As the wife of the Evangelical pastor Ruth Šormová (54), she often traveled around the republic. During her work in Soběslav, she founded the Diakonia Rolnička, which helps children and adults with intellectual disabilities. After moving to Nové Město na Moravě, she headed the non-profit organization Portimo that helps children and youth. He has three adopted children. Her current role as director of the Home Hospice, Cesta domů, is the logical result of her life journey.
Way Home – An apt name for an organization that helps people get out of hospital and spend their last days or hours at home with family, friends. Why is it not yet obvious and how are the final moments going? Ruth Šormová and I also talked about it.
For two years you have been the director of the Cesta domů Home Hospice, which accompanies people at the end of their lives. What led you to this – was it a random choice, or were you interested in this topic before?
When my family and I decided to return to Prague after thirty years in 2018, I looked at where I was going professionally. I have known the way home for a long time, but more indirectly, even though I was interested in the subject of hospice and palliative care. I looked at it with respect because it is a reputable non-profit organization that has taken up a difficult topic and provides quality health and social services to people at the end of their lives – adults, children and their loved ones. Just at the time of the move, the management announced the director selection process, so I applied and I did it.
Your entire working life is for people with a variety of problems, be they medical or social. Do you think the dying are aggrieved?
The problem is that the topic of dying is largely taboo and is changing very slowly. We don’t talk much about the end of life, and when we want to, we often don’t have anyone with whom. In planning everything around birth, we would rather deny death. At the same time, choice is important even when dying – everyone should have the right to choose, as far as possible, what they want and what they definitely do not want. So if there is a flaw, that’s how we’ve tried to live up to our ideas and wishes throughout our lives, but at the end of our lives we often don’t have that opportunity.
According to research, most people would like to die at home, but few will. Why?
Yes, that’s right – the data suggests eight out of ten people would like to die at home, but the reality is the opposite. And why? There are many reasons: many do not even know about the possibility of help or cannot imagine that it could be managed. Caring for someone terminally ill can be very demanding and exhausting, but there are support and services that can be used. If successful, this marginal and difficult situation can be, in a sense, a valuable time and opportunity.
How does the Way Home help families and the dying?
We provide mobile specialist palliative care, we are available to patients 24 hours a day, 7 days a week. In fact, we can take home whatever hospital care offers to relieve pain, shortness of breath or anxiety. We also offer consultancy, equipment rental and replacement services for the area and bed. We also have a support team of therapists and psychologists who also look after survivors. The clinic is nationwide, we provide direct care for adults in the capital city of Prague, we also travel to children from the Central Bohemia region.
Enlightenment is the second and no less important pillar of the Way Home. We publish books, run a professional library and charity shops. We spend a lot of time educating professionals and lay people, we talk in schools, interns come to us, we communicate in the media and on portals The way home, Dying or My death.
It is therefore home palliative care, consisting not only in trying to prevent the patient from suffering from pain, but also in maintaining its dignity until the last moment. You are also helping the dying environment to cope with the situation. How do you work with doctors in this?
It is quite diverse. General palliative care can accompany the patient for a long time, not only in the final stage of the disease, and it can be performed by any doctor. Many offer it in a natural and brilliant way, while others are bothered by fears or other obstacles. Specialist palliative care, which we provide at Way Home, concerns only the final stage of the disease and is a continuation and supplement to the general one.
How patients reach you and how long your help may last
The median of patient care in our home hospice is relatively short, ranging from 7 to 10 days. Only in exceptional cases are patients cared for for several weeks or more. Sometimes our family will look for us, the doctor will recommend us, other times the patient will find out about us in the hospital.
How is this aid financed?
We mainly use health insurance and subsidies from state and local administration, we use subsidies. Part of the money comes from patient and customer payments. However, we would not be able to provide our services to the full extent and quality, if Cesta dom… did not enjoy the trust and support of donors, they are a kind of family silver for Cesta dom… we really appreciate their generosity.
How much will it cost me as a customer?
The daily fee for the care of the multidisciplinary team of the Cesta domů Home Hospice is 200 CZK. If the patient meets the indication criteria, the health benefits are partially covered by the health insurance fund and the daily care fee is reduced to CZK 100. We organize and explain everything at the first information meeting.
Do you personally meet the dying? How do you experience it?
I come to families only exceptionally, but from time to time I have the opportunity and appreciate it. We are honored to enter a private space in a marginal and difficult situation, to see a piece of unique history. We do not judge, we do not know the history of the family, relationships or connections. We are with the dying and their loved ones for a limited time and we try to accompany them as best we can. It is certain that, contrary to various stereotypes and expectations, it is not primarily difficult and only sad. Everyone says goodbye in their own way.
Can you give some examples?
Sadness is part of saying goodbye, but it’s not the only thing that accompanies us. The simplified view that mourning is only close to death does not apply, we all experience extreme moments differently. And when someone dies at home, it is somehow more obvious – each family has its own culture, customs, rituals that remain present even in the last moments. Somewhere there are more tears, somewhere else the people on the inside mourn more. Some people need silence, others play popular music. Somewhere they are silent, elsewhere they remember them together and loudly, there is also laughter, a joke, drinking wine, answering strict children’s questions and the like.
Dying around must be emotionally demanding. How is it determined whether volunteers who also professionally care for the dying on the way home are suitable for such work?
They undergo relatively long and intense training. It also includes psychological tests, we talk a lot with each other, both sides need to make sure that the decision to make such a decision is right. Work experience and previous education for volunteering are not fundamentally important criteria, character, openness and respect for others are much more important. And then it is important that the volunteer is balanced and has an anchor in life. Helping others shouldn’t be a problem-solving tool, it usually doesn’t work well.
How do you feel about your own death? And doesn’t he show up in this job after a period of numbness or sadness?
This is a good and quite difficult question that is not easy to answer. Of course, when death is around you literally every day, you can’t stop thinking about it. At the same time, the stories are so colorful and unique that they teach us a certain humility. We are certainly not the knights of death or those who do not fear death.
The second sub-question is very interesting. There is no mourning, no more fun and no laughter at The Way Home than anyone could ever expect. I am still amazed that at work we are united by the awareness of a strong respect for every human being. But we experience certain situations strongly, especially when someone we are in a relationship with, or someone our child or partner’s age, dies. As professionals, we certainly should not be completely overwhelmed by sadness, but naturally expressed emotions are not inappropriate, on the other hand, naturalness is a fundamental value that is usually appreciated by patients and their loved ones.
Has any story stuck in your memory?
It is unique in every human history, but of course something resonates particularly strongly in each of us, perhaps because it has to do with our own experience, family, something familiar. Stories that somehow refute myths and stereotypes appeal to me the most. Such a powerful picture of two young men who took great care of their brother to the end – all aged between twenty and thirty. Or a teenager who spends concentrated time with her dying grandmother and is not difficult to help with even the most ordinary things. And then I carry with me a picture of the family bed where the little boy spends his last moments, teddy bears next to him, and mom and dad who love him so much that despite their deep sorrow, they can give him this closeness and security.
Should dying children be present?
If I were a child and my grandfather was seriously ill, I would expect my parents to tell me the truth. I cannot imagine more importance than the fact that my loved ones are hiding something important from me. So yes, I think we should talk openly about children with death, although of course in proportion to their age. Encourage them to express what they feel, answer questions, stay close to the dying person if they are worth it, while at the same time making no more demands on them than they can handle themselves. They can also be helped by the books from our publishing house, for example When Someone Dies of Dinosaurs, No Dragons, Quiet Elephant or We Waving at You, Grandpa.
What do people want at the end of their lives, how do they live their last moments?
Some people need to talk, others like silence. Some want to be surrounded by loved ones, others “choose” the moment when they are alone for the last exhalation, others “wait” for someone from a distant country to return. Somewhere she is crying, elsewhere she is remembered happily. Some people need to say something, solve something, for some you have to deal with old, bruised relationships, for others it is important to organize a winter garden, others have to take care of, with whom not to forget to invite to a funeral … dies when there is an opportunity to thank you for all that is nice, forgive what has failed, and say goodbye.
Does anyone feel he is leaving? If he has time to arrange everything he deems necessary, will he go away reconciled with life, with the world?
Reconciliation is a mystery of a kind, and I consider it a state of the soul, something intimate that we do not ask for. Sometimes it’s noticeable, other times it’s just a guess, and often we just don’t know. The truth is that those expected to die often choose their final exhale moment – for example, the moment their loved one leaves the room for a few minutes. It also often happens that the dying person “waits”, eg he still has to meet with someone who comes back from afar or with whom he would like to learn something important. But even that doesn’t always apply, sometimes it doesn’t, and the end of life is always different, you can’t plan it.