"Beer for the Dying through a Straw"

On December 11, as part of the Artdocfest festival, the Russian premiere of I'm breathing (Scotland-Denmark, 2012, Emma Davey, Morag McKinnon) took place. In 2013, on the same day, the film will be released on the screens of the whole world. This day is declared the day of the fight against Charcot's disease (amyotrophic lateral sclerosis)

I watch any movie about illness as a help guide. The film I Breathe is a great textbook. I looked and thought that what I saw could or could not be applied in our hospice.

Neil, the terminally ill hero of the film, has a ventilator at home. The budget does not provide such devices, our fund has been able to buy only two devices for the amount of more than 1.5 million rubles, and these are devices where the breathing circuit goes into the mouth, not the nose. The mouth is occupied by a tube that cannot be pulled out, the patient in full consciousness cannot speak, and nutrition is supplied through a tube that passes through the nose. Terrible. I want us to have such ventilators as in the movie, where the tube goes to the nose.

I saw an amazing lift chair for bedridden patients. A special microphone for recording in a computer that converts words into text. A special chair is positioned so that Neil can see the street and his son on the swing while sitting in it. In our hospice, the lawns are slanted so that lying on the bed you can see the grass, not the fence. But floor-to-ceiling French windows are a dream that will have to be realized in a children's hospice.

Neil drinks beer from a bottle with a straw with his friends. In our hospice, patients can smoke, we are not afraid to offer vodka to drinkers - in the last weeks of life, bad habits do no harm, only a good mood. But we've never offered beer to young patients just as a drink to get along with friends. Beer through a straw - take note.

Neil has his one-year-old son in his arms all the time. We don't let children into hospitals. Children come to the hospice, but we are also afraid to put them on the bed, they say, they can hurt. We forget how much such a touch brings joy.

Neal discusses his funeral with his wife and mom. He wants to be sure that everything will go the way he wants. Our relatives weave laces of lies around their loved ones, do not pronounce the words “cancer” and “hospice”, although patients always know more about their condition than their relatives, they just play along with them. But how much calmer many would feel if they could discuss all the details in advance. We need to work more with relatives.

Neal said that the most important thing for him is freedom of communication. This is what we always talk about in the hospice: the main thing is that until the last day the patients feel that they are independent and that they make the maximum decisions themselves, and not the medical staff.