Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

In Germany, the greatest need is simply symptom control. We are highly deficient in just doing good pain control for those patients. Also, we actually have no place for patients whose cure-oriented treatment fails. We are not allowed to keep these patients in our hospitals. So, if surgery fails, or if pills and chemotherapy fail, we are not allowed to hold the patient longer in the hospital, and yet we do not have enough palliative care places, nor enough institutions that provide home care, and we simply have no idea what to do with these patients. We have hospices, but not at all enough. For example, in my town of Bochum, which has a population of 500,000, we have a hospice with only eight beds. I have a huge outpatient pain clinic, but I have only six inpatient beds, certainly not enough to serve those people who need round-the-clock care in a town the size of Bochum. It's impossible.

So what happens to people who are dying in pain?

What happens? They are left to the random opportunities afforded by their environment. It just depends on the family, on whether there is a pain clinician in the neighborhood, or the exceptional oncologist in Germany, who knows how to provide modern pain therapy. The problem is how to control pain at the moment because more than 50 percent of patients in the different towns in Germany are not aware of any pain clinic. They are not referred to the pain clinic. They are not contacted by the pain clinician. The home physicians have great difficulty referring patients to pain specialists because they are upset about losing their patient, and so forth.

How many pain clinics exist in Germany?

About 50, and there are about 250 pain specialists in Germany.

What, in your view, are the main issues or problems with pain and symptom management in Germany?

I think in my context, as in most others, the main problem is the lack of an interdisciplinary approach to pain therapy. By interdisciplinary, I mean that, from the point of first contact with the patient through the last period of treatment, several disciplines are involved concomitantly in diagnosing and treating the patient's pain. Pain is not simply a biological problem, but also a biosocial/psychological problem, so the diagnosis and treatment of pain should include all those dimensions, both for cancer and non-cancer pain. So, for example, at the first meeting with a patient in our clinic, I see the patient together with a psychologist, a neurologist, and a physiotherapist, and together we come to a conclusion about the diagnosis and course of treatment. This interdisciplinary approach to the treatment of pain is already accepted here for patients who are receiving palliative care, insofar as palliative medicine includes not only pain therapy, but also social, spiritual, and psychological support of the patient and family. It includes within its scope contact with the family, attention to the patient's environment, and so forth. The same should be true for every patient with chronic pain, for whom the influences from outside are certainly important to consider in making a diagnosis and planning therapy.

Is your interdisciplinary approach to pain management typical in Germany?

No, it is not typical. But it should be, worldwide.

So, your practice is innovative in that respect. How have you been able to create this atypical practice in your setting?

It has happened over time. I started as a single anesthetist doing pain therapy, and over time it became more and more obvious that whoever is performing pain therapy, whether anesthetists or interns or neurologists or whatever, they are limited in what they can do by their particular disciplinary focus on the one side, and by the complex needs of the patient, who has more than just the wish for injections or some painkillers, on the other side. It soon became obvious that pain therapy should involve more than one discipline, and so to start with we employed psychologists, and then, as a second step, physiologists and physiotherapists, and as a third step, neurologists as regular and always-present members of our pain clinic staff.

What role do nurses play on the pain management team?

There are relatively few university-trained nurses in this country, and their role in pain management teams is very limited in Germany. Although the role of nurses is certainly accepted in Germany, in general, due to lack of financial resources, pain therapy in Germany traditionally has been very far removed from nurses. That is is an effect of financial pressures, legal constraints, and educational barriers. We do not pay physicians, nurses, or psychologists separately. In Germany, we are paid per consultation or per injection. We receive a certain amount of money per visit, no matter how many clinicians are involved. This system of payment leads to different decisions about whom to engage in the care of the patient. Most colleagues do not include nurses in the outpatient treatment setting but take on the nursing role themselves. Naturally, nurses do play a role in patient care at inpatient clinics, but we do not have specially trained nurses. The nurses who work in the inpatient pain clinic are nurses from the surgical or internal medicine ward working together with us, the pain specialists.

In your setting, who does that initial assessment of pain? What sets in motion your first meeting with a patient?

It is always a physician, in our clinic or outside our clinic. By law, treatment for pain can only be initiated by a physician's order. I am only allowed to treat when another physician refers a patient to me. We have no allowance to treat when a nurse thinks interdisciplinary pain therapy would be beneficial for the patient.

This system works well, because our traditions are different from the American traditions. The position of nurses is completely different in Germany than in the United States. We don't have, for example, registered nurses. But this is changing in your direction. We are just beginning to establish university training for nurses. The first nursing professors were instituted in Germany only one or two years ago.¹

Are algorithms, or step-by-step decsion-making tools like the decision tree that the Du Pens describe (this issue's innovators), commonly used for pain and symptom assessment and management in Germany?

Yes, certainly, but more in areas outside the cancer pain arena, such as back pain, headache, or reflex sympathetic dystrophy. For cancer pain, the WHO Analgesic Ladder is more or less accepted in Germany, with some institutions discussing the implementation of steps before and after that ladder, but there are no algorithms like the Du Pens' algorithm for cancer pain in Germany.

Would it be helpful to use such an algorithm, do you think, in your country?

I think it would be helpful, but again, the situation is different from that in the United States because in Germany the different disciplines involved in the treatment of cancer patients are still fighting a little bit about who cancer pain treatment should "belong” to. The major camps in this debate are the pain therapists and the oncologists. Oncology in Germany is more or less chemotherapy and not pain therapy. So, as an example, we do not have a single university department of oncology to which a palliative medicine ward is connected. Not a single one. We have palliative medicine in Germany, but in no case is it connected to a university department of oncology. Oncologists here just focus on treating the patient in a curative sense, but not in a palliative sense.

In England, for example, the tradition is completely different. As you know, the English have several chairs of palliative medicine, whereas we in Germany have none. Certainly there is much progress needed in this area in Germany. To divide oncology from palliative medicine, in my opinion, misunderstands the actual situation of people with cancer. I think oncology and palliative medicine belong to each other and should never be divided in two different parts. Oncologists should be specialists in pain therapy as well as cancer treatment, but at the moment they are not.

How is pain managed near the end of life for patients with diseases other than cancer? For example, for patients with HIV or very elderly people?

In Germany, the public discussion of appropriate care near the end of life is still a little bit limited just to cancer patients. Certainly, the HIV and geriatric populations present situations similar to cancer patients'. With respect to HIV, that's an area where, worldwide, there are deficits in treating those patients sufficiently when they develop pain, in part due to prejudices and myths still present in the public and among the health care professionals.

What are the main barriers to good pain control in your context?

That is a very, very difficult point because it is certainly hard to understand for people who don't know the social situation in Germany. I think there are many barriers. One is that pain therapy, if performed scientifically and correctly, makes no money in Germany at the moment. To give you an example: I make my living from being an anesthetist, not from managing pain in our clinic, which runs up a fortune in deficits each year. And that is due to the fact that the services of three, four, or five colleagues all working at the same time with the same patient are reimbursed at a rate of only $10 an hour, or something like that.

Interdisciplinary pain managment is not reimbursed. What is reimbursed, and what you can live off very nicely, is making injections. But in my opinion, just to say, "Where does it hurt?” and then point to where it hurts and give an injection is not pain therapy.

Another barrier is that we have no systematic education about pain management taught at the medical universities; pain therapy is not part of our curriculum. We have ten questions about pain therapy on the exam, but no course on pain therapy as a required part of the education of our medical students. We also have no education on pain for specialists in other disciplines—oncologists, for example. So, in Germany, pain management is something for enthusiasts and not for people who have been educated properly.

In addition, legal and regulatory concerns are a very severe obstruction to providing good pain management because the prescription forms for opioids are very, very tough in Germany, the officials are very tough, physicians are penalized when we make mistakes on the prescriptions, and so forth.

Does that make physicians afraid of prescribing opioids?

Certainly. That's a big barrier. For example, we did an investigation of how pain was managed in more than 300 practices of internal and general practitioners in Germany for the years 1990–1993. Out of the more than 16,000 patients with a histological diagnosis of cancer treated in those practices, only 327 received a prescription of morphine in a period of three years. Ninety-eight percent of the patients never received any morphine over that period!

After that investigation, the German government made an inquiry to general practitioners and practitioners of internal medicine, which had some very interesting results. For example, 97 percent of the doctors said, "Yes, the WHO Analgesic Ladder is a valuable ladder, and we do need step number three [morphine] of that ladder." Some pages later on in the questionnaire, there was the question, "Do you need morphine for your treatment?" The same 97 percent said, "No! I never need morphine!" They first say, "Yes, I do accept the WHO Analgesic Ladder, including morphine," and some questions later they say, "No, I never need morphine." That is the situation in Germany among general practitioners and home physicians.

It sounds as though there's an enormous gap in practice between pain specialists', anesthetists', and the general practitioners' understanding of how to treat cancer pain in Germany.

They are centuries apart.

Is the use of morphine much more common among anesthetists and pain specialists?

It is much more accepted, certainly. However, we learned from an inquiry we made among doctors who specialize in pain therapy that 50 percent of them don't have the prescription forms to prescribe morphine. Fifty percent of the specialists!

What do you attribute this to?

They fear the legal restrictions and possible punishment for prescribing it; it is something special, and they just don't do it.

Given those circumstances, how do you explain your own quite distinct practice? What allows you to be different?

Just experience. My belief in morphine is based on many years of experience, many years of good experiences. Morphine is the safest drug of the WHO essential drug list. This is my belief. There is not a single drug in the world that is safer than morphine when it's given according to scientific knowledge . . . by the clock, by mouth, by the ladder.

What would be innovative in pain and symptom management in Germany right now?

Oh, there are many points for innovation. It would be innovative just to treat morphine as any other drug and say that everybody can prescribe it on the regular prescription form for any antibiotic or aspirin or whatever. Progress would be to accept that pain is an illness and not a symptom. Progress would be to include pain within the scope of the various disciplines, so cancer pain would be part of the focus of oncology. Back pain should be seen as an illness and not a symptom, and be the subject for neurosurgery or orthopedics, and so forth. Progress would be to generally and regularly educate students in pain, to regularly educate specialists in pain. One of the most important points for me is to establish chairs of pain, to establish chairs of palliative medicine in medical universities. For example, I have a chair of anesthesiology, intensive care, and pain therapy. That was the first chair where pain therapy was included in Germany.

How was that instituted?

I was elected as anesthesiologist to the University of Bochum. When I was deciding whether to come to Bochum, I said I would accept the position only if they would change the chair of anesthesiology to be anesthesiology and pain. So they did. It depends very much on the single person and the single initiative.

I think a few institutions in Germany have a little more experience in the development of an interdisciplinary approach to pain, as I said in the beginning. That is not generally true for Germany, but for some institutions it is true. I think that is a point where perhaps others could learn from our experience. It costs a great deal of money, time, and effort to treat pain in an interdisciplinary way, but without that, I think it's worse for the patient, for the society, for everybody. It makes more sense to treat a patient collaboratively with other specialists from the very beginning rather than consecutively.

In those places in Germany where the interdisciplinary approach to pain has been established, what has accounted for it? Is it the strength of personality of the people involved, or is it different compensation methods in those places, or what?

I think it is a combination of factors. Of course, it depends on the persons doing it, but I think more important is the clinical experience of those providers, of being involved in pain therapy over many years–and seeing not just cancer patients, because in cancer patients the problems of providing interdisciplinary care are not as big as for many other patients. For example, in patients with low back pain, you learn with experience that a somatic approach alone is almost never successful, and if you can, from the very beginning, start with what I think is the correct interdisciplinary treatment, you will be more effective and save time and effort.

So, working across the spectrum of pain presentations, not just with patients near the end of life, allows you to see an approach that works better for all.

Yes. It would certainly be true for those patients who need spiritual support, social support, and psychological support—all things that are self-evident in palliative medicine. There is no really good palliative care institution without a priest, a psychologist, a social worker, and so forth. So that is certainly true for dying patients. But the problems are more evident for the patients with back pain and with headache and with reflex sympathetic dystrophy, because the interdisciplinary approach is largely absent in the treatment of non-cancer, non-terminal pain.

Do you see any changes taking place?

I was a solo fighter some 15 to 20 years ago, and the topic keeps me fighting still. I think we will overcome the problem over the years. We've made great progress, although for you, as an American, the figures may sound very strange. But we have made huge progress. When I started as a pain clinician, I was only allowed to prescribe morphine for one single day—so the patient had to come to my clinic every day for a single-day prescription. Now we have prescription forms for 30 days. So, it's increased from 1 day to 7 days to 14 days to now 30 days, and now, in special cases, we can prescribe for even longer periods than 30 days.

I see other dramatic changes. For example, we are one of the first countries in the world with an official specialization in pain therapy. That is new and is certainly a step in the right direction, but at the moment we are disputing with the officials about where to train these specialists, in which units, and which units are certified to train them.

Would these pain specialists be affiliated with a pain clinic or with palliative care?

More likely a pain clinic. In Germany, there is a division between palliative care and pain therapy; they do not automatically belong to each other. We have specialists who exclusively do palliative care and do not treat people who are not terminally ill, but who suffer from backache or headache. And we have pain therapists who treat backache or headache but do absolutely no palliative care.

I think it would be ideal if a specialist would have knowledge in both areas, but I accept that we need to institute pain clinics without palliative care for the vast majority of chronic pain patients, those with non-terminal and non-cancer pain.

One of the things that the Du Pens and others have observed in working with patients suffering from pain, especially near the end of life, is how important the side effects of medication can be in affecting people's adherence to pain treatment regimens. Can you comment on this issue from your experience?

In our setting, we meet regularly with patients, every day or every second day or every week, until they are free of side effects and until the therapy can be followed up by the general physician at home. So, when we institute a certain therapy, which has side effects, we don't discharge the patient from the care of providers in our outpatient ambulatory clinic before the side effects are under control. We manage the pain level, the side effects, and the patient's vigilance in taking the medication as prescribed, and when everything is okay, we can leave the patient to the care of the general physician.

Do you have patients that resist taking opioids because they are afraid of becoming addicted?

Yes, certainly we have. We have made an investigation into what happened at home when we prescribed opioids to patients. The results of that study prompted our decision to only discharge the patient to the care of the general practitioner when we know everything is okay. What happened is, the patient went home, and at the first step family members said, "Don't take morphine. That is dangerous." As a second step, when this was overcome, the pharmacists said, "Oh! You shouldn't take morphine. Don't do that. I'll give you some aspirin. That is better." And so forth. So we have prejudices everywhere, with the family, the pharmacist, the patient, and the whole environment, and we have to overcome these prejudices.

How do you get the patient to believe you rather than these other people?

There is no certain procedure. It is just talking to the patient. I tell them to just try it, and if what I'm telling them is not true we can meet again next week or in two weeks, and they can tell me I was not right. So I don't think it's a problem between the patient and me; it is a problem between the patient and his or her social environment.

How do you overcome that?

As I said, by regularly meeting with those patients on an outpatient basis until we know the treatment plan is running well, and that the pharmacist, the family, and the general practitioner, who, in providing continuity of care, should prescribe morphine, are accepting of the treatment plan as well. We speak to the family, we call the general practitioner, and we call the pharmacist. We speak with the patient about his or her fears and prejudices. Then we explain the side effects and how we plan to treat them. We explain, for example, that nausea becomes less and less severe after two or three weeks of treatment. In this way, we try to enlist the patient's confidence in the treatment and how it will affect the patient's quality of life. We do not have any algorithms on this topic in Germany. We are not in the same place as you are in the United States, when it comes to cancer pain relief, but I think we are moving in the right direction. My colleagues and I wrote a piece a few years ago that still provides an accurate picture of the situation in Germany.²