What actually happens in the dying process? How do you know when to call a doctor and when is it important just to hold someone’s hand? What are the rights of a dying patient?
When coming in close proximity to death, many of us feel perplexed and helpless. That is why Dr Georg Bollig came up with the idea of “last aid courses”. He is Clinical Associate Professor in Palliative Care at the University of Southern Denmark and a senior physician at a palliative care unit.
The courses are primarily about giving relatives caring for a dying person the necessary knowledge so they can assist the terminally ill as adequately as possible. It is also important for carers themselves to gain security and confidence in that what they are doing is right.
In 2015, Bollig gave his first last aid course in Schleswig, Germany. Since then, his concept has spread to many European countries and, most recently, to Australia. So far, 25,000 people have attended last aid courses around the world, and over 2, 000 trainers have been trained to run these courses.
Principles of humane dying
The idea behind last aid courses is to promote a humane way of dying: the basic principle is that even in the last phase of life, everyone should be provided with the best possible care, preferably at home or in a familiar environment, and with the support of their relatives.
At the courses, experienced hospice and palliative care staff generally provide lessons around four key concepts: dying is part of life; providing and deciding; alleviating suffering and saying goodbye.
According to Bollig, it is important for the courses also to address the normality of dying as part of life.
“Together we consider how to say goodbye and discuss our options and limits. As with first aid, last aid should convey knowledge about help and humanity in difficult situations.”
The courses are deliberately short and compact – just like first aid courses, Bollig emphasises.
“Everyone should be able to participate and learn the basics. This is tangible information that anyone can use and implement,” he says.
The use of Last Aid Courses is evaluated every two years for each country. A recent study showed that the courses are well-attended and people’s feelings about the courses are overall very positive.
Planning and clear rules help with guilt
Most of the people attending last aid courses are caring for relatives who are terminally ill, but Bollig would like to see death and dying become less of a taboo for people of all ages. That is why last aid courses for children and adolescents are becoming more and more frequent.
“They are a lot of fun for everyone involved – in our experience, it would be beneficial for this topic to be taught in schools and also in adult education. I believe that way death, as an unexpected event, could be better understood.”
Together we consider how to say goodbye and discuss our options and limits.
But do these courses also benefit those dying? This question is difficult to answer, as it is impossible to ask those who are already deceased about the quality of their last moments. However, with more knowledge and discussion about death and dying, the path to the other side of life is probably easier to go through, Bollig believes. He is currently planning a long-term study about the experiences of those dying.
Bollig also finds the ethical and legal questions related to death extremely important to discuss. Who can determine what happens to people when they are no longer able to decide for themselves? When should the machines be switched off?
The professor stresses that is good to go through these complex questions sooner rather than later, because you never know when you might need to make big decisions. “With clear rules that are set out in good time and in writing, some feelings of guilt can be alleviated.”
Dealing with pain requires openness
The course instructors for last aid courses are trained on one-day courses in accordance with Georg Bollig’s specifications. To qualify to attend training, people must have had previous experience in adult education and in work in a hospice or palliative care.
Bollig would like to see death and dying become less of a taboo for people of all ages.
One of the professionals providing last aid courses is Boris Knopf, a trained palliative care nurse who works at a so-called “dignity centre” in Frankfurt.
In contrast to normal educational events, at last aid courses participants are often emotionally involved and stressed. Talking about death always touches on a very painful side of human existence, Knopf says. He believes that the best way to deal with this in educational practice is openness.
“When there is a grief reaction, we try to support the person concerned and respond to it together. There is a culture of care on the courses. If more help is exceptionally needed, one of the course leaders leaves the room with the person concerned. That is why there are always two course leaders.”
Part of the concept is also to reserve a lot of time after each training session for questions and reactions that might come out.
“During the course, complex questions such as the wish to die or help with suicide are addressed but not dealt with more deeply. Four hours is too short for that. But anyone can openly talk to me about these topics afterwards,” Knopf explains.
Death Cafes deepen the conversation
For those who want to continue and deepen the discussion around the end of life, the dignity centre in Frankfurt also offers so-called “death cafés”. The concept was developed in London in 2011 and now there are death cafés in 71 countries.
When there is a grief reaction, we try to support the person concerned and respond to it together.
Death cafés are scheduled non-profit get-togethers that can also take place in someone’s house, for example. The cafés can be organised by anyone who adheres to the rules and is willing to speak freely about death.
Dorothee Becker runs a death café in Frankfurt. She moderates the meetings at which anyone can bring up a topic for discussion.
“There is sometimes crying and often lots of laughter. Sometimes local pubs even ask to host our gatherings,” she explains.