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

Addressing Hopelessness in the Context of Legalized Euthanasia in the Netherlands

An Interview with Zbigniew Zylicz, MD, PhD

Dr. Zbigniew Zylicz serves as medical director of Hospice Rozenheuvel, one of the first inpatient hospices in the Netherlands, which opened under his direction in 1994 with a small unit of nine beds. As an oncologist and internist, Dr. Zylicz divides his time between direct patient and family care at the hospice, consulting to area general practitioners (GPs) seeking to address complex pain and symptom management questions for their patients, writing, and research. Dr. Zylicz has written widely on physician-assisted suicide (PAS), euthanasia, and palliative care. Given the legal status of euthanasia, within some constraints such as a required second opinion, Dr. Zylicz has found that educating GPs and patients about the wide range of comfort care interventions available has tempered requests for euthanasia in the Netherlands. He has written about his experiences working for 20 years in palliative care in Holland, as well as his early years in Poland and formation as a physician in his recent book Terminus, which is currently being translated into English.

In the following interview with Innovations Staff Editor Holly D. Sivec, he explores the distinctions between hopelessness and depression and the ways palliative care physicians can address them effectively, as well as the evolution of palliative care in the Netherlands, and how the availability of euthanasia has interacted with this development. [Citation: Zylicz Z, Sivec HD. Addressing hopelessness in the context of legalized euthanasia in the Netherlands: An interview with Zbigniew Zylicz. Innovations in End-of-Life Care. 2002;4(6):www.edc.org/lastacts]

Connecting with the Patient

How do you help patients find a sense of meaning, and also maintain their dignity, when they are facing a terminal illness?

First and foremost, I think one of the most important things we do when we provide palliative care is that we meet the patient on the same level—as another person. For a physician, it is so important to remember that you are just a regular person and to connect with the patient as a human being who has emotions. Patients and doctors may have an image of the doctor as the person who meets a patient wearing a white coat, with a stethoscope in his pocket and a lot of books and knowledge. Doctors do have this specialized information but I do not feel it is helpful to begin there, talking about drugs and high-tech medicine. Instead, I believe the relationship must begin as two people who are on the same level.

There is no shame in having tears in your eyes or showing your emotional reaction to what the patient is talking about. It can be therapeutic to reveal things about one's own experience, for example, to say, "My daughter had the same reaction to the same problem." You are opening yourself up, even if you do not react entirely as a friend or family member would to the patient's experience. Patients then feel that they are meeting a fellow human being rather than a doctor who has more status and whose time is more valuable than theirs. In my experience, when I approach people this way, they open themselves up, will talk and tell their story, as if I was a friend. New patients, or when I am consulting to another doctor's patients, are often very surprised to find a doctor with what is perceived as an old-fashioned approach—showing interest in the person of the patient and listening.

When you first meet a patient, either as the primary doctor or as a consultant, how do you approach the situation?

It is important to me to see the patient at home and speak to the family, if that is possible. I want to see the atmosphere, and also the level at which the patient operates, and so on. It's much better to see the patient at home than to ask him or her to come to the hospice. Some ambulatory patients do come to the hospice for our first contact, but most of the patients are too sick to come to us. After listening to the patient's story, we make a plan for how to treat this problem, and determine the next steps.

When you speak to these patients, do you listen for something specific in their story?

It is very important to hear the patient's story, and listen to how he or she presents it. I find it helpful to gain an understanding of the patient's system for operating in the world. What is the patient thinking? How does this person's personality or character interact with the illness and his or her understanding of it? Without this understanding, you will not be able to appreciate a bit of the patient's suffering.

I talk to many patients who are suffering immensely. People whose suffering you cannot even begin to imagine. We currently have a lady in hospice who came for terminal care from disseminated breast cancer, but during her admission here, her 12-year-old son had a fatal accident. It's difficult to imagine what these people are going through, a double loss, sometimes more. It's horrible. There are no measures for this degree of suffering.

Responding to Suffering

How do you respond to the suffering you see among patients?

Let me give you an example. Today I spoke to a lady who was screaming in pain, and even though we increased her dosages of painkillers, nothing seemed to bring her comfort. When I came to see her, I spent about one hour just talking with her. She told me a story about her divorce, about the children who are suffering through the divorce, and everything that is going wrong for them. She doesn't want to die. She wants to care for her children, her two sons, but she is dying. This suffering and her unfulfilled wishes are difficult to imagine.

In our conversation, I made the analogy of a mother hen trying to keep her growing chicks under her wings, but now they are too big. She needs to let them go. At the end of this talk, her son who is 16 came in the room and we finished this story together. She started to cry and she was completely relieved of her pain.

After our talk, I changed her drug regimen only slightly, adding a low dose of an anxiolytic drug. Over the course of our conversation, I noticed that she became more comfortable because she was able to talk about what was hurting her. I called the hospice back earlier this evening and she is still without pain, still very comfortable, even six hours later. I hope she'll have a good night.

That is the power of what we are doing. I think there are doctors who immediately take out their pads and just write another prescription. But that's not going to solve the problem. Doctors need to recognize their patient's physical, psychological, and spiritual pain as well as how they intertwine.

Do you involve psychiatrists when you're helping these patients deal with their suffering?

Not very often. We have a consultant psychiatrist in our hospice, and we use these consultations only in cases when we have a real psychiatric problem, such as severe depression or psychosis. In all other cases we try to solve the problem on our own. However, we will frequently talk about our patients with psychiatrists and other specialists from the regional hospital.

Could you give me an example of when you might use a psychiatric consultation? Would it be you or the GP who initiates the request?

I am usually the one who asks for this consultation, and in nine out of ten cases it would be for people who are suffering from severe depression. Then we need support from psychiatry as well as better medication and better knowledge about how to deal with this diagnosis. We also have a psychologist in hospice, but she's only here for several hours a week, mainly to support the staff and occasionally look after patients.

Are there any tools that you use with your patients to screen for depression?

Our psychologist occasionally uses the Hospital Anxiety and Depression (HAD) scale ,¹ and she reports the results to us.

Hopelessness vs. Depression

In your setting, do you see a distinction between hopelessness and depression?

Yes. I think we see much more hopelessness than true depression, in a medical sense. Based on what we see, people who are feeling hopeless can spontaneously improve within one or two weeks, while depressed patients do not do this so dynamically. Patients who are admitted from a hospital setting to the hospice often arrive feeling quite hopeless, as well as having severe symptoms of pain, vomiting, and nausea. Once we are able to treat their symptoms, and perhaps it is also the whole person approach we take here, we find that their feelings of hopelessness often lift.

The lady I spoke about with the horrible pain offers another example. She felt hopeless because just before coming to our hospice, she and her two children needed to move from their house to another flat. She herself felt horrible that she could not be there for her children, who are 16 and 18, believing that they'd never manage such a big move without her. When she first arrived at the hospice, she said, "But I need to go back home every day to help my children." And now, day by day, she hears that her children are managing very well, that they made the move and are comfortably set up in their new home. Her hopelessness is changing into hope, and I think this is giving her a lot of satisfaction. It helps her survive this part of her life.

Do you encounter any barriers when you are trying to differentiate between hopelessness and depression, or is it clear-cut?

After nine years of working in a hospice, it appears to me that hopelessness is much more functional. It is predominately a lack of adaptation that makes people hopeless. We do not see, or perhaps we don't recognize true depression, with all its symptoms, very often in our environment.

Indeed, we see some patients whom we treat, for example, with antidepressants for their pain or pruritus. We are not even thinking they're depressed, and suddenly we see they're improving, so we think they might have been depressed. I usually classify these cases as sub-clinical depression. But, true psychological depression is, in our opinion, not so common in hospice, and much more often patients are experiencing hopelessness, which we find easier to treat in the hospice environment.

Supporting Family Members

Do you have a system in place for caring for the family members of these patients who also might be struggling with feelings of hopelessness or depression?

We have a very special person in our hospice, a former nurse who cares for the patients' families. You could call her a bereavement counselor, but she is much more than that. As soon as the family makes contact with us, even before the patient is admitted to the hospice, she arranges for a long interview with the immediate family members to help us understand the patient's system. During admission she usually sees the families weekly and tries to answer their questions, support them with additional information, and comforts them. At this same time we try to identify those family members who run a higher risk of problems in bereavement. To do so, we compiled a series of risk factors to look for to determine who might benefit most from some additional care. For example, if a family member has experienced previous unresolved losses, if he or she has a history of psychiatric disease, depression or a psychosis, if the home situation is complicated, or the family member will be alone after the death of their spouse—any of these factors may put them at a higher risk of problems in bereavement. And these family members get very special care from us.

Contact with families continues for approximately one year after the patient's death. The frequency of these bereavement care contacts is dependent on the situation. Sometimes she sees the family members at their homes, but more often they come to her office. Her help is always very practical and very supportive. It varies from teaching widowed men how to prepare their meals to more complicated discussions about existential problems. Sometimes she refers the family members to a social worker if it is more appropriate. All family members get some type of bereavement care, but we cannot give this more intensive care to all families. Our volunteers call on all family members, perhaps having a cup of coffee with them once a month to talk about how it's going.

Logistics can make it difficult to near impossible to reach out to all members of a family. Some of them live far away, in the US or in Canada, where others might only live 100 km. from the hospice. It also happens that some don't require much help at all.

Consulting to GPs

Can you tell us some more about your role as consultant to the area GPs?

Back in 1994 when I first took on this role, patients with advanced diseases who were not responding to curative or palliative treatment were just discharged to their homes. No matter how complicated the condition, at home they were under the care of their GP who only had a global idea about palliative and terminal care. At the time and under these circumstances, the GPs and district nurses did not feel that better care was possible, and this frustrated some of them deeply. I felt they might be grateful for some help, so I began my work as a palliative care consultant. In the beginning, I remember that we were unable to communicate with each other. I first had to throw out some of the preconceptions about GPs that I had accumulated from my work in the hospital. With time, the GPs began to appreciate me and I became their friend.

I had to start from the very beginning: how to communicate with a GP, present the case to him or her, answer questions, and avoid damage or conflicts. But once you step outside the hospital, you realize the limitations of your stereotypes. The GPs you meet are nice, interesting people who genuinely want to help and are quite excited about what you are doing. I must say, this is my world now.

Hospice Rozenheuvel is in an area inhabited by 350,000 people, and we have 220 GPs working in the area. In contrast to the US situation, Dutch GPs spend 30 percent of their time visiting patients at home when patients cannot make it in to the office. After nine years as medical director of the hospice, I know most of the GPs by their first name and I'm friends with many of them. If a GP has a problem and calls me, we usually go to see the patient together that same day, or the following day. We provide consultations at the bedside, which is something unique. In other areas of the Netherlands, these palliative care consultations are mainly done over the telephone. So, the home/bedside consultation we offer here is exceptional by Dutch standards.

I suspect there is a cost difference between providing these bedside consultations vs. those conducted over the telephone. Is that so?

Indeed. The Minister of Health Care said it is too expensive, that insurance cannot cover these bedside consultations. But at Hospice Rozenheuvel we have found some funds to continue these consultations on our own. Most of this money comes to us from the patients themselves—either during their lives, or in their wills. When we hear from colleagues who have been providing consultations over the phone for the past two years now, they complain about never seeing patients anymore. They really want to do bedside consultations the way we do. You miss a lot when you don't have direct contact with the patient. It may be less expensive, but doctors learn so little without that contact.

Can you give me an example of how your consultation process typically plays out?

The GP either phones or sends me a fax with the name of the patient along with the question or concern, i.e., the reason he or she is consulting me. I really need to know what he's asking me for, what to do and what not to do, and to understand the doctor's thoughts about the patient and his or her prognosis. And then, either my secretary or I call him back to make an appointment.

Sometimes I might arrive a half-hour early to hear the patient's story, which is already familiar to the GP; other times I pick him up at his practice and we go right to the patient's house. It depends on the GP. It also happens that the GP has no time to come with me and is waiting for my advice. In most instances, these consultations last 60 to 90 minutes for the first meeting.

Usually, I report my assessment and offer my recommendation directly to the GP by phone and in writing. Most often, I will see the patient two or three times. If the GP is asking for help with pain control, I will usually go back once more just to check and see if my measures have been effective. Once the original concern has been addressed, I usually turn the patient back over to the GP's care. The GP then continues to follow the patient and usually keeps contact with me by telephone.

What are your goals when you work with GPs, beyond improving the patient's symptoms?

One of the important goals is to train the GPs. There are many ways to train GPs to provide the highest quality of end-of-life care, but first you need to teach them how to formulate their questions. If they do not understand what they observe, or if they simply miss key information when they examine and listen to these gravely ill patients, they will inevitably ask the wrong question about what to do next.

Sometimes when I am called in to provide a palliative care consultation, I need to take over the patient's care from the GP. This happens when the GP is on the leave and at the end of the process somebody new and unknown to the patient would need to be introduced. Or it might be that the dynamics of the disease are very high and the drugs and techniques are to unfamiliar to the GP, so he or she let me "do the work." It also may be that the GP is emotionally unable to offer more personal care.

In addition to our consultations and bedside tutorials, we also hold many courses and trainings for the GPs on topics such as how to recognize and treat symptoms, how to recognize patterns, and understand what is going on. As the GPs begin to make sense out of what we teach, they really start to enjoy caring for their patients in this person-to-person context.

Caring for terminal patients is an important part of their practice, and, when we are able to alter the GPs' caregiving approach, they are much more likely to respect the patient's dignity. Without this knowledge, or when contact with the patient is stressed or unpleasant, it is difficult to do so. The GP might be afraid of the patient, perhaps running away or writing a lot of prescriptions instead of spending time talking to the patient. So, by giving the GPs more knowledge and a more fine-grained ability to recognize symptoms and patterns, as well as the confidence that they can deal with what they diagnose, we improve the patient's quality of care and also the GPs' satisfaction with their work.

Evolution of Palliative Care in the Netherlands

In the past five years, what improvements have you seen in palliative care, particularly in your corner of the world?

Four or five years ago, we were just beginning. We were experienced doctors, but palliative care was a relatively new concept to the general public. At the time, most of the GPs thought euthanasia was the best solution to many problems because they believed that there were no other solutions to ease a patient's pain and suffering at the end of life. What has improved is that we all are now convinced that this belief is untrue, and we know we need to look for other solutions. They do exist, even if we are unable to see them right away.

This shift in thinking has been tremendous. For example, three years ago, we proposed a three-day course to train GPs in palliative care. There were 35 openings in the course and 800 applicants! It is unbelievable how much interest there is nowadays. Seven years ago, maybe even five years ago, I thought I'd never fill the room.

This example shows how far behind we were from our colleagues in the United Kingdom and how far we've come. Ten years ago, I wrote letter to a Dutch medical journal in which I compared the palliative medicine continuing medical education hours available to a GP in Holland with a GP in greater London, which has a comparable population. A GP in Holland had three hours of training in palliative care issues available in a quarter of a year, while in the same time period a GP in London had a choice of courses to attend totaling 180 hours. That was 60 times more course offerings! I have conducted the exact same study now, and in the Netherlands we currently offer between 60 and 80 hours of palliative care training each quarter year. Also, every GP trainee receives some training in palliative care at the University. So, there has been an enormous increase in the number of Dutch GPs who are being exposed to palliative care training. All of this, I believe, is because of the recent law on euthanasia, which is very paradoxical. The paradox I see is, that in making it available, it has spurred physicians to explore other ways to respond to patients' requests so as to avert this solution—and so there is less euthanasia than there might be were it not legal.

Please remind us of the distinction between euthanasia and physician-assisted suicide, as it is the latter that is much discussed in the United States.

Euthanasia is intentionally shortening a patient's life on his or her request, usually with a lethal injection. Physician-assisted suicide is when the doctor prescribes drugs and gives them to the patient, but the patient takes them on their own, without the doctor being present or actively involved. In the Netherlands, physician-assisted suicide, which is widely discussed in the US, is not as popular as euthanasia. Of the 3,000 deaths in which a physician has played some kind of active role (total euthanasia and physician-assisted suicide cases per year in the Netherlands) 90 percent are euthanasia and only 10 percent (approximately 300 deaths) are due to physician-assisted suicide.

It is legal in this country to assist suicide or provide euthanasia as long as the physician abides by several rules of good practice. The first rule is that another doctor needs to see the patient before euthanasia takes place. This second doctor should be one who has been specially trained for this purpose. The Ministry of Health Care designated a lot of money for the training of these second opinion doctors. I was involved in training these doctors in palliative medicine. They needed to know about drugs and about the possibilities of palliative medicine and pain control. Also, the death must be reported to a regional commission of experts that scrutinize every case. Within several weeks the physician will find out whether the death has been deemed a wrongful termination and if the case will be sent to the court or if it has been dismissed. This is true of every single death that is labeled as euthanasia or PAS, as long as it is reported.

What is happening now is an interesting scenario. These same doctors who were trained to be the second opinion doctors in the case of a euthanasia request, are now saying that the more they know about palliative care and pain and symptom control, the less euthanasia they need to perform. Their knowledge has become a powerful tool to prevent euthanasia. For example, when the second opinion doctor goes in to see the patient and explains the options to him or her, it is quite possible that the GP and the patient may have never even heard of these alternatives. Once they understand their options, the patient and the doctor immediately chose something other than euthanasia. I think this power to offer alternatives is one of the very important motives for developing palliative care in this country.

Another important factor is that in the past every doctor could say, "No, I will not perform euthanasia because I am not allowed to do it. It is still under the penal code and I will not do this." Currently, the patients put strong pressure on GPs to perform euthanasia because it is allowed, and it is a law, and because the doctor will not be punished for doing so. Thus, the pressure on the shoulders of the GP has increased enormously, and the GPs said, "We are fed up with this pressure, we are not doctors anymore if we cannot offer alternatives to euthanasia." So I told them, "The more knowledge you have about good pain and symptom treatment, the better you can resist this pressure." I believe that this is why hundreds of doctors are now coming to the trainings and trying to absorb all this knowledge, when in the past there was absolutely no interest in what we had to say. At the moment, I could fill my whole day with training. The GPs are very interested in learning about the alternatives.

I meet many, many doctors here in Holland, and most of them are saying that they feel accountable when a decision is made to perform euthanasia because they have a responsibility to care for the patient. I do not blame doctors who perform euthanasia. I believe physicians are caught in a bind: they feel an obligation to be responsive to the patient's wishes, to "do no harm," and palliate suffering. If euthanasia is their only choice, they will perform it. But when you give these doctors knowledge and other ways of controlling the patient's suffering, they will immediately use it and continue to do so.

So, it sounds like good pain and symptom treatment is the answer.

Yes, in many cases, that is true. But not always. With perfect end-of-life-care you cannot remove all the feelings of failure, ignorance, and negligence some patients experience at earlier points in their lives. Doctors need to care for the whole patient from the very beginning, not just at the end of life. In that way we all are responsible for the diminishing need for euthanasia and PAS. It's not only about symptom control, but also the attitude of the doctor toward sick and dying patients that is so important.

Room for Improvement

Even with as far as Holland has progressed in terms of caring for its dying patients, are there other aspects of palliative care that you'd still like to see improved?

Always. The greatest need for improvement is at the university level. Just to begin to train, not only the "good" and "interested" doctors, but to train everybody to be a good doctor. This process should start early in the medical education when students are the most idealistic and accepting. What we are trying to do now is to introduce some lessons on attitudes toward death and dying in the first two years of studies, so they can reflect on this knowledge throughout their six years of medical education.

But the students need to learn how to look at these problems and understand how other doctors are dealing with these same issues, particularly here in the Netherlands. I think this is highly important. You don't want to just teach them tricks about how to control pain, which drug is better than the other, and how to control the side effects, but also what is it like to care for somebody who is dying. The student needs to develop a strong understanding of what their attitude is toward death. There is so much room for improvement here.

We also need to teach evidence-based medicine, and for most of what is being taught in the universities about end-of-life care, there is just not enough evidence. We need to do many more studies. And then we need to discuss these studies and publish on them. Unless we have the space to develop in this direction, palliative care will never be recognized at the university level and our years of progress will run the risk of coming to an end.

Reference:

1. Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandanavia. 1983;67:361-370. [Return to International Perspectives]