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“We want to help patients until the end to achieve the best possible quality of life or to maintain it.“
Palliative Care: “We want to help patients until the end to achieve the best possible quality of life or to maintain it.“
Katri Elina Clemens; © private
If you receive the diagnosis of a disease with a high probability of death, it feels like you are standing on the edge of an abyss. Palliative health care professionals attend to critically ill patients until the end of their lives, so they will not fall into this abyss.
MEDICA.de met with palliative health care professional Doctor Katri Elina Clemens from the Maltese Hospital in Bonn during the 9th Health Symposium in Petersberg titled “Palliative care –Alliance of reason, mind and emotion.” We talked about the current extent of palliative care in Germany, what the specific requirements are, and where improvements must be made.
MEDICA.de: Doctor Clemens, the first palliative ward was set up in 1983 at the University Medical Center in Cologne. Many other facilities – outpatient as well as inpatient – have since followed. Was palliative care during this time able to establish itself to the point where patients in need of this care today, immediately know that they can receive this type of help?
Katri Elina Clemens: Unfortunately, it has still not happened all over the country, although many people from the Cologne-Bonn-area are informed about us. Quite often though, patients tell us that they found out about palliative care by chance. This means that for many, especially in the beginning of their disease, the possibilities and services of palliative care are completely unknown. We often hear the sentence: “Oh I wished I had known about this sooner.“
MEDICA.de: Already in April 2007, the law was set up to get palliative care underway. Health insurance companies were obligated to ensure nationwide provision. Yet the guidelines have thus far only partially been carried out. What exactly does this mean?
Clemens: This means, that palliative care provision in Germany is still not sufficient. That is to say more precisely: There are too few palliative wards available, as well as too few physicians and nursing staff trained in palliative care. Although this number continues to grow especially in major cities, the quantity is still too low.
MEDICA.de: This means it might happen that people who live in the country side, have to drive to the next major city to receive adequate palliative care?
Clemens: This might definitely be the case. Especially rural regions are struggling with the fact, that care cannot directly take place on-site. In fact, this often pertains to all areas of medical health care, but especially in this area, you realize the importance of outpatient palliative care. It absolutely needs to be increased and built up, to guarantee fast basic care.
MEDICA.de: The keyword palliative care immediately makes you think about cancer patients, who are taken care of and who actually make up a majority of patients. To what extent can experiences with this group of people be conveyed to others?
Clemens: Actually, at first we mostly treated tumor patients and alternately patients with neurological disorders in our palliative wards: It needs to be clearly stated that 90 percent of our patients suffer from cancer. However, in the future certainly more patients with other, incurable diseases will be able to receive treatment through palliative care. We will continue to open up to this area, but we need to make sure that sufficient capacities will be available. At the moment, we are unfortunately not able to offer it. At the Maltese Hospital for example, we currently decide on an individual basis, which patients are allowed in the ward. That said, the number of patients coming to us is increasing, even if they do not suffer from a tumor.
MEDICA.de: How did you decide to work in palliative care?
Clemens: I worked in the anesthesia ward, lead by Professor Klaschik, the first endowed professor for palliative care and head of the first palliative ward in Bonn. He was also a former team member of the first nationwide palliative ward, which was established in 1983 in Cologne. Through him I learned about this interesting field during my professional training. Ultimately, I decided to complete my residency in palliative care.
MEDICA.de: What special demands does your profession make?
Clemens: A demand or rather a challenge is certainly, that in palliative care you are not just treating an individual organ, but instead need to have a holistic point of view. For example, you strongly need to consider the psychosocial needs of the patients. You must see their relatives through this. This includes the mourning process. Overall, many different aspects have to be considered in your daily work – and this variety often presents a big challenge. Very often for example, you keep in touch with the relatives of the deceased person for many years.
To maintain the quality of life - one goal of palliative care; © Picture Disk
MEDICA.de: Do you think that medical science in general could learn something from the principles of palliative care, for instance when it comes to improving the care for chronically ill persons?
Clemens: I can only respond with a definite “Yes“. I think other medical fields could absolutely benefit from the experiences we gather in the area of palliative care – as well as they should!
MEDICA.de: The current economic situation forces many companies, also those in health care, to cutback jobs, which are actually desperately needed. Since palliative care is particularly counting on teamwork between physicians, psychologists, caretakers and other occupational groups, one needs to ask the question: In the future, can optimal care through ”Palliative Care Teams“, this being the proper technical term, be guaranteed?
Clemens: It must be guaranteed. It simply needs to be achieved, that the German health care system saves enough money in other areas. For example, you could start with the unnecessary prescriptions of expensive drugs or clinical diagnostics. Palliative care in particular is very efficient without incurring big expenses. Often we can also help to reduce costs, if we are called into treatment at an early stage. Often useless and expensive patient treatments are being conducted, which will not lead to an improvement of the patient’s situation or his quality of life. Especially the latter is an essential focal point of our work, because we want to help patients until the end to achieve the best possible quality of life or to maintain it.
MEDICA.de: Lastly one current question: In a recent verdict, the German Federal Supreme Court decided that cutting through a feeding tube does not constitute active euthanasia (medically assisted suicide), since the affected patient explicitly requested not to receive total parenteral nutrition. Thus the patient’s wish was definitely acknowledged. What did you think when you heard about this verdict?
Clemens: I thought: “Aha, now they finally get it.“ This is actually nothing new, since passive euthanasia was also not punishable before this verdict. The counterproductive aspect of this case however is, that people do not actually read the words passive euthanasia, but just the term euthanasia. Since the verdict, I already had two patients, who called me and requested active euthanasia (medically assisted suicide), commenting that this is now permitted. When it comes to euthanasia, the affected person does not differentiate between active and passive euthanasia. And that is a problem. The verdict of the German Federal Supreme Court (BGH) actually only ratifies what should not just been known for years in palliative care: passive euthanasia is possible and not punishable by law.
The interview was conducted by Simone Ernst and translated by Elena O’Meara