Skip to 0 minutes and 8 seconds Pecs is the fifth largest city in Hungary, located in the southwest corner of the country, close to the Croatian border. It has a population of about 150,000 people, who are mainly Hungarians. It is an historic city, which gained World Heritage status in 2000 and became the European Capital of Culture in 2010. It is dominated by its university, which is the oldest in Hungary and one of the first in Europe. It has an industrial heritage and is well known for the Zsolnay porcelain produced in its factory. The Palliative Care Initiative is in the hospital and university. Two of the team members describe the service they provide.
Skip to 0 minutes and 52 seconds The Palliative Care Service in Pecs is based on the clinical centre of Pecs that is part of the University of Pecs. And as a part of an integrated palliative care, the Hospice Home Care, Hospice Inpatient Care, Palliative Specialist Outpatient Care, and other clinics, such as Oncology, Cardiology, Pulmonology, are available for our patients. The development of integrated palliative care began with starting the hospice home care in 2004, where we provide holistic care for the patients at the patient’s residence. We established outpatient palliative specialist care in 2012. It provides care, not only for the cancer patients, but also for noncancer patients from the earlier stages of their disease. And the palliative mobile team was started in 2013.
Skip to 1 minute and 57 seconds It provides care, mainly for cancer patients, at different departments of the clinical centre. But it provides care mainly for cancer patients at different departments of the clinical centre. The main tasks are psychological support, symptom management, improvements of the quality of life for the patients, and finally, organisation of further services for the patients. There are a variety of ways patients can be referred to the service. There are several ways how patients can be referred to the service. We can be contacted by the specialist doctors, GPs, family members, and even by the patients directly. After recording the necessary data, the patient can receive this care and then the appropriate caregivers can be appointed according to the patient’s needs.
Skip to 2 minutes and 45 seconds There are well-established systems for keeping up to date about what is happening to patients receiving the service. In the clinical centre of Pecs, we have an online database where we can follow the patients and what kind of treatment examinations they have. And we are in phone contact with each other. And the GPs are informed about their patients by the specialist doctors’ reports. And in the hospice home care, we have weekly meetings where we discuss the cases of the patients. But we are in phone contact with the GPs as well. However, most patients who hear about the service have cancer. But we spoke to a patient with a neurological condition, who was receiving treatment from the team.
Skip to 3 minutes and 37 seconds I have heard about this service by chance. I was diagnosed by polyneuropathy in 2011. Then I have been treated with different medications and methods. Finally, I was told that my disease is not curable. I had very severe pain during the treatments. And after that I went from doctors to doctors. I was also at the pain management outpatient clinic, but they couldn’t relieve my pain. I visited my GP regularly. And one time another young doctor was in her office, and she recommended the palliative service for me. The service works well in some aspects. It’s integrated into the active service. Furthermore, it works as a multidisciplinary team, and it’s helped change the attitude of clinical doctors and nurses.
Skip to 4 minutes and 33 seconds And the number of inpatient days can be reduced, too. The service is provided in the patient’s home that improves or maintains the patient’s comfort level. There is a flexible and effective cooperation between the team members. There are no unnecessary referrals of the patients. The strength of the team, in particular, was recognised by the GP and the patient. The team is great. So there’s a coordinator– who is a nurse, anyway, a fully qualified nurse whose full-time job is in the hospital. So he’s really well-trained and very, very good nurse. And there’s a separate nurse with the palliative care nurse who can go to the patients even every day if necessary.
Skip to 5 minutes and 23 seconds And there are a couple of volunteers who just go over and chat with the patients. And it is very good. Basically patients sometimes need that more than doctor’s care or medical care. It is different in many ways. I just realised that there are illnesses which are out not curable, and after some time I realised that doctors can’t offer further treatment, which is difficult for the doctors and even more difficult for the patient. In palliative care, the goal is not to cure, but to relieve symptoms as much as possible and minimise suffering. The other important element is the psychological support which is provided by the palliative clinic.
Skip to 6 minutes and 16 seconds I feel that they listen to me and they want to help and support and relieve my symptoms. They take into account the patient’s personality and need to relieve my pain, which resulted that I can live my life and carry on most of my daily activities. Once the GP has responsibility for patients, when they receive palliative care, this has largely fallen to the doctor in the palliative care team. In my opinion, every members of the team has to take some responsibility for the patient. But I think the palliative care physicians has the largest responsibility. However, the physician also recognised that improvements could be made. There are several things that should be improved.
Skip to 7 minutes and 5 seconds For example, hospice home care and hospice inpatient care are available only for the cancer patients in Hungary, because of financing problems. Underfunding is a large problem in Hungary, and I think that we do better reimbursement. Non cancer patients’ groups can be involved in hospice care. Another problem is the huge workload of the professional caregivers, because most of them have more than one job at the same time. And they have to be worker on several places. Compared to the needs, there are few psychologists, nurses, doctors qualified in palliative care. Another problem is during the out of period, only urgent care system and ambulance service are available for cancer patients.
Skip to 8 minutes and 5 seconds And I think palliative care can be improved by establishing 24 hour dispatcher services and duty for home care. The team also includes volunteers. As a volunteer, I visit the patients, help with the grocery shopping, work and chat with them. As far as I see, they appreciate the conversations the most. Many topics come up. They laugh a lot. For me, it is important that we talk about the things that matter the most for the patients. This depends on the situation and on the persons as well. Usually we meet once or twice a week. Until now, I have volunteered at the Irgalmasrendi hospice on a weekly basis as well.
Skip to 8 minutes and 56 seconds Here also I’m helping the patients to walk, to eat, or we simply talk beside their beds. The volunteer had become involved following a personal death, and showed great dedication in what she did. My grandmother passed away a few years ago. And after a deep period of grief, I soon realised that there was a huge need for people who deal with the patients, not in a medical, but in a personal way. It’s important to spend some hours together talking about things which are not related to their illness. In today’s busy world, it’s important to give something to help someone else. I give my time, my attention and myself.
Skip to 9 minutes and 39 seconds This work takes its toll, and the volunteer recognised support was needed for them. It would be great and useful if there was a platform for volunteers to discuss their experiences and to exchange opinions, thoughts and feelings. Personally, I believe it is important that, as a member of the community, I should know where the people with whom I work together, there should be a way to know more about their feelings or even their problems. All of us who work and volunteer in this field, live together with a feeling of loss in the last few days. No matter what we say or think, this is very difficult for our souls.
Skip to 10 minutes and 20 seconds That is why it is important to loosen up, fight against the pressure, and find time for recreation. With Dr Csikos we plan to create a programme which aims to have the spiritual and physical recreation of those who work in hospice. Whilst this service is developing, there is still a long way for palliative care services to grow across Hungary. Interestingly, the patient we spoke with expressed the need to develop palliative care and was an advocate for the service. A lot needs to be developed. I think the majority of people haven’t heard about the palliative care, except maybe patients with cancer diagnoses. Because most services are available for cancer patients.
Skip to 11 minutes and 5 seconds I was surprised that even many of the doctors didn’t hear about palliative care either. There isn’t enough information and knowledge about palliative care. It is even hardly recognised as a specialty among doctors. In my opinion, the most important would be to provide more information to the public as well as to professionals. It would be needed to have inpatient palliative beds in every bigger clinic or centre, or at least beds available in hospitals for patients whose symptom management requires more closer assessment and follow up.
Skip to 11 minutes and 47 seconds But I don’t see that this could be realised in the near future. It would be even more important to well inform GPs during educational sessions, conferences or professional meetings.
Effective practice in palliative care: An example from Hungary
This next example of effective practice in palliative care comes from Hungary.
This initiative is based within the Clinical Centre of Pécs which is part of the University of Pécs.
As you watch this film, consider what you think are important features in this service example.
You can also read about Yvolya’s experience on page 29 in Integrated Palliative Care.
Further examples of integrated palliative care across Europe are available in the free book which accompanies this course (see ‘Downloads’ section at the bottom of this page).
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