Hospice as an art: how a high complexity patient differs from a low complexity one

Lida Moniava, Deputy Director of the Children's Hospice "House with a Lighthouse"

One official came to our hospice and said that in the hospital he had seen "high complexity" children, but we have "low complexity" children in the hospice. Indeed, the same children in the hospital and in the hospice will look different. I want to tell you about this difference.

What does a “high complexity” patient look like? He lies in bed, all in tubes and instruments, naked, his hands are tied (so as not to pull the tubes out), the instruments squeak alarmingly, numbers with heart and respiration indicators are jumping on the screen. To approach him, you need to put on a dressing gown-mask-cap, treat your hands with alcohol, relatives are allowed one by one and for a short time, grandparents, brothers-sisters are not allowed. It is better to touch "high complexity" children less, not to move, they need round-the-clock medical supervision.

But patients in an acute condition should be considered severe - the first days after an operation or an accident, for example. When there is a struggle for life, for improvement, when medicine can really do something to save, cure. This is a short period of time after which either crisis rehabilitation or palliative care comes. You cannot lie with a serious patient for six months - this means that no one simply dares to talk about palliative care and hush up the topic.

When we talk about palliative care, it means that the condition, albeit very difficult, will be so difficult for a while. Several months or several years, or even tens of years. And then you have to think about how to spend this time as good as possible? Leaving a person naked in bed and in tubes is as easy as shelling pears. But is this life? Not.

Much more difficult is real art - what our hospice does. We take children from the hospital, naked, in tubes, lying. We take out the tubes and transfer the children to non-invasive devices. Easily insert a tube into your child's throat and connect to a large, fixed ventilator. The harder part is to take out the tube, replace it with a small silicone nose mask and pick up a portable small ventilator with which you can walk and swim in the pool.

It is easy to insert a plastic tube, probe into the child's nose. It costs 3 rubles. It is more difficult to buy for 15 thousand a small gastrostomy button, a tiny silicone tube in the stomach that no one will see under a T-shirt.

Just keep the kids naked in bed. It is difficult to choose clothes for them (to sew them individually so that they have access to the gastrostomy or fit onto the orthosis). It is easy to keep the child in bed - it is difficult to find an individual wheelchair for him. It is easy to tell parents not to touch the child - it is more difficult to teach them to care for their “high complexity” child. It is easy to connect to the sensors and monitor the indicators (you are like busy doing something important and everything is under control) - it is difficult to remove the sensors and NOT monitor the indicators.

We had an argument with one boarding school. I said - let's take your palliative children to our day center? They will swim there in the pool, study with teachers. In the boarding school they answered - a great idea, let's just how to transport them - you need medical escort, you need a special car, a paramedic, a license for medical services on the road and portable medical equipment. We didn't manage to organize all this, the guys never came to our day center. Until we took them from the orphanage home to the hospice staff. And then it turned out that they did not need medical assistance, that they could travel around the city by metro and buses.

It's one thing you come and see - a naked child is lying in bed - it is clear that it is “high complexity” patient. Or you come - and the child is all in fashionable clothes, sits in a cool stroller, in sunglasses, rides the subway. Not so hard anymore?

In general, if you see someone lying naked in bed and with sensors, it is possible that they simply did not think to dress the person, did not find money for a stroller to take out of bed, did not dare to remove the sensors. It is easy to hold people for high complexity patients. Making children hang out in the playroom, outdoors, in the pool and look like ordinary children is much more difficult.

The medical approach is when everyone is seriously ill and needs medical supervision. A social approach is when it's time for everyone to go to school and it's easier to get there by metro.

Original is here.