Entering Palliative Care

Ksenia:
How, when, and why did palliative care appear in your professional history? Could you take us back to the very beginning of your journey?

Piret:
I have an obvious starting point. In 2010, I was in Germany, looking for a job at the end of my PhD. That’s when I came across a job posting at the former Interdisciplinary Center for Palliative Care at the Ludwig Maximilian University in Munich.

When I looked it up, I thought, 'Oh, it’s about helping people at the end of their lives. ' My dissertation focused on cancer patients’ experiences — not dying from it, but living with it. So, I immediately felt a connection to the idea of palliative care.

Then, by some miracle, in December 2010, I was offered a researcher position at the LMU Interdisciplinary Centre for Palliative Care. And that’s where my journey into palliative care truly began.

Of course, I had already been studying human experiences of illness for a long time, but at that point, the term 'palliative care ' was still new to me. I was familiar with the word 'hospice because Finnish cancer patients had told me about hospices in their cancer journeys. However, I’ve often shared that the concept of palliative care did not exist in Finland then. There were some pioneers, like Dr. Tiina Saarto, but the actual developments in Finnish palliative care occurred only after I`d completed my dissertation in 2011.

So, that’s how it all began. And now, it’s been 15 years since I first entered this field.

Ksenia:
And you stayed in this field — you remained in palliative care. What influenced your decision to stay?

Piret:
It may be the feeling that my competencies as an anthropologist were unique in this interdisciplinary field. In palliative care — especially in the countries where it is referred to as palliative medicine — physicians play a central role. And while they have a broad scope of practice, their focus remains heavily centred on symptom control and pain management. The majority of papers published in academic journals focus on medical issues.

I found that I was able to develop strong connections with other professionals in the field, including chaplains, nurses, psychologists, and many others. Palliative care has always been a deeply interdisciplinary field, and my anthropological perspective became my distinct strength. Understanding the human experience — how illness is shaped by culture, language, and discourse — is not necessarily the strength of those specialising in symptom control. My expertise in this area fits nicely into the broader landscape of palliative care.

That said, I have also considered other career paths. For instance, if I had pursued sports medicine, I would have been equally passionate about that field. Sports also encompass existential crises — when an athlete’s body breaks down due to injuries and when they must find the motivation to rebuild.

These are not just one-time events resolved overnight but something people struggle with over long periods. And then comes the question: How can we, as professionals, support them? Whether it’s a sports injury or a cancer diagnosis, the psychological and existential dimensions of these experiences are profound.

Another turning point for me was after I finished my dissertation. I realised that cancer patients needed a more comprehensive form of support, yet physicians often used very few words in their communication. Patients were frequently left guessing what was meant — unsure of the implications of what their doctor was saying. A simple yes or know-based screening tool does not create space for coping and enduring. People must tell their stories, and physicians must listen to make a difference.

When I entered palliative care, I quickly noticed that this aspect — human communication — was almost entirely missing from medical and nursing education. Physicians and nurses were highly trained in clinical care, but they were not necessarily taught how to communicate with patients as human beings. So, this journey became a true passion for me. I’ve always believed that if I dedicate myself to something, it should have a meaningful impact on people. I don’t know if research helps people directly, but I like to believe it does.

And, of course, staying in this field wasn’t just a straightforward decision — it wasn’t like I simply chose palliative care, and that was it. It’s always about projects, pilot studies, funding, etc. For me, as a researcher, the reality differs from other professions. While clinicians have long-term career stability, researchers often face uncertainty. When one research project ends, the university might say, 'We can’t hire you until we secure new funding. ' So, I could have fallen off the wagon many times simply because of how research careers work. And I think because I am the 'old ' generation, being unemployed has always been embarrassing for me.

But ultimately, I never felt the need to change my path completely — I never thought, 'Maybe I should become a nurse instead.' I stayed within research, and there has always been a place for me in this field.

Roman:
Over these 15 years, you've worn many hats — you've been a manager, an anthropologist, and a thought leader. How do you define your professional identity within palliative care? Do you see yourself as a combination of all these roles or do you feel there is a core identity that best describes you?

Piret:
My core identity is my passion for this field and my role as an advocate for decent human care — regardless of the specific research project I’m working on. That, for me, is the foundation.

But at the same time, I could have ended up in a completely different field and been just as dedicated to it. I suppose I’ve always had the spirit of a pioneer — a young idealist who wanted to improve things.

From Science to Clinical Setting

Ksenia:
How did it feel to enter the palliative care field with a special expertise of an anthropologist?

Piret:
It was quite an interesting transition. When I started working as an anthropologist in a clinical setting, I had a background only in archival research and interviews. Then, suddenly, I found myself embedded in a team treating actual patients.
I had to redefine my role as more of a bystander — someone who was not treating patients but was still deeply involved in the human side of care. Although I never treated anyone directly, I found that I could still engage in healing conversations — both with patients and colleagues who sometimes needed support. Also, over the years, I have unofficially acted as a supervisor for many academic pursuits. People would simply come to talk to me, and I became a mentor in many ways.
My expertise in research methods has always been my core strength, but when I started working in the clinical setting, I questioned whether my knowledge and methods were sufficient for the field. Suddenly, I was surrounded by quantitative research — statistics, calculating averages, means, p-values, and correlations. I remember thinking, 'Okay, you can calculate all of this… but what does it mean for this particular patient or caregiver?' Later, when I gained more freedom in my research, I started experimenting with qualitative methods.

In public health, there is often a perception that research without numbers isn’t valid. However, we face a significant challenge in palliative care: achieving large sample sizes is difficult. You can try, but dropout rates are high, and it's always a struggle.

I encourage my students to conduct observational and participatory studies — methods at the heart of anthropology. Ultimately, this became my strength rather than a 'self-diagnosed ' weakness.

I might not be the best at randomised controlled trials or step-wedge trials, but I do know how to conduct meaningful, impactful qualitative research. We’ve seen actual results, even though many of our studies were small-scale and with zero funding. Some master’s theses from our group have even been published in top journals simply because of their high quality and innovative methodology. So yes, this is pioneering work. Even without significant grants, conducting fully executed, rigorous research is possible.

Roman:
What led you to focus specifically on education within palliative care? Was this something you initiated, or something led you in this direction?

Piret:
To be honest, in my first few years, my research wasn’t even in palliative care — it was primarily focused on spiritual care. Early on, I joined the Spiritual Care - EAPC, and we were working on a White Paper — an entirely voluntary project that took us six years to complete.

We were trying to define spiritual care competencies — because this is one of the most misunderstood areas in palliative care. Spiritual care is mentioned in definitions and discussions, but good research is lacking. We still don’t fully understand what patients want, and many healthcare workers struggle to grasp what spiritual care competencies entail.

So, I spent much time working on spiritual care education, particularly in Germany and internationally. We conducted surveys to understand how spiritual care education is offered in different contexts.

My shift to palliative care education happened after I had been unemployed for a while. There were two gaps in my career during which I had no funding for my position. One occurred when the entire Spiritual Care Professorship at the LMU lost funding, and I had to look for a new job. At that time, I started working in hospice care, studying the needs of migrants at the end of life, but this project was only funded for one year.

I received two job offers at some point. One was in Salzburg, at a WHO Collaborating Centre that focused on nursing education in palliative care. Before I arrived, this job had predefined targets of reference (TORs). I aimed to develop palliative care education strategies that aligned with these TORs.

So, from 2017 to 2024, I worked at Paracelsus Medical University in Salzburg. During that time, we focused on palliative care education across various research projects.

The WHO European region is much larger than the EU, so our focus extended beyond EU countries to include nations without well-developed palliative care education systems. Several attempts have been made to map palliative care education across different countries. Still, the projects aligned with the work of WHO allowed me to build a broad professional network because, in reality, anyone involved in palliative care is also naturally interested in palliative care education.

This was a very intense period of my career. We were involved in many exciting projects and published extensively. At the end of this phase, I realised that we needed clear quality criteria for palliative care education. This realisation led to the development of a Cost Action funded project CODE-YAA@PC-EDU, launched in 2023.

Quality Indicators in Education

Ksenia:
Can you tell us more about the COST programme?

Piret:
I admit I often start projects because I get annoyed by something. In this case, what frustrated me was that every nursing or medical school — unless a larger initiative existed — would constantly restart from scratch. It was the same pattern every time: defining competencies and developing a curriculum.

There had already been several major projects that worked on this, such as the EDUPALL Learning Technologies, led by Daniella Mosoiu, which focused on undergraduate medical education, or the NursEduPal@Euro Home, where we developed curriculum frameworks and recommendations for undergraduate nursing programmes. These were the projects I was personally involved in, but similar initiatives were happening everywhere. And each time, it felt like we were starting from zero again — as if nothing had been done before.

I understand palliative care is rapidly evolving, so recommendations must be updated naturally. For example, in 2014, there was barely any focus on dementia care, Parkinson’s patients, or cardiac patients in palliative care discussions. It was still very cancer-centered. Now, we acknowledge that people with COPD, heart failure, and neurological diseases have distinct palliative care needs. Their medication regimens at the end of life differ, and we must adapt. So yes, regular updates are essential.

I started seeing patterns — recurring gaps in palliative care education. At first, we didn’t use the term 'quality indicators,' but the idea was inspired by the WHO’s work on quality indicators, especially on palliative care, which includes two QIs for education as well.

We started thinking — could we adapt this concept to help countries assess their palliative care education systems? That’s when the COST project idea indeed took shape. And I had great people nearby who encouraged me to go for it, such as Prof. John Ellershaw from Liverpool.

It was the first time a palliative care-related project received COST funding. It was also the first time COST had supported a project that was so strongly education-focused. When Erasmus+ funding is allocated to education, the amount is minimal — perhaps €400,000 split between four universities. And honestly, you can’t do much with that. In particular, the long-term maintenance of educational programmes is a big problem.

The COST framework, however, is different. While nobody gets directly paid, it enables: networking, collaboration, and setting milestones for future research. We had the flexibility to design something that fits the needs of palliative care education. Instead of forcing one-size-fits-all recommendations, we are working to map out realities — to help countries understand where they are now and how they can make practical improvements.

So, instead of saying, 'Follow this new competency framework, ' our approach is to identify the current development potential, use the new assessment tool CODE-YAA, and get support from the COST network. This allows educators to determine which steps are appropriate for their country rather than being instructed to adopt something unrealistic.

Steps Toward Change in a Care System

Roman:
You've lived, worked, and studied in multiple countries and must have seen apparent differences between them. Some seem far ahead in palliative care education, while others struggle. What do you think defines success? What are the key obstacles?

Piret:
Like with any significant change, multiple factors must align simultaneously. For example, the Palliative Care Law is now 10 years old in Germany, and they’re discussing its revision. But even before the law was passed, a formal declaration stated that every medical student should have access to palliative care education. By 2014, this had become mandatory in German universities. However, the original policy declaration was made as early as 2009.

Sometimes, societal demand comes in unexpected forms. For example, Germany is facing debates on assisted dying and euthanasia. The legal landscape is constantly shifting — it was banned, then allowed again, and now it’s in limbo. And in a society where people demand full autonomy, some want to schedule their deaths like an appointment. At the same time, so many people want and have the right to live to the fullest despite their illnesses. All of them need strong palliative care support. Yet, in many countries, the intensive care units are filled with elderly patients with nowhere else to go. The ICU can provide excellent but costly care that often prolongs lives but not the quality of life.

Germany has a generous healthcare system with lots of resources, and our research among migrants confirms this. Many migrants say that in their home country — let’s say, a former Soviet republic — they would already be dead. But in Germany, they receive treatment. This is both good and bad. Yes, Germany provides extensive treatments, but these are sometimes unnecessary. The country is struggling with a shortage of healthcare professionals and financial challenges, and its hospitals are in massive debt. Ironically, the only institutions thriving financially are nursing homes, some of which are now integrating palliative care and hospice services.

None of this happened overnight — Germany’s Palliative Medicine Association has fought for over 30 years to build this system. And even today, Germany is not one system — each Bundesland operates slightly differently. So, we can’t generalise — but we can say that laws and innovations shape the landscape. We’ve seen some progress, both in terms of new care models and research funding. But now, a significant issue seems to be that even when research is funded and pilot programs are implemented, their continuation and integration into standard healthcare systems remain challenging.

But it seems like these mobile services in Germany, instead of being a temporary solution, have become the default palliative care aspect. Now, instead of treating elderly patients by general practitioners, they are automatically referred to specialist palliative care teams. What was initially meant to be a supplementary or stopgap measure has now become the mainstream system.

How Societal Demand is Formed

Roman:
You also mentioned societal demand, one of the most formidable challenges. Laws can be advocated for, funding secured, and new care models developed — but how do we cultivate public demand for palliative care?

Piret:
Yes, it’s complicated. Although palliative care in public health has been discussed since the 1990s, we only had a true breakthrough in 2018, when the United Nations and the WHO signed a treaty stating that in addition to prevention, treatment, and rehabilitation, all countries should also invest in palliative care development and, most importantly, that people have the right to palliative care. This was a significant milestone. Palliative care is also tied to the Sustainable Development Goals (SDGs), which relate to healthcare access and elderly care.

We already know that we live in ageing societies. In many countries, one-third of the population is over 65. As a result, the demand for palliative care services will likely increase dramatically. In fact, in the UK, Simon Etkind’s 2017 study projected that by 2040, the demand for palliative care would be significantly higher. But during COVID-19 this prediction was already fulfilled, basically 20 years earlier than expected.

If we look at disease prevalence, we see that the most common conditions include сhronic pain (e.g., lower back pain), diabetes, cardiac disease, cancer, dementia, and other memory-related diseases. Many people in the ageing population have multiple chronic conditions. The problem is that medical education has traditionally been disease-centered — meaning that one specialist might know how to treat one disease.

Still, they don’t necessarily know how to manage complex, multi-disease cases.
This is where palliative care comes in. It focuses on the person rather than just the disease and takes a holistic approach, considering both symptoms and quality of life. It also engages families and caregivers as part of the care process. So, the societal demand for palliative care is something we have seen coming, but the willingness to prepare for this challenge is moderate.

And they could live much better lives if they received proper care. Some patients tell me things like, 'The last five years of my life were pointless. I didn’t need them.' Isn’t that a tragedy? Should a person feel that their final years were not worth living? That their life should have ended five years earlier because they stopped experiencing joy and love, because of health-related suffering?

This is a fundamental societal issue. We celebrate birth, but we no longer celebrate the completion of a life well-lived. Traditional end-of-life rituals and acknowledging a person’s legacy have been erased from modern society. Instead, people say they want to die on Friday at 6:00 p.m., because it is convenient.

People who have seen palliative care firsthand know what it offers and advocate for it. For many others, it’s still synonymous with death. Some people deny their need for palliative care simply because they don’t understand it. This is where education is critical. If we could find the correct language to explain palliative care, we could increase the demand for palliative services and motivate policymakers and key stakeholders to design better services.

The good news is that we have a small but strong movement and are doing everything possible to change this. This gives hope — even if some countries can’t fully catch up, they can at least develop their palliative care services to align with their population’s needs, legislation, and traditions. It doesn’t have to be a replica of the UK or German models. Instead, developing localised models based on the population's actual needs would be valuable.

Death Literacy Index

Ksenia:
Tell us about your current project.

Piret:
After moving to Estonia in 2024, I received five years of funding for a research project that would map the palliative care needs of different regions—ARS MORIENDI ESTONIA 2030. We are going to survey people over 60 to understand what they value at the end of life, what their experiences have been so far, and what kind of support they need. We will also include healthcare professionals and social workers in the study to gain insights from their perspectives. The goal is to create an iterative process, using all these perspectives to identify gaps and make policy recommendations. This could lead to policy changes or evidence-based transformations in healthcare services, ensuring that services match people's needs.

It will take a few years. I was genuinely amazed that the Estonian Research Council recognised the importance of this research and decided to fund it. Currently, Estonia has hospices, palliative care wards, and government funding for additional palliative care beds. But the real problem is staffing — not enough trained specialists work in these facilities. Beyond that, palliative care isn’t just about wards — most people who need it die outside of specialised units.

One key aspect of our study is that we will also measure the Death Literacy Index in Estonia. This tool was initially developed in Australia, but it has already been tested in China and Ireland. Using this internationally recognised instrument, we can generate data that can be compared globally.

Another part of our project involves social media campaigns to raise awareness.
Using the Death Literacy Index, we want to identify which age groups have the lowest understanding of palliative care. Then, we can design targeted awareness campaigns to reach the people who need this information the most. If we broadcast information on national television, it might only reach specific age groups, and those who urgently need the information may not see it there. So, we plan to use a mix of platforms — everything from TikTok to local newspapers — to ensure the message reaches all relevant demographics. We will also carefully work with language, finding the right way to talk about palliative care so that people don’t assume it’s only for the final days of life.

We will publish the results once we have them.

Professional Mobility

Ksenia:
You’ve worked in many different countries — what has your experience been with professional mobility? What challenges did you face when moving between different healthcare or palliative care systems?

Piret:
Honestly, most of what I have are anecdotal stories! For example, movin from Estonia to Finland wasn’t very problematic, as the two countries had very similar systems. In both places, you have healthcare centres, doctors assigned to specific districts, and a structured system for accessing care. But when I moved to Germany, I didn’t understand how the GP system worked at all. It took me years to find a GP whose office was located in my residential apartment block — which seemed odd to me. It wasn’t like the healthcare centres I was used to.

I also noticed something else — having an accent makes a difference in how one is treated. I’ve heard this from many people I’ve interviewed as well.

It’s not necessarily intentional discrimination, but if you don’t understand how the system operates and find it difficult to express yourself clearly, you may not receive the care you require. This doesn’t just apply to foreigners — even within a single country, barriers can arise.

Considering professional mobility, especially for researchers like me, my story is a survivor story. Because in reality, someone with my background — from my field —reaching the level of professor is almost unheard of. It’s not the usual path. It’s rare. I have seen so many highly educated professionals — for example, university lecturers from Belarus or other former Soviet countries — who, after migrating, ended up working as kindergarten teachers. And God knows, I was one day apart from becoming the migrant lady in an afterschool daycare.  I’ve spent more than half my life abroad, and I’ve seen this happen repeatedly.

Do you know the famous Chinese philosopher Lao Tzu? He has a saying about people never going to the neighbouring village even though they hear the dogs barking there. He meant that the people — when they hear something unfamiliar, something different — stay where they are and live happy lives without ever venturing into the unknown. I think that’s a powerful thought. Moving to another country opens your eyes, but it doesn’t always bring happiness and a better life. If someone thinks that life is better somewhere else, that being a migrant means having a better life, I cannot confirm that. But I of course do not know the other side of this story.

The Burnout

Ksenia:
I know that you have personally experienced burnout. If you’re comfortable, could you share how it was for you and what helped you recover?

Piret:
It is a very long development and I wouldn’t say I have completely overcome it. But I believe that when you burn out, you have to make changes and create space for something new. As long as you have the energy to make those changes, you just have to go for it.

For me, the high peak of burnout involved anxiety issues and self-destructive impulses. At one point, I simply couldn’t go outside of my house. I didn’t want to see neighbours because I was afraid they might ask me about my life or work. I felt trapped — like I wanted to stay in bed, watching series all day. Even though I live in a beautiful area, I couldn’t even summon the motivation to go out for groceries. Before online meetings, I needed to lie on the floor and do breathing exercises to get a grip.

Ksenia:
It’s brutal. Would you have any advice for young professionals, especially those just starting in palliative care? Many of them try to do everything at once. How can they avoid burning out?

But there are red flags. My red flag was being a total workaholic — an actual condition. Even when people warned me, saying, 'You’re working too much — this isn’t normal,' I didn’t listen. I also tried to compensate by doing a lot of sports, which only added more stress to my system. Things worsen if you work too much and add more pressure through other activities.

Ksenia:
And do you think there’s a way to prevent it?

Piret:
I honestly don’t know. But I have to say — the academic environment is brutal. I don’t know that much about healthcare, but academics is one of the hardest environments to survive. Even the army supports its veterans and cares for the wounded. But in the academic field, if someone burns out, it’s just a gain for someone else. Nobody picks up the 'fallen people ' who have given their lives and careers to this field. This seems to be a global issue in the academic world. Universities have become highly managerial, where administrators — not experts in their fields — decide what’s best.

And then, of course, there’s the issue of research funding. It’s especially difficult for young academics who want to have a family. Young researchers often face a tough decision: they want to get a PhD, but how on Earth do they start a family on a three-year scholarship or grant? On top of that, there’s still the expectation that you will need to go abroad at some point in your academic career. It’s a little absurd, you have got to admit.

And it raises another issue — the academic pipeline is breaking down. Even if you have an excellent research project, you can’t find PhD students anymore. The younger generation is already much wiser than my generation. They refuse to work out of pure solidarity — they want a salary, fair working conditions, and vacation time. Otherwise, they won't work. And rightfully so. But the result?

A Quickfire Round

Roman:
Piret, thank you very much for the interview! In conclusion, let us do a quickfire round. I’ll ask you five questions, and you have to answer briefly — one sentence max.

Question #1:
What do you love, 100%?

Piret:
Hearing my friends laughing.

Roman:
Question #2:
What is the meaning of life for you?

Piret:
I can’t say 42, can I?
Also, maybe… balance. Though I can’t fully define what that balance looks like.

Roman:
Question #3:
Are you afraid of death?

Piret:
Yes, very much. Otherwise, I wouldn’t be studying it.

Roman:
Question #4:
What makes you happy?

Piret:
Being outdoors, feeling the sun, taking long walks, being on the road — travelling somewhere unknown.

Roman:
Question #5:
What is your biggest dream?

Piret:
I should start dreaming again. Dreams don’t always unfold how we expect, but we should be more like children — a little bit of wonder and adventure. They say curiosity killed the cat, but maybe the cat had been having a great time exploring before that happened.