to end their life.

This is not about forcing death on anybody. It’s about giving individuals the right to choose. I’m a big supporter of the hospice movement, and if people want to choose to go into hospices and have palliative care, that’s absolutely fine. But denying other individuals who don’t want to do that their right to choose is double standards.

I’m an MP, I’ve got a good salary. When I retire, I will have the ability to pay for a flight to Zurich and join the Dignitas route. But there are lots of other people in this country who don’t have the financial ability to buy their way out of this – and that’s totally wrong.

Crispin Blunt, Conservative MP for Reigate

For me this is an issue of freedom, this is about freedom of choice and personal responsibility.

What this Bill would really do is empower people; it would at least give them the choice. If you’re going to be faced with these circumstances you would have this option. It would give you that comfort that if things are so absolutely bloody awful that you can’t bear it any longer, and it’s not worth going on, you could have this tiny bit of control over how you die.

Crispin Blunt, Conservative MP for Reigate (PA)

I just hope the rational argument is going to win out. I have never heard an opponent of this ever be brave enough to argue on principle.

Norman Lamb, Liberal Democrat MP for North Norfolk

I’ve changed my mind on this. I had in the past opposed a change in the law, largely because of anxieties about exploitation and pressure. But talking to a range of people with terminal illnesses and also loved ones who have witnessed pain and suffering, I’ve become convinced that a change in the law is necessary. And for me it’s essential to my position as a Liberal.

If you asked me whether I would want to do it myself, I would absolutely want to have the right to make that decision. I don’t know whether I would do it but I would want the right to make that decision, not to be dictated to by the state.

Norman Lamb, Liberal Democrat MP for North Norfolk (PA)

In opposition

Nigel Evans (Conservative, Ribble Valley)

When my father finally succumbed to the cancer that had cruelly eaten away at his once bulky frame for six months in 1979, I thought: “Thank God he is dead.” I wish that it had been quicker and I wish it had been kinder.

My mother cried on his release from the torture. It was hideous. It shouldn’t happen to a dog – and rarely does.

I should be the perfect candidate dutifully to walk through the aye lobby to endorse the “easydeath” departure lounge method of despatching our loved ones. It’s not that I haven’t thought about it. I once saw a man getting on a plane to Zurich. He was gaunt and cemented into his wheelchair. I had seen that look before. The stare of finality as he took his last certain journey to the hotel Dignitas. So why will I refuse to endorse the exit strategy favoured by an increasing number?

Nigel Evans, Conservative MP for Ribble Valley (PA)

I do not believe that it is beyond the wit of our scientists and medical magicians to ensure that care is at the heart of the inevitable journey to the grave. The drugged up ,morphined stupor of my father reaching with his mouth for another slow suck of the ice cube, as swallowing the water was too painful, will remain a traumatic image in my mind.

I want to see assisted living transforming the care of the terminally afflicted. The treatment and careful management of the last goodbye should be engineered with skill and compassion, allowing the fading to be less traumatic with the pain marginalised. It cannot prevent the death, or quell the fear but it can stop the agony and the anguish.

My dad died a pretty ghastly death. Let that be the reason to focus on the right humanitarian way forward. Let’s focus on the care and not be led by our noses to a conveyor belt of corpses via a carelessly thought-out solution. Dignitas-isation will not bring dignity in death but will bring a speedier death. Is that all that the best minds in the world can come up with?

Thangam Debbonaire (Labour, Bristol West) She was diagnosed with breast cancer earlier this year

Unfortunately I won’t be able to attend today’s debate, as it takes place too soon after another of my chemotherapy sessions.

Nevertheless I would like to make it clear that, if I were able to attend, I would not be able to support this Bill. I am not convinced it provides adequate legal safeguards or sufficiently considers the psychological implications for people who are already vulnerable. For example, I have concerns over the reliability of a prognosis that someone can be “reasonably expected to die within six months”, given that illnesses can affect people differently.

Thangam Debbonaire, Labour MP for Bristol West (Rex)

I also believe that much more needs to be done to improve palliative care and mental health treatment for those with terminal illnesses.

It is possible that, as I continue to weigh up evidence and arguments, I may be reassured on the concerns I have. I therefore cannot say I won’t change my mind on this difficult issue in the future. But I am not at that point yet.

Fiona Bruce (Conservative, Congleton)

I don’t believe Parliament should be making a law that says, in effect, that if you are terminally ill, taking your own life is something to think about. Laws are more than just regulatory instruments. They send social messages. The dreadful message this Bill sends is that, while we should discourage suicide for everyone else, we should offer assistance with it to those who are terminally ill.

I am concerned about the lack of serious safeguards in the Bill. It does not require a doctor who considers a request for assisted suicide to take any minimum steps to ensure that the criteria proposed – such as a settled wish or freedom from pressure – are met. It simply states what the criteria are. That’s just not good enough.

Fiona Bruce, Conservative MP for Congleton (Alamy)

Dr Liam Fox (Conservative, North Somerset)

As a doctor I know how members of the medical profession can come under intense pressure from relatives, and sometimes from their own emotions, to hasten death. If medically assisted suicide is legalised, then both doctors and patients will find themselves under new stresses. Pressure on terminally ill patients to kill themselves may come from family or health professionals, but it may also come from those individuals who are suffering themselves, especially if they are concerned about the impact that their illness is having on loved ones.

Perhaps of even greater concern is the potential impact on the vulnerable, especially the vulnerable elderly. How often have we heard elderly people say something like “I just don’t want to be a burden to my family”, or “I think it would be much better for you if I wasn’t here any longer”? Once assisted suicide is legally available, then those with a terminal progressive illness will need to provide a justification for wishing to live.

In the well-known words of the English poet and cleric John Donne: “No man is an island… Any man’s death diminishes me, because I am involved in mankind.” Those of us who have been involved with suicide, either personally or professionally, know what a great tragedy it is. It is not something that we should legitimise. Although driven by desperation and hopelessness, the persone who commits suicide frequently hurts those who survive.

Dr Liam Fox, Conservative MP for North Somerset (Getty)

To commit suicide is to strike at the heart of what it means to live in community, for we are meant to be dependent on one another. The current legal prohibition on assisted suicide is part of the glue that binds our society together. Of course this does not mean that we just harden our hearts to those who are suffering desperately. True compassion points away from suicide and towards effective, skilled and respectful caring.

Doctors in the Netherlands who have experience of assisted suicide recognise that “failures” will occur from time to time. The Royal Dutch Medical Association recommends that a doctor be present when assisted suicide is performed (in the manner proposed in the Assisted Dying Bill), precisely so that euthanasia can be performed if necessary. I do not see this as an improvement to society. However well-meaning the proponents of the Assisted Dying Bill may be, they will open a Pandora’s Box which will change who we are and how we relate to one another in a fundamental and irreversible way.

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CEBID - Centro de Estudos em Biodireito

Sperm donation: Inside a deeply emotive world of powerful incentives, polarised views and heated debates

It was reported last week that the national sperm bank has only nine donors

• Kate Hilpern 
• Sunday 13 September 2015 16:19 BST

Mission accomplished: an illustration of the moment when a sperm cell gains entry to an egg Rex Features

Imagine discovering that your birth certificate is a lie and that your true biological father was a sperm donor who also fathered hundreds of other children. It’s a reality for more people than you might think.

Barry Stevens, who found out he was donor conceived (DC) when he was 18, discovered through DNA tests that his biological father, Bertold Wiesner, had up to 600 children. Wiesner founded the London Barton clinic in the 1940s, promising to provide sperm donors from “intelligent stock”, and there is evidence to suggest that around two-thirds of the children born to couples using this clinic were his.

In a similarly unsettling discovery, Jo Rose learnt that at the time of her donor conception, in the early 1970s, there was a small number of medical students from Barts NHS Trust – most of them now high-profile doctors – who donated sperm time and time again up and down Harley Street, essentially cornering the market.

“In my search for my own father, I met one of them and he said that this handful of men treated the clinics as a ‘w*** bank’, and estimated that he and each of his friends have between one and 300 children,” explains Rose. Add to this the estimated thousands of people in the UK who don’t even know they’re donor conceived (historically, clinics encouraged parents to keep it secret) and you start to see a disturbing picture.

Bertold Wiesner, who may have fathered up to 600 children (Rex)

The man from Barts admitted to being deeply troubled by the biological and moral consequences of his naïve choice to treat reproductive material as on par with blood to be donated (the more the merrier), says Rose, who has also suffered emotionally from the creepy discovery that she may have scores of half-siblings out there. “Before I met my partner, I used to worry I might wind up having a relationship with one of them unwittingly, as research shows people are likely to be attracted to someone they have some genetic commonality with,” she adds.

Since 2006, UK guidelines suggest that a maximum of 10 families should use sperm from the same donor. But there have already been six cases where donor sperm created more than 10 families, and the British Fertility Society is keen to “revaluate” the limit anyway. Moreover, sperm is regularly imported from abroad (notably America and Denmark, the so-called sperm capital of the world), meaning that many donor-conceived children are still growing up with an absurd numbers of siblings.

“Even under current UK guidelines, if one donor produces four children per family, that’s still a potential of 40 offspring per donor,” says Julia Feast, research and development consultant at the children’s charity CoramBAAF, who has a special interest in people’s right to access to information about their genetic origins.

Welcome to the world of sperm donation, where this is just one of many issues that stir up deep emotions, trigger polarised views, cause heated debates and lead to everything from heartfelt campaigning to downright foolish decision making. Powerful incentives are at stake here – women desperate to have babies, the fertility industry seeking big profits and many donor-conceived offspring claiming their basic human rights are being violated.

Last week, the subject hit headlines when it was reported that only nine men are registered as donors a year after the opening of Britain’s national sperm bank. For many who are hoping to conceive using donor sperm, the news will have felt devastating. Why the shortage, demanded journalists, and what can be done about it? Others, including Kamal Ahuja, managing director of the London Sperm Bank, were bemused by the news. “It’s fundamentally untrue that there’s a shortage of sperm. London Sperm Bank, which provides sperm to 26 private and NHS clinics, has an excess,” he says. (There are 50-odd “banks” in Britain, with a few hundred donors between them.)

And then there were those who were frankly relieved at the thought of a drop in sperm donor numbers, pointing to research such as the 2010 American study, “My Daddy’s Name is Donor”, which found that “young adults conceived through sperm donation are hurting more, are more confused and feel more isolated from their families”. The report continues, “They fare worse than their peers raised by biological families on important outcomes such as depression, delinquency and substance abuse.”

Laura Witjens, chief executive of the National Gamete Donation Trust (NGDT), a government-funded charitable body whose job it is to promote egg and sperm donation in the UK, has a more nuanced view. In fact, she says, there has been a rise in donor numbers over the years, but “it has failed to keep pace with the dramatic increase in demand for sperm, particularly from lesbian couples and single women”. Indeed, according to the Human Fertilisation and Embryology Authority (HFEA), between 2010 and 2011, there was a 24 per cent increase in the number of lesbian couples undergoing donor insemination. “Then there’s the fact that, whilst many clinics do have enough sperm, many NHS patients, particularly those in certain geographical areas, can face a waiting list of over a year – longer still, if they’re from an ethnic minority.”

Witjens – an egg donor herself, who was attracted to the industry after feeling, even as a young woman, that she’d have done “anything illegal, immoral or unethical to have children” – says the lack of equal access is the very reason the national sperm bank, of which she is also chief executive, was set up last year. Based at the Birmingham Women’s Hospital and funded by the Department of Health, its aim is to provide a central store of sperm for both private and NHS clinics so that they no longer have to buy from overseas and so that fewer women resort to alternatives (more of which later).

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CEBID - Centro de Estudos em Biodireito

Noticias / ACTAYS

La esperanza, en la terapia génica

Beatriz Sevilla OrtegaBeaSOrtega / Madrid

DÍA 15/09/2015 - 11.48H

La pequeña Isabel padecía Tay-Sachs, una enfermedad rara que aqueja a uno de cada 360.000 nacidos. Hoy su madre lidera una asociación para plantar cara a esta extraña dolencia

ABC

La directora de ACTAYS, Beatriz Fernández, junto a su hija Isabel

«Isabel dejó de hablar a los tres años. Nunca pude tener con ella una conversación en la que me contara cuáles eran sus sueños: si quería ir a Harvard, si estudiaría Medicina o si lo que realmente le apasionaba era jugar al tenis». Son palabras de Beatriz Fernández, una almeriense que perdió a su hija el año pasado. La pequeña Isabel sufría Tay-Sachs, una de esas dolencias raras o poco frecuentes en las que, cuenta, «cuando te dan el diagnóstico, te dan el pésame».

En concreto, Tay-Sachs es una enfermedad neurodegenerativa y de origen genético que afecta principalmente a bebés y niños. Se produce por la falta de hexosaminidasa A, una enzima cuya tarea es reciclar las toxinas que la actividad cerebral va dejando. Al fallar esa función, las toxinas se van acumulando en el cerebro y causan un daño irreversible. «Hay que ir respondiendo a las necesidades de cada niño, saber lo que va a suceder para anticiparse y poder proporcionar los mejores cuidados», señala el doctor Ricardo Martino, pediatra y coordinador de la Unidad de Cuidados Paliativos Pediátricos del Hospital Niño Jesús.

La persona afectada va perdiendo de forma progresiva todas sus facultades: «Va a tener epilepsia, problemas para comer y beber y pérdida progresiva de la movilidad», detalla el doctor Martino. No es de extrañar que estos niños sean totalmente dependientes de sus padres y tengan unacorta esperanza de vida: no suelen superar los 5 años de edad. Y es que, tal y como cuenta este pediatra, «la inmovilidad progresiva y la medicación que necesitan para no convulsionar contribuyen a que parezcan problemas respiratorios».

En la actualidad existen 13 casos detectados en España –el año pasado había 16, pero fallecieron tres–. En realidad, los expertos piensan que son muchos más. Pero se trata de una dolencia muy difícil de diagnosticar, especialmente en lo que los especialistas llaman «variantes tardías»; esto es, aquellos casos excepcionales en los que los afectados son adolescentes e incluso adultos.

«Por desgracia en este mundo nada es gratis. El Estado tiene unos presupuestos limitados y no puede investigar las 7.000

Sacar al mercado un medicamento que te van a comprar 13 personas no es rentable

enfermedades raras que existen», apunta Beatriz. Al otro costado de la investigación, el de la industria farmacéutica, invertir en Tay-Sachs también le resulta poco atractivo en términos comerciales. ¿La razón? La menciona sin morderse la lengua: «Sacar al mercado un medicamento súper caro que solo te van a comprar 13 personas no es rentable».

Economista especializada en áreas internacionales, Beatriz dejó su trabajo para dedicarse a cuidar de Isabel. Jamás perdió la costumbre de «mirar al exterior», y eso fue exactamente lo que hizo cuando los médicos le desvelaron la afección que aquejaba a su hija. Descubrió así que en Cambridge y Massachusetts existían sendos equipos de investigadores siguiendo la pista de Tay-Sachs y Sandhoff –su hermana gemela– a través de una posible terapia génica. Aún en fase experimental, esta terapia aspira a corregir el defecto genético en su origen: eliminaría los problemas de acumulación de toxinas, revertiría la falta enzimática de HEX-A y provocaría la reanudación de un desarrollo neurológico normal.

Beatriz decidió ponerse en contacto con Cambridge y fue precisamente una conversación con el líder de esta investigación, el profesor Timothy M. Cox, la que quedaría grabada en la mente de la almeriense. «Yo no creo en Dios, pero sí en los milagros. Y te prometo que voy a hacer lo imposible para que llegue un milagro algún día». Por aquel entonces, Beatriz ya era consciente de que difícilmente ese milagro llegaría a tiempo para Isabel. Pero eso no le impidió embarcarse en la aventura de fundar una asociación para combatir esta extraña dolencia. Un año después está volcada con ACTAYS (Acción y Cura para Tay-Sachs), que aspira a cubrir los «huecos» a los que el Estado no llega.

Beatriz Fernández, en la sede de ABC (Foto: Maya Balanya)

Unidades especializadas

En esta asociación «todos son voluntarios, incluida yo», constata. La ONG busca un voluntariado profesional donde «las posibilidades son infinitas»: una enfermera, un fotógrafo o alguien que sepa portugués y pueda traducir la web para que el paraguas de ACTAYS se extienda a Portugal y Brasil –dos países que no cuentan con una asociación especializada en Tay-Sachs pero sí con varios afectados entre su población–.

«En España tenemos un cuerpo médico excelente, pero existen más enfermedades raras que comunes y son tan poco prevalentes que es lógico que los médicos no las controlen todas», comenta la directora de la asociación. Tay-Sachs, sin ir más lejos, se da en uno de cada 360.000 nacidos. A este respecto, Beatriz quiere recordar la «buena suerte» que tienen quienes nacen en una ciudad grande como Madrid o Barcelona.

En la capital de España la unidad de Cuidados Paliativos Pediátricos del Niño Jesús realiza una «labor extraordinaria». Con el doctor Ricardo Martino a la cabeza, esta unidad funciona 24 horas los 365 días del año y ofrece incluso asistencia a domicilio. «Eso evita hospitalizaciones y otorga una gran seguridad: la de saber que, si descuelgas el teléfono, hay alguien que en 30 minutos está en tu casa», apunta Beatriz. Y es que «en un determinado momento, las complicaciones se multiplican y los intervalos libres de síntomas son cada vez más cortos», constata el doctor Martino. Quienes según la almeriense salen peor parados son aquellos afectados que residen en ciudades más pequeñas e incluso pueblos que «no disfrutan, ni de lejos, de las mismas atenciones».

El desafío actual

«Isabel ha tenido la mágica virtud de dejarme desprovista de miedos». Esta pequeña que en su breve existencia no pudo comentarle a su madre si deseaba estudiar en Harvard sí que dio a Beatriz importantes lecciones: «Me enseñó que todos tenemos nuestro lugar y que por insignificante que sea lo que tú puedes aportar al mundo, con que llegue a una persona ya merecerá la pena». El desafío actual, no solo de la directora de ACTAYS sino de todas las personas que hay detrás de estas siglas, pasa poraguardar pacientes ese «milagro» al que se refería el profesor Cox y volver la mirada al Estado para decir: «Oye, ¡que nosotros también importamos!»

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CEBID - Centro de Estudos em Biodireito

Los cuidados paliativosal final de la vida

Los cuidados paliativosal final de la vida

Estos cuidados pretenden conseguir el mayorbienestar posible para el paciente, y no sólo se ocupan de él sino también desu familia

Medicina de familia | 20/05/2014 - 12:11h | Última actualización: 21/05/2014 - 08:54h

 

Unidad paliativos Institut Català Oncologia de Barcelona Marc Arias- Archivo

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Barcelona (Redacción Vivirmejor.com).

- ¿Qué son los cuidados paliativos? ¿Quién los recibe y de qué forma se dan? A esto y mucho más da respuesta la Dra.Rosa Diez Cagigal, Médico Equipo Domicilario de Cuidados Paliativos área de Laredo (Cantabria) y Coordinadora Grupo de Trabajo Cuidados Paliativos SEMERGEN.

¿Los cuidados paliativos, una disciplina nueva?

Los cuidados paliativos, tal y como hoy en día les conocemos, nacen en 1967 cuando Cicely Saunders funda el St Christopher’s Hospice. Es ella la que tras años de acompañar, escuchar y registrar los resultados del control de síntomas en pacientes al final de la vida, sienta las bases y desarrolla toda una filosofía y unos principios de atención  (Movimiento Hospice).

Todo ello surge de hablar directamente con los enfermos y ver sus necesidades, que la llevan a querer crear lo más parecido a un hogar para ellos. Es con un paciente muy especial, David Tasma, enfermo de un cáncer inoperable y sin familia a su lado para acompañarle, con quien empieza a planear crear ese lugar (Hospice) en el que atender de forma integral a las personas enfermas que van a morir.

Se mantuvo la denominación de hospice porque reflejaba bien la idea de que lo que ella quiso crear, es decir, algo intermedio entre el hogar y el hospital para cuidar de los pacientes y sus familias. En Canadá en los años 70 es donde comienza a utilizarse al término “cuidados paliativos”,  que parece más apropiado para referirse a la filosofía del cuidado que se brinda a los pacientes al final de la vida, que  la de “hospice”,  que hace referencia más bien al lugar donde se administran los cuidados.

Tradicionalmente los médicos siempre hemos estado al lado de nuestros pacientes aunque no los pudiéramos curar, pero fruto del imparable avance tecnológico que ocurrió a partir de los años 50 del siglo XX parece que tanto los médicos como la sociedad fuimos olvidando que a veces la enfermedad no puede curarse. Desde entonces la muerte y el proceso de morir fueron desplazándose del domicilio al hospital.

Tanta tecnificación de la medicina hizo que muchas veces los médicos nos olvidáramos de cuidar, aliviar y consolar a nuestros pacientes. Así surgen los cuidados paliativos, que fusionan el modelo biológico con el modelo humanista en respuesta a las necesidades de los pacientes aquejados por una enfermedad en fase avanzada/terminal.   

¿En qué consisten los cuidados paliativos?

Cuando una enfermedad no se puede curar es cuando los médicos debemos plantearnos ofrecer cuidados al paciente y esos cuidados son lo que denominamos cuidados paliativos.

Así consideramos que una enfermedad  está en fase avanzada/terminal cuando se dan las siguientes circunstancias:

- la enfermedad avanza y no se puede curar
- el pronóstico de vida del enfermo es limitado
- la posibilidad de respuesta a los tratamientos específicos es muy escas
- va evolucionando de forma oscilante y con frecuentes crisis de necesidade
- causa un intenso impacto emocional en el paciente y en su famili
- produce importantes repercusiones sobre la estructura cuidador
- alta demanda y uso de recursos

Los cuidados paliativos no solo se ocupan del enfermo sino también de su familia, entendiendo a ambos como una unidad (paciente-familia). Cuando el paciente enferma es toda la unidad familiar la que enferma. Vemos que los pacientes se preocupan tanto o más por su familia que por los propios síntomas de su enfermedad. Muchas veces ven y expresan su preocupación por la sobrecarga de trabajo que están generando en sus familiares y esto también les hace sufrir.

El objetivo fundamental de los cuidados paliativos es conseguir el mayor bienestar posible para el paciente y su familia a través de la atención a las necesidades físicas, psicológicas, espirituales y sociales.Los pilares básicos en los que nos apoyamos los profesionales para conseguir este objetivo de bienestar son: el control  de los síntomas, la comunicación eficaz, el apoyo psicoemocional y la atención a la familia.

Los síntomas que con más frecuencia presentan los pacientes son: dolor, disnea, ansiedad, depresión, insomnio, anorexia, estreñimiento, nauseas, vómitos y síndrome confusional agudo.

Cicely Saunders definió el concepto de “Dolor total” que relaciona el grado de percepción y las dimensiones del dolor de los pacientes, además de con la enfermedad  con la presencia de los otros síntomas, y también con la soledad, el miedo, la falta de comunicación, el grado de ajuste emocional y de adaptación a la enfermedad y la dimensión espiritual (capacidad de búsqueda de sentido en la vida).

Los médicos vemos sufrir a nuestros pacientes, y así como para el dolor tenemos fármacos, para el sufrimiento tenemos nuestra presencia y la seguridad de que no serán abandonados. Esto ya va a producir un importante alivio en el paciente y en su familia.

Se inicia así un proceso de acompañamiento al final de la vida del que todos saldremos enriquecidos. Y es que ¿no es tan importante la labor médica de acompañar al paciente como la de tratar su dolor?

¿Sólo van dirigidos a pacientes con cáncer?

Aunque se han ido desarrollando en los enfermos de cáncer (oncológicos) en la actualidad hay una tendencia a extenderlos a todos los pacientes con enfermedades crónicas evolutivas no oncológicas en fase avanzada/ terminal, como las demencias, otros procesos neurodegenerativos y también a las insuficiencias de órgano: cardíaca, renal, hepática y respiratoria.

Además no debemos olvidar prestar también cuidados paliativos a los pacientes geriátricos y a los pediátricos que padezcan cualquier enfermedad que les lleve a esta situación avanzada /terminal.

En la fase avanzada de estas enfermedades crónicas los síntomas y las necesidades de los pacientes son muy similares a las de los pacientes oncológicos.   

¿Cuándo deben iniciarse?

Existe ya un amplio consenso de iniciar los cuidados paliativos cuando las necesidades de los pacientes así lo requieran ya que no son incompatibles con seguir con el tratamiento activo o específico de la enfermedad de base, incluidos la quimioterapia y la radioterapia. Así, aunque tradicionalmente se tenía en cuenta el pronóstico de vida del enfermo y solían iniciarse cuando se estimaba inferior a 6 meses, actualmente se considera que el inicio debe basarse más en las necesidades de atención y que en sus expectativas vitales.

Mayor dificultad encontramos para decidir cuándo iniciarlos en los pacientes no oncológicos, ya que el curso de las enfermedades crónicas es más imprevisible, con frecuentes reagudizaciones que dificultan enormemente tomar la decisión de hacer el tránsito de la fase de curación a la de paliación.

Como de lo que se trata es de aportar bienestar al enfermo y de aliviar su sufrimiento, lo ideal es que a medida que va empeorando su situación tengan más cabida los cuidados paliativos, pero pudiéndose siempre solapar los tratamientos curativos con los paliativos.

 Los cuidados paliativos y la atención primaria de salud

Los médicos de familia tenemos la oportunidad de enriquecer nuestra labor profesional en el contacto con el enfermo que está al final de la vida. Tradicionalmente se nos ha  conocido con la denominación de médicos de cabecera, por estar a pie de cama al lado del enfermo. En los momentos en que la tecnología y los fármacos ya no brindan al enfermo y a su familia el alivio del sufrimiento,  nuestra presencia, comprensión, cercanía y disponibilidad pueden ser un auténtico bálsamo para ellos.

¿Es posible morir bien en casa?

Sabemos que muchos de nuestros pacientes expresan su deseo de morir en casa, rodeados de sus seres queridos y en el lugar que podemos decir ha sido el escenario de su vida.Para morir bien en casa además de que el paciente quiera y se sienta seguro, es necesario contar con los cuidados de su familia y con el apoyo de un equipo profesional que maneje bien los síntomas que con más frecuencia se presentan al final de la vida.

El proceso de comunicación con el paciente y su familia se convierte en el elemento imprescindible a través del cual se establece la relación terapéutica y se entrena a la familia en los cuidados.En palabras de Cicely Saunders si nosotros como profesionales podemos ser capaces de ver la etapa que precede a la muerte como una época positiva, con un sentido que hay que descubrir, entonces los pacientes y sus familias encontrarán más fácil hacer lo mismo.    

Ser un médico cercano, empático y compasivo es lo que los enfermos y sus familias necesitan para poder enfrentarse a la dura pero enriquecedora experiencia de morir.A través de los cuidados paliativos la humanización de la medicina puede ser de nuevo una realidad. 

Más información en: www.semergen.es

La información proporcionada ha sido planteada para apoyar, no reemplazar, la relación directa que existe los pacientes/visitantes de este sitio web y su médico. Si tiene problemas de salud, consulte a su médico.

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CEBID - Centro de Estudos em Biodireito