Antonia Engelke: Dear Mrs. Hennemann, Thank you very much for taking the time to give this interview about the Hospiz an der Lutter. You have been working at this Göttingen institution for many years and are deputy director of the inpatient area.
Sylvia Hennemann: Hello Antonia, I am amazed at your extraordinary interest and am very much looking forward to your questions.
Antonia Engelke: How many guests do you look after here at the hospice, and how long do they stay on average?
Sylvia Hennemann: We look after 10 guests, usually for weeks, some for months.
Antonia Engelke: Are any places ever available, or do you have to keep a list of interested parties due to the high demand?
Sylvia Hennemann: There are no free places, so we keep waiting lists for guests who want to come to us urgently and those who have more time, planning can be improved. Sometimes, it is difficult to identify the guests who fit into our hospice compared to those who are better off in palliative care, for example.
Antonia Engelke: What is the average age of the guests?
Sylvia Hennemann: It varies. On average, I would say around 60-70 years old. We also sometimes have a lot of younger guests as well as very elderly ones. Nevertheless, the average age is around 60 years.
Antonia Engelke: Who comes to you? What underlying illnesses are common?
Sylvia Hennemann: All patients come to us as guests, often patients with chronic obstructive pulmonary disease or cancer. There are no absolute exceptions. Of course, we cannot offer technical medical treatment procedures such as ventilation as a hospice.
Antonia Engelke: How many employees work here? How do you share the workload between full-time and the voluntary staff?
Sylvia Hennemann: We have 27 employees working different hours, 27 nursing staff. We work in three shifts. There are always three employees on the early shift, three on the late shift, and two on the night shift for ten guests.
Antonia Engelke: Who bears the costs?
Sylvia Hennemann: The health insurance companies cover the costs at agreed daily rates. We also have a circle of regular donors.
Antonia Engelke: Is there a difference between the guests here at the hospice and the patients on the palliative care ward at the University Medical Centre? Are there any medical exclusion criteria for a stay at the hospice?
Sylvia Hennemann: Certainly, some patients are better off in palliative care, especially if they require special medical therapies.
Antonia Engelke: Can relatives stay at the hospice? Are guests allowed to bring pets?
Sylvia Hennemann: Yes, relatives can explicitly live here and sometimes do so for months, doing nothing other than accompanying their loved one. This frequent with women who feel obliged to their marriage vow. Men do not always have this strong sense of duty.
Antonia Engelke: What role does contact with relatives play for you? What do you think is particularly important when it comes to supporting relatives?
Sylvia Hennemann: The relatives are as important to us as our guests. Of course, they have to be accepted by the guests. Many want to be with us but are not accepted by the guests. After all, we say guests and not patients. In such a situation, we have to intervene. But basically, we work very closely with their next of kin because hospice staff are only there at the end of life. The life that took place before the hospice is very important. Next of kin contribute invaluably, for example, to give information on favourite food, water temperature for personal hygiene, etc. The relatives usually know best when the guests can no longer speak. It often happens that guests can no longer express themselves.
Antonia Engelke: Two-thirds of Germans don’t want to be alone at the moment of death. Is that why relatives often put themselves under pressure? And is it often the case that people die when they are completely alone?
Sylvia Hennemann: Yes, often guests pass away alone when their relatives are not in the room for perhaps 20 minutes.
Antonia Engelke: Do you stay in contact with the relatives even after the guest has died?
Sylvia Hennemann: Yes, sometimes intensive personal contact is maintained, which leads to relatives also wanting to choose this last path for themselves or to longer personal contact being maintained. There are also the annual memorial services for relatives, which are always well attended and therefore fulfil an important function.
Antonia Engelke: What happens if someone has lost contact with relatives? Do you advise them to possibly reconnect, and is reconciliation often possible?
Sylvia Hennemann: We are here to listen and talk to the relatives. However, we don’t comment on this situation because it is often events that happened a long time ago that have led to problems. First and foremost, we respect the wishes of our guests.
Antonia Engelke: How important is it to bring personal belongings, including furniture, etc., when guests come to the hospice?
Sylvia Hennemann: Yes, that is indeed very important. You can bring your own furniture if you have enough space. Everyone should feel really comfortable here. Some guests also bring their dog or bird with them. Cats don’t like to stay indoors, so they are often a little more difficult to accommodate here.
Antonia Engelke: Do you help to fulfil last wishes (e.g., seeing the beach one last time, eating asparagus one last time)? Do you work together with appropriate organisations?
Sylvia Hennemann: Yes, in the event that special meals are requested, we try to realise this in-house. Well, we would buy sushi, for example. But to talk about the excursions, there is the Malteser Hilfsdienst, which has what is known as a ‘wish waggon.’. This ‘wish waggon’ comes with two volunteers (this must be registered in advance, and the family doctor must agree), and then it may be that the guest travels to Travemünde again. This is then a day trip without an overnight stay, which cannot be provided by the Malteser volunteers who are there. You might then set off at 5.00 a.m. and return at 10.00 p.m., having spent the day on the water.
Antonia Engelke: How often do hospice guests leave the hospice to return home again?
Sylvia Hennemann: It does happen, but it is then unclear whether they will return to the hospice when they are better. However, as a last wish, this is, of course, respected in the same way as a trip to the seaside.
Antonia Engelke: What rituals have you established when a guest has died?
Sylvia Hennemann: Yes, we have a few rituals, including a memorial book, for immediate entry of the guests when they come to us their date of birth – and when they die. No address or other personal details are entered in the book. The relatives have the opportunity to design another page themselves, for example sticking in a picture, or something similar. We also have a memorial candle. This is the only candle that is allowed to burn in this house in accordance with fire safety regulations. We light it in the corridor. We also light an electric candle in the room of the guest, who is then given special care and dressed according to their wishes or the wishes of their relatives. For example, if they said they don’t care, we ask the relatives. Then the guest is laid out. We ask the relatives if they would like a blessing to take place. We usually call in our chaplain. Still, any of us could do that.
Antonia Engelke: How long does the deceased stay with you after death?
Sylvia Hennemann: The guests stay until they are called by the undertaker. They are not taken to the pathology department, as is usual in hospitals, but remain in the room where they died and are laid out. There, the people who were dear to them can say goodbye. The undertaker arrives at some point, usually the next day. The deceased may stay with us for a maximum of 48 hours. It’s usually a day that passes. Our employees also want to say goodbye.
Antonia Engelke: What role does the Christian orientation of the hospice play in practice? How do you deal with guests of other faiths or non-beliefs?
Sylvia Hennemann: As a Christian hospice, we have clear principles and treat our guests and their relatives with respect. We respect the religion or denomination. Members of other religions, such as Muslims, are quickly prepared and transferred to the University Hospital across the road, where appropriate specialized personal care is available.

Living and dying in a hospice

Antonia Engelke: Many people associate a hospice with pain, fear, sadness, and a consistently gloomy mood that covers the atmosphere like a veil. Are these dark thoughts justified? Can you describe living and dying in a hospice in a few words?
Sylvia Hennemann: Colorful; and very imaginative. Yes, I could actually say that. I just had a visitor this morning who asked exactly the same question. We cannot anticipate what to expect each day when we arrive at the hospice.
Antonia Engelke: Is a person’s decision to go to a hospice or the decision of relatives to end care at home also associated with fears of failure and feelings of guilt?
Sylvia Hennemann: No, not from my point of view. Nowadays, many people are also prepared when they come to a hospice. Of course, it’s always a farewell from home. From loved ones, or even if you are transferred to us from the hospital or from the palliative care ward, you first want to go home again per se. But that’s not the case. We are a substitute for home, trying to serve as well as possible. We enquire about the wishes from the outset. We involve the relatives right from the start. They can also personalize the room before the guest comes to us. We always ask: “Would you like to come? You can bring whatever your favourite thing was from home. You can also move in yourself.” This is very important because many people don’t want to say goodbye again if they have been married for a long time. If they want to be with them until the end they move in. At present, we have many, many people who accompany their loved ones and live with us permanently.
Antonia Engelke: In your opinion, what is the best way to give seriously ill people a better quality of life?
Sylvia Hennemann: By fulfilling their wishes.
Antonia Engelke: What role do guests’ preferences play in everyday hospice life, e.g., the preparation of favorite dishes, etc.?
Sylvia Hennemann: A major role. It is very important to know and respect special preferences and to fulfil wishes.
Antonia Engelke: Do you discuss details about the funeral with the guests, or is there a desire for such conversations more often or less often?
Sylvia Hennemann: More often, I would say. Sometimes everything is already clarified before someone comes here, but when it is, it is discussed openly, so everyone knows that they will pass away here at the hospice. And with this certainty, it’s a clarity that doesn’t need to be glossed over. That’s why people are more open about it. I’ve always really appreciated this openness.
Antonia Engelke: How important are conversations about the end of life, the meaning of dying, about fears, but also perhaps about the satisfaction of a successful life?
Sylvia Hennemann: Very important. We also offer psycho-oncological counselling. We have two employees who received specialised training, so sometimes we really go into detail here. We also offer dignity-centred talking therapy. One of our employees writes a biography book. This is transcribed, and the relatives are later given a bound copy.
Antonia Engelke: How does caring for young people differ from caring for old people in a hospice?
Sylvia Hennemann: That is a very good question. We very often come up against our limits here, too. At present, we have a very young mother with two small children. We also have another young woman who does not have children is unmarried and very closely supported by her mom. Yes, young people, how do we deal with them? The younger the guests are, the more openly we try to deal with the situation. In my experience sometimes it is still difficult.
Antonia Engelke: Are there many people in the hospice who die ‘full of life,’ who have said goodbye and discussed things with their relatives that needed to be discussed?
Sylvia Hennemann: Yes, there are. Those that we actually ‘just’ accompany. They are accompanied until the end of their lives, but they have actually already organized everything; let’s put it that way. Yes, they have already organized everything that can be organized.
Antonia Engelke: In your many years of professional experience, have you noticed that guests can sense when death is coming?
Sylvia Hennemann: Yes. Yes, people do sense that; I have noticed it not only here but also elsewhere. Exactly; there are signs. Some people fidget with their hands, become more restless, and have an increased pulse rate. You can also sometimes recognize this from the vital signs. (Nods)
Antonia Engelke: Is there a way in which relatives can best prepare for the farewell?
Sylvia Hennemann: Hmm, also a good question! I do not think anyone knows the best way. Everyone has to find out for themselves, what they need to say goodbye. It can be different for everyone.
Antonia Engelke: You have accompanied many people on their final journey. In your opinion, is there such a thing as a beautiful death?
Sylvia Hennemann: Yes, a beautiful death is when I am not alone — that is usually the case here. No one is alone here — there are three wishes that our guests express time and again: I don’t want pain, I don’t want shortness of breath, and I do not want to die alone. And these three important points are usually fulfilled here.

Dealing with death personally in the context of work

Antonia Engelke: What do you value about your job? What do you find enriching?
Sylvia Hennemann: Well, I became a nurse, completed my training 1981, and enjoyed the profession from the very beginning. I have worked in many different areas: in outpatient care, in hospitals, now here in the hospice, in SAPV, and in special outpatient palliative care, and I have enjoyed everything very much.
Antonia Engelke: Is working at the hospice also a burden for you personally?
Sylvia Hennemann: For me personally it is a burden – hmm, yes, the young patients; the young guests who are with us and die. Sometimes it gets so close.
Antonia Engelke: How do you manage not to symbolically ‘take your guests home with you’?
Sylvia Hennemann: Yes, I sometimes take the young (laughs) young people home with me. Yes, of course I do. I also do yoga and have a large circle of friends and can talk to people. We have supervisions, which is also very important: we can also discuss things that are bothering us with the supervisor. Yes, and we have a great team. The supervision is every 4-6 weeks, but the team is always there. And we are different personalities. We contribute our individuality to the diversity.
Antonia Engelke: How are volunteers prepared for their work in the hospice? What prerequisites should they have?
Sylvia Hennemann: They are prepared on a specialized course with us. Our outpatient hospice organizes its own training. There are twelve evenings of 2 hours each, totaling 24 hours. The prerequisite is the desire to care for people and to fulfil their wishes at the end of their lives.
Antonia Engelke: Have you noticed a change in yourself or your employees that could be due to your work at the hospice?
Sylvia Hennemann: Oh yes. I have noticed that I am becoming very modest some call it humble. When I was away on holiday for a long time, I sometimes got upset about little things. As soon as I was back here, I immediately recognized the important things again. There are much worse things, and then you become very – humble. You become grateful for what you have.
Antonia Engelke: If you personally found yourself in a situation where you soon had to say goodbye to a loved one, would you want your loved one to die in a hospice, in a hospital, or in their own home?
Sylvia Hennemann: In their own home (smiles).
Antonia Engelke: Can you describe an encounter with a dying person that particularly touched you?
Sylvia Hennemann: Yes, when people pass away whom I have cared for intensively and who then pass away in my presence, I always feel grateful. I always tell myself that they chose me. He had enough faith that he could let go of his life with me. And, that’s actually – that is where I receive gratitude.

Hospice work and palliative care in the public eye—current situation and outlook

Antonia Engelke: According to the INSA opinion poll, every second German is afraid of dying. Why is this the case, and does this fear shift to your guests’ relatives, who live on and remain alone?
Sylvia Hennemann: That is an important question. We have observed that fear of the unknown is the most common motive and that we can relieve patients of this fear with our care and the right therapy. The relatives often decide to return to us at a point in time as result of this experience.
Antonia Engelke: Does the hospice’s public relations work help to remove some of the taboos surrounding death?
Sylvia Hennemann: Yes, we believe it does. Our regular hospice information booth in Göttingen’s pedestrian zone certainly has a major influence in this respect.
Antonia Engelke: How do you personally feel about assisted suicide? Are you sometimes asked to do this, and how do you deal with this request?
Sylvia Hennemann: Oh, this is a real difficult subject. Assisted suicide. We have already had a big event that addressed many different opinions on this topic. My very personal point is: I do not think it can be implemented here at the hospice because it contradicts our works ideals. We actually try to go the natural way with the guest to the end. So, everyone should experience as much time as they have been given and if I were to end someone’s life prematurely, let aside the complicated legal aspects it would certainly be a kind of failure for me personally if we weren’t able to fulfil all the wishes of the person concerned and alleviate their symptoms. You could just call it “poor practice”, but it would certainly be much worse for me. Of course, there are people who express the wish to die quickly and as soon as possible and to end their lives, but once they have lived with us for a while — the pain is gone, there is no shortness of breath, and, above all, there is company — three factors that can result in the wish to die. I do not think it is feasible – and necessary – for us.
Antonia Engelke: Do you think that the spectrum of palliative care options is being fully exploited in Germany? If that were the case, do you think that the question of assisted suicide would even arise?
Sylvia Hennemann: I think that is what it comes down to: we so often observe that patients become more accessible and happier again once their symptoms have been alleviated and they are not alone in their care. Suddenly this question is no longer an issue. For me it has always been out of question, that there is this direct link to adequate therapy and care.
Antonia Engelke: Is it possible to completly control the symptoms of pain and nausea, for example?
Sylvia Hennemann: Often yes, mostly to a large extent.
Antonia Engelke: How do you weigh up pain relief therapy and sedation?
Sylvia Hennemann: ‘Firstly, it is important to get the guest as pain-free as possible. There is a stepwise sedation program which, when used correctly, can be a blessing for guests.
Antonia Engelke: Is there a difference between the fear of dying and the fear of death?
Sylvia Hennemann: Yes, yes, exactly. The path to death, dying, is a dying process. Some people are afraid of that.
Antonia Engelke: Is the sentence “We die as we lived” true?
Sylvia Hennemann: Hm, not always when I am thinking of a guest we had. He was a bachelor who came to us very thin and emaciated. He was a smoker and around 65. Sometimes he liked to drink a beer. We allowed him to do all of that. Then he switched from beer to coke and did not eat anything anymore. He lived with us for another three months, and he still really enjoyed living with us, without relatives, without friends, and was stranded here, so to speak.
Antonia Engelke: A children’s hospice is being built in Göttingen. Will there be a collaboration?
Sylvia Hennemann: We have already been in contact with the children’s hospice in preparation. However, the groundbreaking ceremony has not yet taken place, so it does not make sense to be in constant contact, for the time being. For us, this provides a potential starting point for guests with children, who could then take advantage of the children’s hospice’s bereavement services so that they can be helped to a better standard there.
Antonia Engelke: What do you personally hope for the Lutter hospice and for hospice work in general?
Sylvia Hennemann: Many people who can deal openly with the subject of death and dying.
Antonia Engelke: Ms. Henneberg, thank you very much for this friendly conversation and the valuable insights into the Lutter hospice.