What will death look like most often in Latvia in 2023?

Death, like birth, is probably different for everyone. It is difficult to calculate everything that is involved in the processes of life - each experience will be very individual. But the question is, of course, like a nail on the head. It should probably start with the fact that we do not have a nationally regulated service that is accessible to all Latvian citizens. We have not had such a service for 33 years, and nothing has been done since Latvia declared independence. Except for our pilot project, where both dying people and their relatives had the opportunity to understand what a dignified death is, where support is provided in absolutely all necessary areas, which are social, medical and spiritual care. Now another pilot project has emerged, provided by a different service provider. How they are doing is for them to ask, but I think it is very difficult, because the package they have developed did not include medical staff at all - doctor, nurses, nursing assistants. In this service, the medical care of a dying person has to be organised through the family doctor. We probably all know how overburdened GPs are in our country.

But this is also a pilot project.

This is also a pilot project. It's a drop in the ocean. We had 136 clients who could receive our service during the pilot. The procurement documents foresaw 250 people during this year. But this is really a drop in the ocean, because about 28 000 people die in Latvia every year. Of course, there are quick deaths, we would all like that. I remember reading Paul Bragg's book on starvation when I was young, and he died at the age of 80, surfing into the sunset. It is probably rare for any of us. We still get calls, people sharing their experiences and what we hear is very crazy.

What is "very crazy"?

That there is no support.

What does it look like?

It looks like, for example, a person is admitted to hospital. The hospital, quite understandably, has its own rules and regulations. There, the patient's condition is stabilised, acute, urgent health issues are dealt with, investigations are carried out, treatment is given. The rest of the time, the person does not have to be there. Palliative care units are not meant for people to die in, there is no separate place where the body of a deceased person can be respectfully placed. Dying can be a long process. Most often it happens at night or in the early morning. There is no place where relatives can be present to hold the hand of the dying person for, say, 5 hours. There is no such possibility.

In fact, people die alone.

Yes. There are hospitals with single rooms, but there are also hospitals with several patients - two, three and four - in a ward. And then there is the question of the impact of the dying process on the others. In general, there are a lot of dignity issues. In every detail. For example, body hygiene - how does it work? A person is already worried about having a terminal illness, the whole world is falling on top of him, and then he has to worry about washing himself, so that he does not lose his self-respect. How to do that in a dignified way - in a separate room or even with a screen in front. It is not impossible. It is not necessary to buy equipment costing millions. It is a question of organisation and time.

When an incurable disease runs its progressive course, the doctor discharges the patient home. The hospital's responsibility ends there. The question then becomes whether the person has a home to go to at that point and sleep in.

And does he have someone to look after him?

Exactly. How will he get there, by what transport?

A dying person is helpless.

Of course. If a dying person cannot make decisions for himself, he is subject to huge discrimination. Who will make those decisions for him? What will be the way forward from hospital? Does he have a support system at home, meaning a decent home, someone who can provide care. It is extremely difficult to care for someone who is sleeping, it is physically demanding - washing, brushing teeth, the whole routine. A person with oncology tends to have bleeding, shortness of breath, anxiety attacks. How can a relative, perhaps a lawyer, an accountant or a driver, who has no specific knowledge, how can they help?

So, in such a situation, would you need a medically trained carer 24 hours a day?

Not always. That is why we stress the need for hospice care at home and the need for hospice care in hospital. Hospice care is needed for people who are unable to receive care at home. The person may live in the deep countryside, or even here in the city on the 5th floor without central heating, sleeping on a 20-year-old sofa. It is not possible to provide full care in these circumstances. Hospice care is comparable to family care. There are medics there, but the patient's family can also be there for them. At the moment, the answer we are getting from officials is that hospitals have beds for chronic patients. But if we look at what patients are entitled to in this service, it does not correspond at all to what a dying person needs.

When a person is discharged from hospital, they return to the care of their GP. If there are relatives who could take over care, they have to make an unenviable decision at this point - whether they will leave their job or have an employer who will put them on leave for an unknown period, because no one knows exactly how long the care will be needed - it will be a week, three weeks or eight weeks.

People who cannot be cared for at home or who have a very serious illness need a hospice as a hospital where everyone understands what is happening, where medical support, a chaplain and a psychologist are available. There is also the possibility of support in this difficult moment, no one has to die in agony.

However, not all will require 24-hour medical supervision. Hospice care at home also includes visits by a nurse if needed and pain medication. They also check that the person is not taking the wrong combinations of medicines and causing more harm. If the person has a relative who can stay with them, the Hospice staff tell them how everything is going to work, so they are informed about all the stages of the agony of death. This knowledge allows both the dying person and the carer to feel more at ease. If the person is relaxed, not anxious, has someone nearby who holds their hand, helps and knows what to do, then there is no need for a medic in the process.

What does it mean to die with dignity?

It is death without pain and loneliness. We should all begin to see it as a social and individual good, a good result to achieve. I do not want to take away the tragedy of death, of course it is tragic, but if it happens in an orderly way - without pain, without anxiety, where everyone around you is informed, where all possible support is given, that is a good thing to strive for.

I have thought a lot about why there is such neglect and reluctance to speak up in our society. There are still a few people in my circle of friends who are afraid to say the word Death. We know that Latvians are very superstitious.

Death is still a highly stigmatised topic in society.

Yes, and that's why there is an organisation like us that is not afraid of the word. We talk about it, because nothing is solved without talking.

That is one thing, and the other is that it will befall us all, no matter how much we avoid talking about it.

Yes, and if some of us are lucky enough not to get serious illnesses, that will be good luck, but death will come to us all. Most people have not thought about this. There are some strange ideas that we see in films that do not correspond to any reality.

Need to prepare for death?

I think it's such a big event that... I don't know if you can even understand it. I think it can only be understood when it happens or when it is coming. It would be quite irresponsible if I started now to say some sentences that I have read in books. It is something so... Something even more incomprehensible than the birth of a child.

As I was preparing to talk to you, I was wondering how deeply it is possible to grasp our mortality and live with that feeling. Obviously, I don't think about the fact that I will die at some point in my daily life.

At some level, we can understand that. On a technical level. In the second level of the volunteer training course, Dr Kļava talks about preparing for death, about what preparatory procedures we can carry out. He refers to various books and says that the human mind is built in such a way that if you have already thought and accepted this thought in meditation, if you have seen the light on the other side, then when it actually happens, your brain will work in this way and you will go that way. Of course, this is very, very simplified, what I am saying now, in Dr. Kļava's lectures there is much more complete information about it, that is how I understood it. But I think it takes a lot of courage to prepare for it in such a conscious way.

How is it that a small group of volunteers with two Ilze (Founders of the Hospice - Ilze Neimane - Nespora and Ilze Zosule) at the forefront, but there is still a lot of ignorance at government level, and we are once again last in Europe because we do not have state-funded Hospice care?

For me, it was such a vivid view from the outside when we were awarded the European Citizens' Prize and went to Brussels. There were different projects from each Member State - on the environment, the elderly, equality, support for Ukrainians, etc. And our project - Hospice Care. The other participants were quite puzzled - what was so heroic about it? In all developed countries it is a normal publicly funded service. For them it is something completely natural, not extraordinary. Unfortunately, I had to explain to them that we have to fight for this and that it is perceived as a heroic act when it should not be a heroic act, it should be a normal, accessible service.

However, I would like to ask - what is all this for? You have a very good, lucrative job. How did you get the idea to start dealing with other people's deaths?

The idea developed. I think that's what Mark Zuckerberg said, that ideas don't come ready and developed. In the beginning there is the germ of an idea. But with human capacity and willpower you can do a lot. Ilze (Ilze Neimane- Neshpora) it developed through personal experiences and a different way of seeing the world. The subject was already close to her heart. I was, however ridiculous it may be, impressed by reading one book. Atul Gawande's Being Mortal. A small book about Hospice in America, several life stories from the point of view of a dying person. How every week these people lose more and more of the opportunities they used to take for granted - one day they can no longer concentrate to write a message on their phone, the next they can no longer dress themselves or lace up their shoes. This book had a huge impact on me. I began to wonder how it would happen to me. All those people believed in the ability to work and the willpower that had been taken away from them. Where did I get the arrogance that it was not going to happen to me?

Since Ilse and I do a lot of things together, we started to look around the world and talk to specialists. We gathered a working group here. Ilse and I also did our own volunteer training and were quite active in going to hospitals, seeing what the situation was like in the palliative wards and the condition of the people who were there. In hospital you can see the real, unimagined life. For a person facing a terminal diagnosis, there is already enough to think about. If she still has to face disrespect and injustice, that is terrible.

Hospice is not new. It is a very well-functioning programme in the world, separate from social care. Why do we want to lump everything together again here, instead of taking the good example that has long been set everywhere else, including in Lithuania and Estonia?

I don't know how to answer that.

What are the answers you get?

The answer we get is that social care as a service already exists. We say - there is no medic. We are told there is a GP.

No one is saying that the idea of a hospice is wrong. No one has yet dared to say that a dying person does not need a team with all three specialities at the same time. But if he has called on Monday, he needs to be seen on Tuesday at the latest, not next Friday. We have had many cases where the person has been in our care for the last three days. And in those days he has been washed, cared for, listened to, been in contact with his family, been refreshed, and no one has disturbed him. The family has also been told what is happening. There are no calls to the NMPD, which usually ends with the person dying in the ambulance or in the hospital corridor. These issues need to be looked into, they need to be talked about. It is the same as raising children. In my childhood, it was common to talk to children like this - what are you doing here, you little snot, go and work, then you will see how a good person will grow out of you, or - stand quietly when the big ones are talking. What are you fantasising about? Shut your mouth, go into your room and close the door behind you. At that time, it seemed that this was the only way to grow those hard writings. Now life is showing that this is not the case, and many people have to change their thinking about bringing up children, about respect for children. The Children's Fund seems to have been talking about this for 20 years, and we can see that, slowly but surely, attitudes towards these issues are changing in society. I hope that we will not have to talk for 20 years.

I very much hope so. You also touched on a topical issue, such as the family and relatives of the deceased. Because it is not just about the dying person, there are also relatives who have to live on. I understand that the hospice also includes support for the relatives in its programme, not only with the explanatory section on what death looks like, but also the emotional one, because that is what mourning is all about.

It is mourning, and it often starts as soon as loved ones learn of the imminence. Often the person is buried sooner than it actually happens. The manifestations of grief are very varied and someone needs to recognise them and be able to help. In our experience, we have had people who have cared for a dying relative for a long time and have simply broken down mentally, becoming mentally disabled after these experiences.

Not everyone can take on such care.

Exactly, not everyone can. It may be that you don't cope, and that's perfectly normal. We do not need to lose two people. That is why support and explanatory work are vital.

I know that you have had patients among your clients who were looked after by adolescent children, and that is mind-boggling.

Teenagers, yes. It's mind-blowing. During the first volunteer course, Dr Sosar told us about a case where a woman in his ward was already terminal and had to be discharged from hospital. She lived somewhere in the countryside and had two sons aged 15 and 16. The boys did not want to put their mother in any nursing home, came to the doctor and said they would manage and look after themselves. The doctor taught the boys how to pinch and bandage, taught them how to water their mother properly so that she would not choke. When Dr Sosar was telling us this, he had tears in his eyes, and needless to say, we were all crying too. After a while, the boys called to say that Mum had died. The doctor asked them to come to the ward so that he could shake hands with both of them. The boys, 15 and 16 years old.

The question is what happens to these boys afterwards, to their mental health.

Yes, this story also flashed through me like lightning. The cards of life can turn out in the most unimaginable ways. I don't know if people ever think about who their support will be - who will wash them, look after them and clean them. Who will deal with their moans, aggression, anger and inability to reconcile when they want to throw everything up in the air, and throw it already. And if it is not explained to the loved one that it is the illness that is speaking through that person, then it can seem - oh, you ungrateful one, my family is already broken up while I am looking after you. People who are seriously ill tend to have a lot of anxiety because there are a lot of unanswered questions and that can come with aggression. There is a medical explanation for all this.

However, I very much hope that our country will also grow up to be a hospice.

It is also our dream. It is even easier to understand, to visualise. We have seen such hospitals elsewhere in the world. There you can see that, despite the gravity of the event, it is possible to accompany a person with warmth, light, compassion and dignity. And then to support the bereaved family. People need that. So often the bereaved have to hear all these - hang in there, my friend, life goes on, you have been here too long, etc. And often it is uncomfortable to mourn, one gets over it, but inwardly one has not gone through the process, and it turns out that mourning also has many stages, just like the acceptance of illness. The important thing is to go through them all. It is not impossible, which is why there are people who have mastered all this and can provide professional support. We also tell civil servants and MEPs that the average stay in hospice care, even by world standards, is 3 weeks. That is where the difference with social care, which is more often than not long-term, will come in. The question then is: have the people of Latvia really not earned this 3 weeks?

I think this question should remain open. I hope it will be answered in the form of a hospice. Perhaps there is something else important that I did not ask, but that would be important for you to say?

You asked very deep and important questions and one of them completely cornered me, but that is very good. There is one nuance, going back to why we started doing this, I would ask people to think about it, not in some unintelligible compassionate light, but in a purely selfish way, thinking about themselves. Not for anyone else, but only for yourself. Let everyone think as he would like. Would they like a carer to come to them for half an hour and then leave them completely alone, not knowing what to do or what to do, or would they still like a hospice service? Or at least to have the possibility to receive this service. At the moment, there is nothing. So here I am, asking everyone to think selfishly for themselves.

How do I want to die?

Yes, how I want to die and what I have done to make it happen. Maybe I have voted My voiceI may be a volunteer, I may have helped the movement a little, so that those who are passionate and active about it at least have the means to pay for the heating of the office, so that the volunteers have a place to meet and continue to do their good deeds. You can think about that.

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The conversation was published on the portal nra.lv, republished with permission of SIA Mediju nams.