Skip to 0 minutes and 9 seconds Tubingen is in the Baden-Wurttemberg region of southern Germany. It is an historic city on the river Neckar. Famous for the boats which punt along the shallow river. It hosts one of the oldest universities in Europe, which dominates the town together with its castle. The Tubingen project is based at the Paul-Lechler Hospital, set on a hill with panoramic views of the city. The Palliative Care Initiative serves the city of Tubingen and the surrounding area, with the nearest hospice 40 kilometres away. The basic aim is to care for the people in heavy illness and in the face of dying at home. But we care for the people also in the early stage. So we also do early palliative care.
Skip to 0 minutes and 55 seconds And I think that’s one of the special things of the Tubingen Project that we care in all phases of palliative care. We are a project with nurses which are specially trained as palliative care nurses, and about 10 nurses and three doctors also trained in palliative care medicine. And we take care of patients staying at home with mostly oncological diseases with a very limited prognosis. If these patients get symptoms like pain, or vomiting, or shortness of breath, we will take care of them. Not everyone works full time with the project, but assists the team. My task as a physician, we are doing on-call duty. I am doing this in blocks.
Skip to 1 minute and 56 seconds For example, this week I am working the whole week for the Tubingen Project. This means I join the palliative care nurses when they are visiting the patients and caregivers, adapt the treatment doing symptom management. These are my tasks, doing a lot of phone calls, and a lot of documentation, and if necessary, I also do home visits driving to the patient’s house doing symptom control. The team works very well together to deliver personalised home palliative care, which the consultant explains. What I can say what the patients are very satisfied with us is that we are pretty fast. So if you call us, we will come, in most cases, within several hours at home to your house, your surrounding.
Skip to 2 minutes and 52 seconds The pain management, the symptom control, in most cases, depending on what it is, works pretty well. There are more or less no limits in therapy. So we can do pain therapy. We can treat vomiting. We have a lot of contacts. And we take time for our patients. So when we go there, we will take, in most cases, we will need at least an hour, sometimes one and a half in the first contact to really get an idea of who is this person. We are not people who are just interested in getting rid of the symptom, but we are interested, who is this patient? Who are his family? How do they communicate within each other?
Skip to 3 minutes and 45 seconds So we try to get a most complete picture of our patient. Time and the personalised approach were key factors described as important when we spoke to Paulina, whose father had died relatively recently, and could see the difference the Tubingen Project made to him and his family. It was a very personal care of patients there. You can talk to anyone anytime you want to. You have the telephone numbers of them. You can contact people any time you need their help. And there will be a very quick reaction. So there is a difference. There are not that long waiting times.
Skip to 4 minutes and 30 seconds And there is not this big stress of trying to still rescue your life, because this is what they do at the clinic, to just need care and people who look after the person. So it was good. We have 24 hours helpline. And the people can call us at any time, because the GP is only during day retrieval. And so the other times they may call us and we try to give advice by phone. But if we think it’s necessary to go personally to the patient, we also go there, even at night. For example, if a patient is dying, we go there and we try to support the family and the carers at home.
Skip to 5 minutes and 27 seconds I think the most important skill is to develop relationships, and to establish an intensive relationship in a short time. Because dying is a very intimate process. And in our main task is to build up close and intimate relationship in a short period of time. I think this skill is needed by a person who is engaged in this field of palliative care, because we are getting involved in the family very deeply. And this is only possible if you are able to build up relationships very quickly, a very intimate relationship because of the situations, but also to be able to leave the family if they don’t feel they need the support anymore.
Skip to 6 minutes and 17 seconds It is easy for patients to get referrals to the service. This is vary differently. Sometimes patients just call us directly and ask for help. Sometimes it’s the relatives which call us, take contact with us. Sometimes it’s their doctor at home which is trying to help them. Sometimes he has questions and ask us to come to them. Sometimes the colleagues at University Hospital here in Tubingen– we have a huge university hospital here– and they call us before patients go home. So there are multiple ways of getting in contact with us. The main team of nurses and doctors is supplemented by the work of volunteers, which one of the nurses explains here.
Skip to 7 minutes and 11 seconds If we recognise needs for support, because there are no resources to provide 24 hours home care, for example, we try to consult a volunteer service. And there are the hospice volunteers, then we try to include them. And we have a very good and intensive contact, which means if we call them they come immediately. I think this works excellent. Volunteers are important pillar of our work. We met with one of volunteers from the Tubingen Project. And she explains the kind of work she does. Usually these patients who are the severely ill, and also their relatives, are very overburdened by all the things they are confronted with. They get a lot of information.
Skip to 8 minutes and 1 second They are in pain, fearful, and have unknown people coming to their home constantly. Everybody wants to do something for the patient. They want to treat the pain. The physician wants to discuss something. Maybe a speech therapist joins and wants to do some exercises, a physiotherapist. We can help. The relatives are often overburdened in these situations and are running out of strength. We are often to listen to them, talk to them, hear their sorrows and needs, and relieve your burden for a bit. We are here for your beloved. And you can go for a walk, take a shower, go shopping, or to the hairdresser. For those things, there’s often no time left. And we are there.
Skip to 8 minutes and 49 seconds The volunteer chose to do this work out of similar motivations to the other volunteers we met across Europe. The motivation is diverse. One aspect is that I want to take part in the community. And I help it to function properly. We do have a lot of weaknesses in our society. And this is a part of a puzzle where I can help to improve things. Another aspect is that I, myself, have lived through crisis. My parents both had cancer and died from it. My mum at home, and had a palliative care physician at her side even in those days 25 years ago, which relieved the burden for all of us.
Skip to 9 minutes and 29 seconds My experience with my own daughter, what it is like to have to rely on people helping you if you’re afraid, if you have sorrows, and you feel left alone. Yes, those are the reasons why I want to volunteer in this field. I get the gift of listening to many stories, experiences of lives. I receive a lot of trust. And it’s a great job to talk to these people who are at this crossroad in this existential situation. And you are having conversations of a kind you usually don’t have during everyday life. These are big presents and you may use them to question your own life a little bit, and ask yourself, what am I doing here all the time?
Skip to 10 minutes and 15 seconds And what is really important? As with all projects, the team recognise improvements could be made. What I would like to improve is the contact with our colleagues. Because my idea is that we might, could come earlier. Sometimes we are called for the last two hours somebody is living. And we see we could have been helpful all the days before. So this is something I really would like to improve. And this is very slow process. It just takes time to get the trust of the colleagues, also of the families. It’s very difficult for a family to accept– also for the patient– that it’s a palliative situation. And I think there is a lot of fear also.
Skip to 11 minutes and 14 seconds If it seems that there is no hope left if the palliative care team is coming. And so many people in the beginning are kind of afraid of us. And then they luckily start to be happy with us. What we can improve is maybe to care more for patients with dementia and other diseases cardiologically diseases. And, yeah, not only for two more diseases. This would be something we could improve. And maybe to deliver more bereavement services. Because we see this very important part of our work. Already we try to keep in touch with the relatives after the dying of the patient, but in a very limited way. We make one visit more or some calls more.
Skip to 12 minutes and 13 seconds I think bereavement service is a very important part. Sometimes it isn’t possible for patients to remain at home, particularly when they have complex symptoms to manage. However, they work closely with the palliative care unit, maintaining continuity of care. We didn’t know how to handle it. So Dr Paul decided to take him to the hospital for the last night before he passed away. Because he had some quite difficult symptoms, didn’t he? Yeah, which we didn’t know how to handle. So Tubingen Project was always there for us.
Skip to 12 minutes and 54 seconds We could describe the symptoms, tell them at the phone or they were coming here to have a look at it and then, yeah, deciding whether to leave him at home or to take him back to hospital. It was not the first time. There were a few other times where we were giving him back to hospital and back home. And this was the palliative care unit with the same doctor, so people knew him? Yes, yes. It was people whom we knew, and also people who knew him. So it was very like home atmosphere. And it was very calm. You didn’t feel the University Clinic stress.
Effective practice in palliative care: an example from Germany
As Week 3 comes to a close, we present two final examples of palliative care services in Europe.
This week’s first example is the Tubingen Project based in the Paul-Lechler-Hospital in the German city of Tubingen.
As you watch the film, consider what you think are important features in this service example.
You can also read about Michael and Claudia’s experiences on page 21 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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