“You treat a disease, you win, you lose. You treat a person, I’ll guarantee you’ll win.” (Patch Adams)
Today could be a good day. It’s Sunday. The sun is shining. It’s warm outside and spring is turning into summer.
I just read a few short articles about what physicians consider to be the difference between curing and healing. I am trying to find out more about this topic after one health care professional told me that in England, doctors are (or were?) not allowed to work with patients who they could not cure. One of the world’s best known neuro hospitals was founded originally as the hospital for the incurables – it is now known as the Royal Hospital for Neuro-disabilities, in Putney, London. When we talked and listened to health care executives in Ireland over the past months, they were making the argument that patients with severe or very severe acquired brain injuries were very costly to look after. In circumstances were health budgets have been cut every year, the remaining funds had to be allocated very carefully, these executives said. They concluded, that it was those who had the best chances of recovery had to be looked after first. In other words, and these are mine, there is no funding to look after the ‘incurables’ other than being put into ‘maintenance’, meaning inadequate and damaging maintenance in acute hospitals or nursing homes.
Today, Pádraig frightened us. He had vomited yesterday and this afternoon it looked like as if that had caused him some problems, together with the heat up in his room. We could watch his temperature going up. His heart beat frequently went above 120, even 130. There were loads of secretions making it difficult for him to keep good oxygen levels. There is a big blister on his left foot, the side with the thrombosis where he is wearing a ‘custom made’ stocking. There was nothing really critical about the situation, but since he had been so stable physically over the past weeks if not months, we were all very worried, including the staff and doctors. They took several samples and got them into a lab so that we would have the results tomorrow. Pádraig was really struggling. We were hugging him to make him feel more comfortable, to let him know that we were with him and that there was no reason to be afraid. There is a slight chance of pneumonia caused by some ‘aspiration’ when he vomited, i.e. vomit getting into his lungs. In this case, he will be put straight away on a powerful antibiotic…
Here is my proposal: Let’s nick something that by now has been proven to work. From the Germans (they deserve it). It’s the idea that even (!) severely brain injured patients have a right to adequate and timely care – anything else is “unethical” and “grotesque” – that’s what German consultants said when they heard that Pádraig was to be ‘kept’ in an acute hospital in Ireland most likely for longer than a year. I will learn how these patients should best be looked after, and I will work with our Irish friends to start a small and viable investment in people who most need our help. Our “return” on that investment will be their and their family’s well being, them being healed even if not being cured. We will need loads of volunteers and supporters to make this happen: everywhere. In the HSE, in the Department of Health, amongst health professionals, designers, architects, trades people, land owners, bloggers, letter writers.
I had a long discussion today with a good friend about ethics. About what is right and what is wrong. This is the right thing to do (even if it involves nicking something from the Germans). Writing all this down and committing to it does make this a good day, with the sun shining straight into my heart and mind! Bring on the summer.
Today’s German Music Tip
Die Prinzen, Alles Nur Geklaut (1993) – It’s not always a bad thing to nick something. And if you thought Conchita Wurst was the first woman with a beard singing on stage, watch the video for ‘Alles nur Geklaut’ (All just nicked).
What’s hot
To nick ideas (if they’re worth it)
What’s cold
Staying still (that’s never worth it)
The German word/phrase/verse of the day
Klauen
Animos, besos y abrazos
Now someone will need to tell us what ‘ánimos’ means in Irish… spreagadh? (and then how to pronounce it:)
The “Pádraig S(c)häler Clinic” for Early Neuro-Rehab, Ireland?
A stressful few days for Padraig now.. Tell him there are 53,800 people feeling concern for him, hoping he gets through this difficulty ok. Our prayers continue for him.
Seos
Thank you, Seos. – There have been and there will be set backs like yesterday’s. I am sure that he will quickly get over it. Let’s hope for the best. – Reinhard
New moon this Wednesday! New start!
I like the name of our, first of its kind clinic in Ireland :THE PADRAIG SCHALER CLINIC. Well done Seos! It has a ring to it, as if it already exists!!!
I think it does, Christine, you are right! Whatever you really want to do is possible. And that this facility is missing in Ireland is so OBVIOUS, isn’t it? – Reinhard
Your commitment is fantastic, Reinhard. I do hope there will be enough people to finance the project in the long run.
One may wonder why we Germans don’t cut our health budget when it comes to severely injured and costly patients like Pádraig. It has do do with our horrible past and the atrocious crime that came with it, in this case euthanasia and the deliberate killing of the mentally disabled who were not considered useful for society. This is probably the reason why discussions about stopping to pay for costly patients can’t be won in this country. We have realised that it is unethical to simply forget about the most vulnerable citizens and by doing so to let them suffer more or even kill them.
All this is in the back (and, at times, in the front) of my mind, Gisela. When I hear health ‘professionals’ talking about the now historic clinics for the ‘incurables’, but see that the approach is still around (no doctors neither needed nor allowed, because doctors should only ‘cure’); when I hear health ‘professionals’ talking about ‘return on investment’ and limited health budgets to be spent on those who promise the highest financial return (not too far away from those who, in times past, promoted the elimination of ‘waste’ in our country’s national health system); it makes my blood boil. Historical comparisons are tricky and polarise (did you hear that Prince Charles compared Putin’s policy in relation to Crimea to that of Hitler just before the Second World War?), but you can’t just ignore them either. There is a tendency today, especially in Irish politics and the Irish mainstream media, to reduce almost everything to the economy: Universities become a ‘University of Enterprise’; exciting and mind-blowing events become relevant only because they generate more revenue to the tourism sector (like the Dublin Web Summit; they ignored the ‘Oireachtas’ that took place in Killarney around the same time almost completely, although it attracted thousands of people too); healthcare decisions are not taken on the basis of need and the ethical obligations by society to support those most in need (but on the basis of financial returns).
So there is something very practical and pragmatic to do here (put that clinic in place). At the same time, I would hope that an energetic and thoroughly positive demonstration of solidarity, compassion, and commitment to patients – even, and especially, to those with severe brain injuries, the “incurables” and “bad investment cases” – by the people will have an effect on politicians and the media, and make them consider what our priorities as a society, not just as an economy, should be.
it would be such a good Idea!!!
Sorry to hear that Pádraig was not doing so well yesterday and please God he will get through this difficult set back.
Keep on writing your blog Reinhard. It’s so inspirational and I feel that you are on the road to something BIG.
Maybe you could get the Schön Klinik to set up a clinic in Ireland? Imagine how wonderful it would be for Irish patients to have access to world class treatment in their own country.
All the best to you and your family.
Shirley
Thank you, Shirley, for your nice comment. Patients, even and especially with severe acquired brain injury, will be able to access timely and adequate care and therapy in Ireland. It might take a bit of time, but they will – I think there are enough people around who will make sure that this issue is not going to go away!
Yes, it is the right thing to do. You have a nice saoul…
Thank you, Marianne. So it looks like we’ve got some work to do! The kind of work that wants you to get up in the morning full of motivation and energy!