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

International Perspectives

Health Policy and Education—Tools for Promoting Quality of Life:

An Interview with Professor Vittorio Ventafridda, MD

Professor Vittorio Ventafridda, MD, of Milan, Italy, trained in anesthesiology and worked for some time as a cancer pain specialist before making palliative care his central interest. Founder of the Italian palliative care movement, one of the authors of the WHO analgesic ladder, one of the founders of the International Association for the Study of Pain (IASP) and of the European Association for Palliative Care (EAPC) in 1988, Professor Ventafridda has most recently focused on shaping national and international policies regarding palliative care. In this interview he speaks about the genesis of his interest in palliative care, and how policy and education can improve care of the dying, which includes most centrally the relief of suffering and cultivating an interest in the quality of patients' lives at the end of life. This interview was conducted by Associate Editor Anna L. Romer, EdD. [Citation information: Ventafridda V. Health Policy and Education: Tools for Promoting Quality of Life: An Interview with Vittorio Ventafridda, MD, by AL Romer. Innovations in End-of-Life Care,2000;2(6), http://www.edc.org/lastacts]

Could you begin by describing how you became interested in palliative care?

In the early 1970's I was working at the Istituto Nazionale Tumori, the largest cancer institution in Italy, where as an anesthesiologist, I was devoted to performing pain blocks and other invasive procedures. After some years, I realized that treating pain with those modalities was different from treating the suffering of the whole person who was dying. I began to think that during my many years in this cancer institution, we had only scratched the surface of the problem, that is, the problem of facing "total pain," which is quite different from applying a technical modality. There are still many pain experts who are far from understanding this problem of suffering. This realization changed my attitude and behavior completely.

I began working with dying patients, especially in their homes, with a home care service funded by the Floriani Foundation1 that allowed me to integrate my work at the hospital. As a result of this new work, I had the opportunity to discover a new world, and I became more aware of the patients' and families' experience of dying. In 1988, after a previous congress in Venice on cancer pain in the late seventies, I held another one in Milan regarding end-of-life care, focusing on pain and symptom control, psychosocial issues, and the dying process. These congresses revealed a great interest, which led to the founding of first, the European Association for Palliative Care (EAPC) and then the Italian Association of Palliative Care [Associazione Italiana di cure palliative].

It sounds as though you are defining pain more broadly than physical symptom management. Would it be fair to say your central interest is in relieving suffering?

My understanding of pain has broadened. I see it differently from how I did when I founded the IASP. At the beginning, I found that oncologists, pain experts, and the medical establishment did not understand what I was doing. Some pain experts were against palliative care, because they thought it was not scientific enough and not doctor's work. In my efforts to convert others to the cause of palliative care, I met with great difficulty, many barriers, including the lack of financial resources allocated for palliative care, which still exists now, in Europe.

What inspired this wider understanding of pain as suffering?

First of all, following patients changed my understanding. I was very deeply involved in pain treatment in the 1970's; I was doing a lot of new studies of surgical and anesthesiological procedures. Patients were kissing my hands because their pain was fully relieved—and then they went home, the pain returned, and they became desperate because they thought they were dying. When I was nearby and could observe the process of dying in these patients—the desperation, loneliness, and all of the needs that we had ignored completely—I was quite shocked. I wanted to understand each patient's end of life. I am still quite interested in the last week, the last days, the last hours of life.

As you think about quality of life in palliative care, in the Italian context, what do you think are the most important features of quality of life?

Quality of life is a broad term often used in politics, but it also refers to the subjective wishes of patients, which must be recognized. One first needs to address unpleasant physical perceptions. Pain and other symptoms are what you see right away. We do not yet offer adequate pain relief. Pain and symptoms reported by the patient are important because often they are the tip of the iceberg of suffering. Then you find lots of social and emotional problems, which should also be relieved. Unfortunately, in Italy, we often find that pain is considered to be a sign of a pathology that should be treated, but both scientifically and clinically, it is not regarded as very important. We do not give enough attention to pain management.

Right now the Italian Ministry of Health has charged me with organizing a pain-free hospital. I will try even though I know it will be a difficult task. Our goal is to make assessing pain a 5^th vital sign, similar to the U.S. effort. This is a campaign to educate all the care providers in the hospital. Pain experts need to convey to nurses and doctors how to evaluate pain at least three times a day, and then track these assessments in the medical charts so that doctors will be aware of patients' pain, and so treat it more appropriately.

But I found that we can make breakthroughs, not only through changing practice, but also by promoting a breakthrough in health policy. To this end, you have to involve politicians— people who have power in health policy. In order to do that, I worked closely with the European Community (EC) in Brussels and also with the Council of Europe in Strasbourg.

What was your main message to these policy makers?

I was striving to make clear the importance of cancer pain relief and palliative care to leaders involved in "Europe against Cancer," a public health effort promoted by the European Community.2 I am also involved in another Ministry of Health project – working toward the full recognition of palliative care specialists and palliative medicine as a specialty.

Two years ago we reached the first step when the Italian government recognized the need for hospices in every single region of country. But they did not provide for the staffing of these hospices. So, with my collaborators I am trying to fill this gap. Currently, my work is mostly only on this policy level, and I am no longer directly involved in patient care.

My main goal is to modify the focus of Italian official health policy to include palliative care. This is really difficult. I still say that doctors are one of the main barriers to improving pain management and palliative care. I think the doctors sometimes forget that simple touch and simply listening can be as important as a shot of morphine. We need to change attitudes if we want to win the battle against suffering.

Since you are naming doctors as the primary barriers to addressing pain adequately, what is the key message you have for them?

I want doctors to understand that life has limits. These limits should be recognized as part of life. We have to attend to quality of life and human dignity at the end of life. One of the first things doctors need to recognize is that when we cannot cure, we must care as much as possible. We must offer all the resources available to our patients as human beings until the end of the life. When we die, the dying process often entails suffering, as we have seen in the results the SUPPORT study.3 We have read many other reports (some conducted in Italy) confirming how poorly we care for patients at the end of life. There is tremendous suffering, and especially in the society we live in now, where the denial of death, the rush for profit, and a lack of interest in terminally ill patients all contribute to this problem. We can do a lot to be close to the dying person; not only medically, but also on a holistic way. Care of dying persons requires a team approach as well as making sure that the people can stay at home or at least have a comfortable environment.

Do you think that physicians are really the most suited to be providing this human contact?

No, I think the nurses are primary, as well as family. The nurse plays the most important role in providing palliative care. However, nurses need to be educated and so do families. I think of the doctor as a manager who knows a great deal about the problems and can work with the team. Certainly, the doctor's word has more charismatic power, but the entire team is important.

Can you describe the attitude you would like doctors to have toward end-of-life care?

I believe it is important to have an attitude of interest. Doctors must be interested in caring for terminally ill patients. Some doctors may not be interested in doing this work themselves, but I would like them to recognize that care for the dying is very important work.

If you go into any pediatric unit, you see how nurseries are kept. You see how much interest there is in the beginning of life, interest not only in the well-being of babies, but also scientific interest. In contrast, attention is not focused on what happens in the last hours of life. A patient is losing consciousness, and losing the capacity to communicate before losing consciousness. We must have an interest in the few hours before dying. There is so much we have to study in order to make the exit from life better than it is now.

We need education for medical students so that doctors come out of medical school with knowledge of care of the dying. We also need to educate children in the schools about death. What is death? How does death occur? How do we cope with death? We need to change attitudes about dying and we need to start from the beginning.

This is difficult because we live in a society where we have values that are totally different. We value efficiency, money, reaching the top of a profession. When we focus on these things, it is easy to deny death completely.

How do physicians speak about death with patients in this context?

Well, we have a great problem. In Italy, the family does not allow the doctor to say anything to the patient except that cure is possible. Families and doctors often give the patient any kind of possible treatment, which can lead to "overtreatment." I have tried to convince my colleagues that such an approach increases patients' suffering. I think disclosure should be done gradually, because you have to have established some intimacy with the patient before telling this kind of news. This requires a long time, and can be time-consuming. Today, doctors don't have time—they say, "You don't have anything, you will be cured, you will come out in a few days, few weeks, few months." But they don't take care to say, "You are dying." The patient will realize that he or she is dying, in my opinion, in a matter of a few weeks. Before death, the great majority of patients already know they are dying.

So, disclosure is one of the areas in which we need to work. If physicians have been clear about the diagnosis, the path is easier. We can reach an intimacy with patients, and we can communicate a great deal during this last phase of life. Patients' quality of life will improve when communication is clear. But this question of disclosure is very difficult. I think we need to solve the problem of education of families in order to help these patients. Without education, most of these patients are often receiving futile treatment and dying in the intensive care unit.

Do you think that patients and their families want death to occur in the intensive care unit?

A patient will do anything possible to save his or her life, not all patients, but the majority. Even if a patient doesn't want a certain treatment, the family may encourage the patient to accept a very difficult procedure with the hope of saving the patient's life. In my experience, many times the patients' relatives are unwittingly responsible for the suffering of the patient.

It sounds as though disclosure and family expectations are, perhaps, two of the biggest barriers to quality of life in your setting.

Yes, that's right, as well as patients' expectations.

Where do you feel the most pressing need for progress and/or improvement is, given that scenario?

First, we need to correct that aspect of disclosure, not in a simple way, but by taking time to understand patients and tell them what they can hear. Second, we need people to understand that palliative care is important for the relief of suffering. I would like to hear people say, "If I am in that situation in my life, I would prefer palliative care." We need to change attitudes. I have already seen some changes since the late 1970's when I started this work. This work, to be continued by the next generation, is a slow and ongoing process.

If you think of teaching medical students, i.e., the next generation of doctors, what would be the number one lesson about providing palliative care and enhancing patient and family quality of life?

Ethics of end-of-life care. What I mean is, teach students how to give correct treatment—treatment that is not futile. Teach students the correct way to speak with the patients; how to offer a great environment to patients, at home, in a hospice, or in the hospital, and how to work as a team in order to help patients at the end of life. There are many items in the curriculum of palliative care, which should be taught to doctors in the last years of medical school.

But also—this is a dream—we need to start to teach about death and dying in grammar school, in college, because as I say, we must start from the beginning if we want to change attitudes. People should know that everyone goes through this moment of life. I believe that in this final moment, we should find no isolation. My dream is that we each will have someone who will take care of us, and that there be no possibility of futile surgical treatment or futile intensive care treatment at the end of life.

References:

1. The Floriani Foundation has sponsored nurses and doctors to create several palliative care groups scattered across Italy. The Foundation also runs a school of palliative medicine, a bioethics committee, and hosts an important library and database of references.[Return to International Perspectives]

2. See Resources and Tools page for link to this program's website.[Return to International Perspectives]

3. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). A controlled trial to improve care for seriously ill hospitalized patients. Journal of the American Medical Association. 1995;274:1591-1597.[Return to International Perspectives]

Post a Comment

[Go to Mariela Bertolino, MD]

This archived issue:
Archive Issue Home | Editorial | Featured Innovation | International Perspectives | Read More | Resources & Tools | On-line Discussion

Site Design by Interactive Web Design

A project of