Věra, you worked at Sue Ryder for 7 years as a nutritional therapist, yet in 2019 you became the Coordinator of Palliative Care. You moved from the topic of nutrition to that of death. Why?
During the years I’ve been here, I’ve played many different roles and I enjoyed all of them. I was a nutritional therapist, a warehousewoman, a shopper, a chauffeur, a photographer, a griller of sausages, a waterer of our clients’ garden plots, a market seller of meat, an angel in the entourage of Mikuláš, a lecturer, a spy, a postwoman, a scout, a companion of our clients as well as a guide to the dying and their close ones and finally, a COVID cleaning lady... I have experienced floods, hail, diarrhoea, flu, organizational changes. When a new position was created here, I thought it would actually be a good idea to continue doing what I used to throughout the years anyway. But I wouldn’t say that I have moved to the topic of death, but rather to that of life’s end.
Really, from the nutrition of seniors, there’s only a small step towards an interest in palliative care. A healthy and independent client doesn’t particularly need a nutritional therapist. The more a person’s condition worsens, the more nutritional problems surface. I have always been most interested in the care for people with various forms of artificial nutrition, with problems of the healing of wounds or swallowing disorders. Precisely those people are often very close to being offered palliative care. I enjoyed solving their problems in context – not only the figures of something but what that figure means for the life of a particular client. In general, I like to take a complex approach to a person and the care we design for them. In Sue Ryder there are good conditions for this – we work with the psychobiographic model of care, there’s an amazing multidisciplinary team that you can collaborate with, so it kind of offers itself.
Many people are still unfamiliar with the term palliative care. What exactly are the responsibilities of the Coordinator of Palliative Care at Sue Ryder?
In my style, she’s kind of like Mrs. Columbo, if you know what I mean. On the other hand, if I were to have a native American name, I would certainly be “The one who sticks her nose into everything”. You choose. My responsibility is to identify clients that need palliative care and ensure that they are given this care, the best care we are capable of. And we always want to get better! I don’t interfere with the expertise of individual colleagues, instead, I take advantage of their qualities and the diversity of the multidisciplinary team and quietly pull on the strings. One of my great responsibilities is to predict what type of care a client should receive, and ensure that, when needed, it is accessible. What, or who we might need, what skills we need to know, things to arrange, I gauge the limits and quality and try to create such conditions for the team so that they are not taken aback by a situation. I communicate with families, doctors etc. The point is neither to shorten the lives of our clients with terminal illnesses nor to extend their lives by all means possible if they don’t want that, but to help them live out the rest of their lives with dignity, comfortably and according to their wishes to the greatest extent possible, in the kind environment of Sue Ryder. I also often make coffee for my colleagues, during which I subtly educate them a little…
How did you prepare for this role?
I think I would call it progress rather than preparation. The trust of clients and their close ones to put the end of their lives in our hands always played the main role, because it’s an invitation and an opportunity to learn something about each of their stories. I have been professionally as well as personally affected the most by extraordinary colleagues with which I had the opportunity of working. They passed onto me their skills while simultaneously giving me the independence to do what I was good at. You won’t meet a lot of people like that during your lifetime and I was incredibly lucky. Today, it is my younger colleagues that challenge me with new perspectives and force me to continue learning and educating myself. Thanks to projects supported by Nadační fond Abakus and now also the European Social Fund, I have had the opportunity to participate in many courses, seminars, congresses… I managed to get internships abroad, I met a lot of educated people. Also, cooperation with experts from Cesta domů was very significant for me. Seeing them at work, learning communication, understanding how complexly we can view those that we care for. It was an amazing experience. Thanks to them, even my final thesis was dedicated to nutrition in geriatric palliative care. And what can I say, even my own experiences as a patient, whether good or bad, come in handy.
Let’s return to nutritional therapy and nutrition itself. What role does it actually play in palliative care?
Clinical nutrition plays the most important role for our clients in prevention and recovery. Even in palliative care, however, it can be and very often is in the forefront as a generally controversial topic. It is applied especially when it comes to clients with swallowing disorders and those that are fragile from a geriatric standpoint. Nutrition is a clinical intervention, which can, like everything else, help or hurt and increase a person’s suffering. It all depends on how it’s implemented. The need to eat and drink is perceived as basic, very strongly. Even every child knows that the one who doesn’t drink or eat will die! The fear of death by starvation is deeply rooted in us. I think that anyone who has ever accompanied a person who can’t eat or doesn’t want to and is literally disappearing in front of your eyes will tell you how difficult it is. There are many options for artificial nutrition. We’re capable of shoving all types of tubes into a person, and sometimes this is helpful but we always have to reflect whether we’re doing it for the client, their close ones, or for our own feeling of having tried everything. Our natural tendency is to save. In palliative care, this should always be very carefully balanced. It’s about finding the extent of benefit and pleasure and respecting the wishes of the client who is rejecting nutrition. But this is something I could talk about for an entire day.
You also work for the Centrum provázení Gynekologicko – porodnické kliniky u Apolináře (Guidance center of the Gynecological-birthing clinic at Apolinář). Is your work there also related to palliative care?
I work at neonatology, usually with parents of extremely premature children. My responsibility is to be a patient guide to them through their difficult life situation, no matter how it turns out, and, well, palliative care is sometimes a part of this. Fortunately, from a statistical standpoint, this is quite rare, even though it’s much more common than one would hope. For me, this means accompanying around ten families yearly, who have either gone through something like that with us, or in the past. The start of life of premature babies is usually quite nerve-racking and serious complications do appear occasionally when despite the utmost effort of doctors and the wonders of modern medicine, the child simply cannot be saved. In other cases, there are children with genetic diseases or disorders which they can’t live with, or it would only be an extension of the child and parents’ suffering. In those situations, palliative care is pertinent. Here, however, I play a completely different role compared to Sue Ryder and the environment also varies. Time flows differently, everything usually takes place in the Department of Anesthesiology and Resuscitation (ARO). Surprisingly many analogies exist between my work at neonatology and with seniors, but each has its specifics.
So, you are a witness of life both at its beginning and end, but you experience goodbyes everywhere…
The word life is important to me. I work with the life and story of a specific person and family, even if it’s sometimes short or there is very little left of it.
What is it like to constantly be confronted with the terminal nature of human life?
It has never occurred to me to think of it as something special. I think it’s also because I originally studied medicine and there it’s natural that you learn about the human body, its structure and functions from the dead from the very beginning. But they’re still people and one should be grateful to them for that opportunity. My personal relationship with death is of course constantly evolving and it depends on which period of life I’m currently in. I, too, feel immortal to a certain extent most of the time, because I believe that it doesn’t concern me yet, but passing away concerns all ages, only sometimes it’s less common and not really expected. Sometimes, a particular story forces me to think deeper. I think that it shouldn’t have been that way, but it just is. But I still perceive my job as beautiful and mostly joyful. If it’s handled well, the total amount of sadness is only the amount needed to say goodbye.
What is the hardest thing about your job? And what, on the other hand, is beautiful and happy?
The hardest thing is working with a constantly changing team, but that is at the same time also beautiful and happy. Otherwise, it annoys me that I now spend much more time in the office rather than with my clients. A meeting with clients is also always happy because even after many years, I enjoy working with seniors.
Death is still a slightly taboo topic, but you often look it straight in the eye. Is there something that you have learnt thanks to this that you’d like to share with others?
Mostly, I remember messages that were given to me by some of the clients whom I had the honour and pleasure of caring for. For example, once when a doctor came to a lady of 101 years and told her that her life wouldn’t last much longer and he wanted to discuss how she imagined its end, she smiled beautifully at him and said with complete calmness: “Doctor sir, everyone who has been born in this world must also die.” And again, she added that beautiful smile. She isn’t here with us anymore, but I still think about how amazing she is.
I often think about Iva Kovandová, one of the last living “war brides”, one of the first volunteers at Sue Ryder and towards the end of her life also one of our clients. I remember those mornings when she was already very ill and spoke to us only in English, and every morning we would exchange the same sentences. She: “Where did you learn English?” Me: “In Manchester.” Then, with laughter, she would always grimace terribly, that it can’t be true and then started speaking in Czech just to be safe :-). A joke just for the two of us. I say hi, Ivy. This really is a beautiful job, don’t you think?
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Palliative care: Palliative care is an approach focused on increasing the quality of life of patients/clients and their families in a situation where life is confronted with a threatening illness.
Multidisciplinary team of Sue Ryder: A multidisciplinary team is one where multiple social and health professions work together in a team. In the case of Sue Ryder, the professions that take part in caring for a client are that of social worker, carer, nurses, nutritional therapist, physiotherapist, occupational therapist, psychologist, chaplain and doctor.