Perspective Chapter: The Development and Integration of Palliative Care at the Institute of Oncology Ljubljana

Abstract

The history of the development of palliative care at the Institute of Oncology Ljubljana dates back to the 1990s when counseling and advisory work in the field of palliative care began. In 2007, the Department for Acute Palliative Care was established with six beds to treat palliative care patients with the most complex symptoms. The beginning of outpatient care and the reestablishment of consular work date back to 2013. The number of patients increased from year to year until 2017, the first critical year when palilalia almost brought the activity to an end. With the support of patients’ associations, the activity was nevertheless maintained, sustained through the COVID-19 epidemic, and increased again in recent years. In 2021, the Mobile Palliative Unit and 24-hour telephone support were added to the previous activities.

1. Introduction

The beginning is the hardest thing, but keep your heart, and everything will be fine. (Vincent van Gogh)

The main goal of palliative care is to ensure the quality of life of patients with advanced incurable diseases by alleviating the physical, psychological, sociological, and spiritual needs of patients and with support to their loved ones through all periods of the disease (Figure 1). Treatment should be individualized based on the current condition and wishes of the patient. To ensure optimal palliative care, early recognition of needs, timely inclusion of the treatment, and its integration into oncological interventions are important [1].

Figure 1.

Palliative care periods.

Patients and their loved ones may have very different needs when dealing with an incurable disease. It is important to recognize those individual needs and appropriately tailor the most suitable management of them with an interdisciplinary approach. Support systems must be dynamic and flexible and adapted to different needs during different periods of palliative care [2].

2. Cancer in Slovenia

Among the 2 million Slovenian citizens, in 2019, there were 16,080 new cancer cases, and 6285 patients died from it. To achieve the most effective cancer control, the National Cancer Control Program was implemented in 2010; it coordinates activities according to international recommendations adapted to the Slovenian healthcare system [3]. Organizationally, there is one major central cancer center and several smaller satellite clinics nationwide. The Institute of Oncology Ljubljana, established in 1937, is a comprehensive national cancer center that carries out services required for cancer prevention, diagnostics, and treatment, as well as rehabilitation and palliative care of cancer patients.

Recently, the Slovenian Cancer Registry has been reporting a trend of increasing cancer incidence and rising numbers of patients who died due to cancer. Nevertheless, over the years, the incidence and mortality trends from cancer are becoming increasingly separated, indicating the more successful treatment of cancer patients [4]. However, according to the Lancet Commission, the proportion of patients who need palliative care in oncology is estimated at 90% of all those who die from cancer [5]. Therefore, Slovenia’s estimated needs for good holistic palliative care, just for oncological patients, are massive.

3. History of palliative care in Slovenia

The roots of Slovenian palliative care date back over four decades ago. The pioneering work began in 1980 when anesthesiology teams in all major hospitals organized pain clinics that offered specialized treatment for patients with severe pain [6]. In 1996, the Slovenian Hospice Society, a nongovernmental, nonprofit, humanitarian organization, started offering professional and lay support to dying patients and their relatives [7]. In 2000, at the Institute of Oncology Ljubljana, the first palliative team was established, working as a consultation team that supported hospitalized palliative care patients at the oncological center and offered telephone support to other Slovenian healthcare workers [8]. At the same time, some initiation of palliative care activities also started in some nursing hospitals, health centers, and senior homes. At that time, the majority of the staff had no advanced education on palliative care [9].

After several years of preparation, in 2010, the National Program for Palliative Care was accepted [10]. Nowadays, it offers a foundation for the development of that important field. From the beginning, the development of palliative care differed regionally, influenced mostly by the activism of local individuals [11]. The COVID-19 period also had a major influence on palliative care and the healthcare system in general. Some palliative care services have expanded, while others completely disappeared [12].

The Slovenian Association for Palliative and Hospice Care was founded in 2011, with the primary task of implementing different training programs for various palliative care team members. They became a full member of the European Association for Palliative Care in 2014 [13].

To accelerate research on palliative care, the Institute for Palliative Care was established in 2014 [14].

4. Current model of oncological palliative care in Slovenia

The current model of oncological palliative care for patients with cancer was developed over several years following the National Program for Palliative Care and the National Cancer Control Program.

According to the National Program for Palliative Care, since 2010, palliative care has been provided at two levels: basic palliative care and specialized palliative care [2, 15].

4.1 Basic palliative care

Basic palliative care should cover the needs of 80% of patients with palliative care [16] and should be provided by everyone who cares for the incurably sick. Mostly they are teams at the primary level of the health system (family doctor, community nurse) and any healthcare providers in an institution where such patients are treated (senior homes, general hospitals, general hospital departments, and hospices). All those providers should have knowledge of basic palliative care. Unfortunately, the necessary knowledge is still often missing due to a lack of universal palliative care education; in general, however, there is a trend for a better understanding of palliative care approaches. Also, to overcome this barrier, several educational materials and handbooks in Slovenian language have been published in recent years: Basic concepts and suggested terminology in palliative care, Handbook of palliative care and Palliative care of adult patients in family medicine: a manual for primary care physicians [17, 18, 19].

4.2 Specialized palliative care

Specialized palliative care is provided by additionally educated and experienced physicians. They usually work in palliative care most of their working time, some full-time. Specialized palliative care can be provided as dedicated hospital units in the form of acute palliative care departments, consultation work, outpatient clinics for early palliative care, mobile palliative units, and support to the providers at basic palliative care. Specialized palliative care activities are aimed at patients with the most complex needs [2, 15]. According to estimates by international experts, 20% of all patients need specialized palliative care [16]. To support knowledge at this level, an educational handbook in Slovenian language has been published under the title Palliative care of adult cancer patients in Slovenia: basic concepts and recommendations [2].

4.3 Palliative care coordination

Palliative care coordination plays an important role in providing care adapted to the patient’s needs. The name of this service can be found in the literature under several expressions, such as “palliative care coordination” or “case manager.” The coordinator is the key person who evaluates the individual’s holistic needs and plans, facilitates, and advocates through proper communication. The coordinating activity enables the monitoring of patients at home after discharge via telephone. This involves coordinating counseling for patients and relatives at home regarding current problems, measures, and options. The palliative care coordinator is the connecting link between patients and members of the palliative care team and other health and social care institutions. The coordinator connects and integrates different levels of the healthcare system. The purpose of coordination is primarily to ensure optimal palliative care for the individual patient; at the same time, good coordination also ensures optimal use of the available resources in healthcare [15, 20].

Palliative care coordinators must be professionally qualified with appropriate knowledge about symptom management and support of relatives, and also during times of death and mourning [2].

5. Palliative care at the institute of oncology Ljubljana

At the Institute of Oncology Ljubljana, palliative care has been provided for several decades, but it has become an integral part of the comprehensive treatment of cancer patients during the last few years. At first, in 2000, the first palliative team was working as a consultation team that supported hospitalized palliative care patients at the oncological center and offered telephone support to other Slovenian healthcare workers [8]. Since then, several changes and adaptations have been made. In 2006, the first internal recommendations regarding the implementation of palliative care in hospitals were drawn up; the recommendations anticipate palliative care on two levels: basic palliative care provided by health workers in all clinical departments of the hospital and specialized palliative care. The year 2007 was a turning point, with the official establishment of the Department for Acute Palliative Care with six beds. Later, additional specialized services were added: in 2012, an official counseling service; in 2013, an outpatient clinic for early palliative care; and in 2021, mobile palliative care units for patients at home care with 24/7 phone support for patients and healthcare providers elsewhere. Today’s scope of work of palliative care team members does not include only patient care, monitoring, and coordination but also educational and research activities (Figure 2).

Figure 2.

Palliative care at the Institute of Oncology Ljubljana.

In 2009, the Institute of Oncology Ljubljana was recognized by the European Society for Medical Oncology (ESMO) as a Designated Centre of Integrated Oncology and Palliative Care, an oncology center with the successful integration of palliative care into a comprehensive oncological approach; we have continued to fulfill the criteria since then [21, 22].

5.1 Unit of acute palliative care

This hospital unit is the oldest ongoing specialized palliative care service at the Institute of Oncology Ljubljana, established in February 2007. Since its foundation, the number of beds was increased from 6 to 12 during the COVID-19 period. Today, it is a seven-bed department in which specialized palliative care is offered with an interdisciplinary approach to the patients with the most complex needs. In addition to physicians and nurses with special knowledge of palliative care, members of the pain management team, psychologists, psychiatrists, physiotherapists, dieticians, pharmacists, spiritual supporters, volunteers, and others are included in the treatment [23].

The annual number of admissions to acute palliative care is increasing, while the average length of hospitalization remains the same over the years. In 2022, 355 patients were admitted to the acute palliative care department, with an average length of stay of 5.4 days. The vast majority of patients were admitted from home as part of the coordination program, and most of them (60.8%) were discharged back home, (5.9%) were transferred to hospice, and (28.4%) died at the department.

5.2 Consultation service

The consultation service has been monitored since 2012. Today, as part of this service, a triage of all referrals to specialized palliative care is done, as well as consultation visits and family meetings of patients from other departments of the Institute of Oncology Ljubljana are carried out. According to a review of available information during triage, a patient is directed to the most suitable services for his case: hospitalization in an acute palliative care unit, consultation visits to other departments, monitoring in the outpatient clinic, 24/7 phone support, or visits with mobile palliative care unit.

From 2014 to 2019, we received, on average, 199 referrals per year; however, in recent years, we have observed a significant increase in referrals to 433 in 2020, 617 in 2021, and 811 in 2022.

In 2022, 56% of referrals came from the Department of Medical Oncology, followed by referrals from the Department of Radiotherapy (24.1%) and the Department of Oncological Surgery (6.3%), as well as a significant increase in external referrals (family physicians, other hospitals in the region) from 2.5% in 2020, 3.4% in 2021, to 13.5% in 2022.

Consultation visits include a review of documentation, a conversation with a patient and his oncologist, a clinical examination of a patient, family meetings’ participation, and help in difficult communication and counseling.

From 2012 to 2019, we held, on average, 200 family meetings per year; in 2020, we carried out 214; in 2021, 233; and in 2022, 205 of them.

5.3 Outpatient clinic for early palliative care

The outpatient clinic has been operating since July 2013. Indications for this type of management have been changing over the years, but mostly patients were directed to that service by their oncologist based on their complex needs that required more intensive monitoring and support. Currently, we advise outpatient clinic management for patients with incurable cancer in the period of early palliative care, when they are still receiving specific treatments, and for patients in the late period of palliative care, if they are easily mobile and visiting the clinic does not present unnecessary burdens. The purposes of early palliative management are additional support to the patient during actual specific treatment, help in understanding of the disease, help in dealing with symptoms (physical, psychological, social, and spiritual), providing assistance in decision-making regarding cancer treatment, nutrition, physical activity, and also to ensure the continuity of care, providing support to loved ones, preparation for the last period of life, as well as recognition and addressing of the individual’s spiritual needs.

Nowadays, the outpatient clinic is open on working days, several hours per day, also for patients on specific oncological therapy at the Institute of Oncology Ljubljana, regardless of their region of residence. The frequency of visits depends on the patient’s problems and is adapted to the wishes and abilities of the patients and their families.

Between 2014 and 2019, in outpatient clinic we treated an average 183 patients/year. In 2022, 513 examinations were carried out (242 first time, 273 control), significantly more than in any previous year. Having own space for an outpatient clinic enabled more visits every day.

5.4 Telephone support

During the early period of the specialized palliative care at the Institute of Oncology Ljubljana, the telephone number of the coordination office was active only during regular working hours every weekday. At that time, on average, around 400 patients were supported in this service annually. Since the COVID-19 period, the telephone number has been available 24/7 and provides support for patients and their relatives in palliative care, as well as counseling for medical professionals. The activity is carried out for all cancer patients regardless of the region of residence and regardless of the period of palliative care. When appropriate, the patient and loved ones are referred to local palliative care teams. For documentation, “phone cases” are recorded; these are individual records of activities to resolve problems; several phone calls per day may be required for one phone case. We also do not record short coordination calls within the hospital.

Since we started to record phone cases, there were 1573 telephone cases in 2020, 2344 in 2021, and 4457 in 2022. Since September 1, 2021, they have been covered by the Mobile Palliative Care Program and are officially recorded in the Register of Specialized Palliative Care at the Institute of Oncology Ljubljana.

5.5 Mobile palliative care unit

The Mobile Palliative Team Program, covered by National Health Insurance, has been taking place at the Institute of Oncology Ljubljana since September 1, 2021 and incorporates palliative care services, such as triage, a consultation service, an outpatient clinic, 24-hour telephone support, and home visits. Most of these services have been carried out at the Institute of Oncology Ljubljana for many years; in contrast, the Mobile Home Visits unit was introduced in 2021. The Mobile Palliative Care Unit complemented the previous activities of specialized palliative care at the Institute of Oncology Ljubljana.

The Mobile Palliative Care Unit visits patients at home during the period of late palliative care and dying. It supports patients with incurable cancer who are less mobile or for whom traveling to the hospital causes a great deal of effort and burden. The Mobile Palliative Unit of the Institute of Oncology Ljubljana covers the Central Slovenia region from Monday to Friday. The team consists of a physician and a registered nurse, with additional staff if necessary.

In 2021, from September to December, the Mobile Palliative Care Team completed 164 visits and 631 visits in 2022, which ranged from 41 to 61 visits per month. One effect of palliative care home support was a drop in the hospital mortality of patients from the Central Slovenian region, from 64% in 2017 to 57% in 2022 [24].

5.6 Educational activities

The specialized palliative team is dedicated to education in the field of palliative care. Members give lectures on palliative care in undergraduate programs. Also, mentorships are offered to residents of oncology, family, and emergency medicine who have obligatory rotations at the Department of Acute Palliative Care.

Once a week, internal lectures are prepared by palliative care team members together with invited external lecturers. Several times a year, intensive training courses in the special skills in palliative care are held, such as the workshops “Communication,” “Last Days of Life,” and “Pain Treatment”.

Team members are also active on the national level of education and are part of the Slovenian Association for Palliative and Hospice Care educational team that performs multidisciplinary educational programs for all palliative care team members, several times a year. Over the last 10 years, more than 650 health professionals completed 60-hour intensive palliative care education. Moreover, more than 1000 participants attended the first four Slovenian Congresses of Palliative Care.

One important aspect of education is publishing educational articles, handbooks, and manuals for health providers; in recent years, several have been released [2, 17, 18, 19].

To improve knowledge about palliative care of patients and their relatives in the Slovenian language, the online platform https://paliativnaoskrba.si/ was started in 2014, where leaflets of the Butterfly Project with useful information and advice on palliative care are available. Patients can also find contacts of specialized palliative care team providers from all over the country.

5.7 Research activities

As with all the clinical and educational works, it is sometimes difficult to carry out research activities, but for the time being, the members of specialized palliative care attempt to conduct at least some simple research works and present their results at National and International Congresses or publish them in medical journals. Research topics cover analyses of clinical work, the impact of new interventions and services, and the influences they have on the place of care and death [22, 25].

6. Conclusion

Despite the many advances in oncology, many cancer patients still need palliative care as part of their comprehensive care. The Institute of Oncology Ljubljana, recognized as an ESMO Designated Centre of Integrated Oncology and Palliative Care, has a 16-year tradition of specialized palliative care. Today, the institute can offer several different services according to the need of an individual patient. The structure of palliative care is as complex as the needs of the patients. The mission of the Institute of Oncology Ljubljana is to provide the best possible support network for patients with palliative care needs and to support their relatives. At the same time, we are aware of the responsibility to share and spread our experiences and knowledge to other areas, to nononcological palliative patients, and to patients in all regions of Slovenia.