Places of care Articles

Unusual healthcare spaces

When the way of acting creates the medicine we want. Giving space and voice to the values of the person

Giuseppe Naretto

Manager Hospital Palliative Care Service, Turin LHA (Local Health Authority)

By May 2020July 17th, 2020No Comments

Shutting the large gate behind me turns off all the street noise. Via Nizza, with the rattling of the tram, the pounding puff of the machineries repairing the asphalt, the liberating roar of the cars taking Corso Marconi without the reins of the traffic lights, all disappear in a dull thud. The entrance hall is dark and cold. The light filters through a small window that opens in a porter’s lodge. It’s almost without furniture, illuminated by a neon light hanging from the ceiling. Before I manage to approach the entrance, reception and look for the porter a nun appears from a dark corner.

“Are you the doctor?” she asks with an unyielding tone that does not admit any other answer but yes. Without really listening to me she presses on: “You’re late. We were expecting you at eight thirty.”

“I apologise, there was quite a lot of traffic and I could not find anywhere to park.”

“It doesn’t matter. We’re not in a rush. Here.”

When speaking these words her tone of voice slips into a soft sadness, or resignation, but endowed with a deep, ancient force, as if sustained by the long hours spent contemplating the divine mysteries.

“I will take you to Father Livio” she says, turning away without really bothering to check whether I’m following her or not. We set off in silence and after a series of turns, steps and service doors we reach a massive corridor. The ceiling is poorly lit, but you can catch a glimpse of the vault adorned with stuccos, and perhaps frescoes. The wall on my right is cluttered with nineteenth century paintings. Five doors made of oak (or walnut?) appear on the wall on my left, ten steps from each other, dark and decorated with bas-reliefs. One is open and the light of the winter sun that filters through it brings out the black and white checkerboard pattern of the flooring.

The nun’s pace is slow. I have time to look around. A comment escapes me: “It’s beautiful”, even though that’s not the exact impression the view gives me. There’s a sense of disorientation: it feels like I travelled in time and the idea makes me excited.

“Indeed” she retorts without shifting her gaze. “A gift to King Carlo Alberto to the Daughters of Charity.”

It seems like the introduction to a quick guided tour, but the nun remains silent as we parade in front of the gigantic paintings, the yellowed photographic prints of Porta Nuova and the bezels decorated with what seems like biblical scenes. Once we reach the entrance hall of a large staircase we head towards a recess where an elevator (old and not at all beautiful) takes us to the upper floor. The nun explains to me that on the first floor there is a “ward”. What used to be simple bedrooms hosting the religious elderly has now been transformed into a real care home. It’s not a hospital, but it’s almost getting there, with its nurses, doctors, the trolleys full of medicines, drips hanging from the beds and oxygen gurgling from the walls. Ageing has become an illness and the loving care from the Daughters of Charity does not seem to suffice any longer.

If science is the one investigating the cause-effect relationship, what is the discipline that can deal with “meaning” and “values”?

I think about my decision to transfer from intensive care to palliative care: a mix of tiredness and curiosity. Does a better treatment necessarily mean more technology? What happens to those who survive but do not go back to their previous lifestyle? If science is the one investigating the cause-effect relationship, what is the discipline that can deal with “meaning” and “values”? Why do we end up there whenever treatments don’t work (and that happens in almost 20% of the cases, not just a few)? Is dying always so wrong? Or are there conditions that are worse than death?

I open Father Livio’s medical record thinking about my set of questions, unsure whether to expect an existing answer/solution, one I should simply stick to, but also aware that medicine is often work in progress and sometimes the experience that comes from practice creates the medicine we were looking for in the first place.

I then decide to dedicate little time to written records, even less to numbers, and I head to my patient’s bed, knowing almost nothing about him aside from a few words about a diagnosis without hope.

The bedroom is a single room and he is sat on a wheelchair beside the window. He is waiting for me. He is minute, fragile looking, more so due to old age than the illness, with a few unkempt white hair and a wrinkly face. Bright eyed and with an attentive gaze, his mouth curls into a melancholic smile that immediately breaks into a greeting. I introduce myself and then ask my usual question:

“How are we feeling today?”

I sense it’s not the right one. He looks up and his eyebrows express a clear “Not so well…” he leans on the armrests trying to change position, wincing in pain. I try to engage him around that:

“Are you in pain?”

“A bit in my back.”

“How come?”

“Well, it’s the position.”

Of course, this speaks for itself: it is not the illness, the tumour or the bone metastasis…but it is “the position”. I don’t say anything about that but given he doesn’t use my silence to add anything else I keep on investigating:

“I did not have the chance to read all your medical records. Would you like to give me an overview of the main points?”

“All right, everything started in 2010 when I had a stroke…”

Oh, hell. The stroke does not really have anything to do with what he has here. We’re talking about a bladder tumour detected in 2018, with bone metastasis and infiltration to the colon and peritoneum. Why are we talking about stuff that happened ten years before and that is not connected to the current situation? The ICU worker inside me is fretting and wants to get to the point.

What is the point though?

That there is no treatment left.

So what?

I realise that whenever science stops and says, “There’s nothing left to do”, the patient still has a long road ahead. A few weeks, a few months, they’re surely not much compared to a lifetime, but moments, minutes and hours add up to a considerable length of time, that one must live through anyway. Someone should take that on. A bit of positive medicine would certainly help. Good control of the pain, nausea, constipation, anxiety and dyspnoea is essential. Drugs play their role, but that’s not enough. It takes more. I think about a form of existentialist medicine that investigates the meaning of illnesses rather than their biologic mechanism only; but here my knowledge becomes sloppy and not organic at all.

Meanwhile father Livio’s account flows smoothly, with a few breaks that slow down the main plot, but in a few minutes, we get to the last oncologic visit, where the “pain” is eventually called “tumour” and therapies become “unnecessary” or “useless”; his story terminates here. I also realise that perhaps there isn’t much left to say but it’s from this point onward that, in most cases, my work begins, so I’m not completely unprepared:

“When I asked you to tell me about your health issues you began from a long way off, in 2010, when you suffered a stroke. What do these two illnesses, the stroke and the tumour, have in common?”

“They happened one after the other and they both turned my life upside down.”

“How did they turn your life upside down?”

“After the stroke I stopped saying Mass.”

“What about after the tumour?”

Father Livio is quiet. He seems to reflect on something, then his tiny body collapses in a burst of gasps and he murmurs in a whisper:

“I’m not able to pray anymore.”

I get closer, put my hand on his arm and wait for him to calm down.

“I can’t stop thinking about my pain. I know it’s a body pain, and I would like to ignore it and detach myself from it properly. My whole life was dedicated to prayer and the nourishment of the soul, and now I find myself in a body that’s taken over everything else. All this physical matter gets the better of me and stops me from praying. There is no thought that gives me more torment or suffering.”

Father Livio’s words are more evocative than any CT scan or histological exam; they convey all the anguish and desperation of a person that cannot live his life coherently anymore. At the same time, I feel I got hold of the problem: my patient is not asking me to treat his tumour, save him from death or to prolong his life as much as possible. He’s asking me to help him get back to praying again. It’s not an impossible task; I just need to think of something.

I return to a more familiar ground and mentally following the questions from one of the many questionnaires for palliative care patients I manage to identify a few issues that can be improved changing the therapy, thus relieving the symptoms of such an overpowering body. I also try to make a few ordinary suggestions on diet and exercise, and after taking notes of everything I get ready to leave. Suddenly my eye falls on the small Bible placed on the bedside table:

“Do you use this to pray?”

“I do, even though I just read it now, without really reflecting on it the way I would like to.”

“What were you reading?”

“The book of Jonah.”

My face doesn’t light up, so he carries on:

“The Lord commands Jonah to go and preach in Nineveh but Jonah flees on a ship to Tarshish instead. Hit by a thunderstorm, the ship is almost about to sink due to the violence of the waves. Jonah suddenly finds his courage again and reveals to his travel companions that he’s to blame for the divine wrath as he refused to obey the Lord. Then Jonah is thrown at sea but a ‘big fish’ swallows him. From the belly of the fish Jonah addresses God in an intense prayer. So, under divine command, the fish vomits Jonah on the beach.”

“I get it,” I say, “You are Jonah who refuses God’s plans, right?”

He does not reply but smiles embarrassed.

“What about the big fish? Wasn’t it a whale?”

“The Bible doesn’t say.”

Suddenly I get an idea. The one idea I was waiting to get so I could offer him more practical help.

“Do you feel like playing a game with me?” I ask, perhaps a bit too excited.

“Where?”

“Inside the whale.”

I push his wheelchair out of the ward. We enter the elevator and I press the button that takes us to the ground floor. We pass by the stairwell and here we are: the immense corridor unfolds before us with the majesty of a temple; the lights filter only from one side and from the bottom; the stuccos, the paintings and the ornaments. We stop right in the middle, enveloped in a half-light of chiaroscuro that’s almost tangible. I see Father Livio turning around, astonished and overwhelmed by such sumptuousness that he certainly no longer remembered. Then, after a few moments of silence, he asks:

“Let’s stop there for a bit, close to that small altar”.

After settling his wheelchair in the right spot, I sit beside him, on the floor, leaning on a column.

“Can you spend a few more minutes here with me?”

“Of course” I reply, feeling like I just discovered who knows what new cure.

I realise that whenever science stops and says, “There’s nothing left to do”, the patient still has a long road ahead.

Leave a Reply