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

International Perspectives

Promoting Quality of Life Near the End of Life in Argentina:

An interview with Mariela Bertolino, MD

In the following interview, Mariela Bertolino, MD, discusses the current status of palliative care in Buenos Aires, Argentina and ongoing efforts to improve this care in her country. She comments on the use of the Edmonton Symptom Assessment Scale for measuring quality of life in her palliative care program, which is based in Tornú Hospital-FEMEBA Foundation, a public hospital in Buenos Aires. Her program serves approximately 350 patients a year on an outpatient basis and has six inpatient beds, which are the first and, thus far, only specifically designated palliative care beds in a country of 30 million people. The interview was conducted by Innovations Associate Editor Karen S. Heller, Ph.D. [Citation: Bertolino M. Promoting quality near the end of life in Argentina: An interview with Mariela Bertolino, MD, by KS Heller. Innovations in End-of-Life Care, 2000; 2(6), http://www.edc.org/lastacts]

How would you define the concept, "quality of life," and how are you trying to improve quality of life for patients in your program in Buenos Aires?

The idea of life quality is very meaningful for us and for all those working in palliative care. I'll try to give our point of view. Working in palliative care, we are trying to help people in the advanced stages of different diseases. Most of our patients have cancer and some have difficulties with physical symptoms, psychological distress, social and financial issues, all of which are related to spiritual or existential problems, as well.

For us, quality of life is a concept that tries to put all these issues together, and it has inspired our program's policies regarding patients and families. But sometimes, even when we try to make this construct of quality of life reflect the realistic problems or needs or concerns of the people who are ill and their families, we find that it is difficult to use a tool to measure it on a regular basis. In talking with patients and families in our clinic, we are probably more familiar with the term "well-being" than "quality of life." In general, we try to allow people to lead the best possible lives at the end-of-life and to find the best possible well-being, which varies a lot from person to person.

How do you define well-being? Is this from the patient's point of view?

For us, the concept of "well-being," includes all the things that are giving the patient some satisfaction or happiness, or on the contrary, are disturbing to the patient. When we do our assessments during the patient interview, we talk first about physical and psychological symptoms; after that, we address psychosocial problems and, sometimes, existential difficulties. Then, at the end of the interview, we ask the patient, "With all of that, how would you say you are feeling?" The answer tells us about the patient's well-being. Thus, the idea of "well-being" integrates how the patient feels, physically, emotionally, and spiritually, all together.

It sounds as though you ask the same kind of questions that are on the Edmonton Symptom Assessment Scale. Do you use that tool?

We do the Edmonton Symptom Assessment Scale with patients on a regular basis.

Have you modified that tool at all for use in your own setting?

We did add one item—insomnia, difficulty in sleeping. Also, the Edmonton Symptom Assessment Scale has the well-being item in the middle, and sometimes, for practical reasons, I ask about well-being after having done all the other items. At the end of the interview, I try to get the number on a scale of 0 to 10 that would best describe how the patient is feeling overall.

To what extent do you focus on the family caregiver? Do you also assess their well-being in any way?

We do, but not with that tool. Although we include the family in the interview and ask many questions concerning the problems of the family, we do not have anything structured to measure what is happening with the family.

Since you did some of your training in Canada, you have a good perspective on the ways in which palliative care is delivered in both countries. What differences or similarities do you see?

We have many differences, some of which are very important. I would say there are organizational differences. I work in a public hospital, which is supported by the government and an external Foundation: FEMEBA. However, unlike Canada, Argentina does not have a national health insurance program. We have many payment systems, including some private social insurance, but more than half of the people who come to our hospital for palliative care have no insurance and are in a very delicate economic situation. They may not have money to pay for medications nor sometimes even for transportation to the hospital. So, this situation creates many particularities of this program. Our goals are probably the same as those of our colleagues in Canada, but our possibilities of delivering care are sometimes limited by the financial problems of the family and the patient.

How do you structure the care provided in your program?

We provide both inpatient and outpatient care. We have a small inpatient palliative care unit with six beds. In addition, we have two beds for outpatient palliative day care, where people come to the hospital for several hours a day, but then return home. And we have an outpatient clinic, where we do consultations five days a week, from Monday through Friday. We also deliver a little home care in the surroundings of the hospital, within the hospital's catchment area. The greater metropolitan area of Buenos Aires is huge—approximately 13 million people—with many hospitals. Each hospital has a catchment area, which designates the region from which people can come to that hospital. So, we provide palliative care to people in our area of the city. We do not go to the homes of people who are living beyond our area. Other inpatient palliative care units are being planned elsewhere.

How many people does your program serve every year?

We have 250 new patients a year, and we have 300-350 patients continuously in treatment, because some patients enter one year and continue into the next year. We try to treat patients from the earliest stage possible, so oncology may refer patients still in active cancer treatment to us if they are having any physical or psychological symptoms. We try to do what we call continuous care, providing both supportive and palliative care, not only at the very end of peoples' lives, but if possible, before they get to that.

How is this kind of care presented to oncology patients?

The other physicians (oncologists or internal medicine physicians) that refer patients to us present palliative care as a discipline, which helps people feel better. Many of them put the accent on the care we can deliver together with the oncologists and internists. So, if patients can have cancer treatment, they will have it, while we address their symptoms; and if they cannot benefit from cancer treatment, we address more of the problematic issues that may arise at the end of life.

Do you work with the family physician?

Fewer than 5 percent of our patients have a family physician. That is a big problem, which means that when we assume the care of a patient, sometimes we end up being a kind of family physician. That's not our idea, but often the patient cannot afford a family physician.

How is the care that you provide paid for?

If a patient has insurance, the insurance provider pays the hospital. If people do not have insurance, this hospital pays for their care. If someone seen as an outpatient cannot afford to pay for consultations with our team, the assessment and the treatment can be absolutely free of charge, but in many cases the patient must buy any medication that is needed after the consultation.

Treating Pain

Because most of our patients in this situation cannot afford the medication, we implemented a program with the hospital pharmacy, whereby the pharmacy prepares the opioid medications, which are provided free for the outpatients. This medication is not commercially prepared by a pharmaceutical company. Rather, it is compounded in the pharmacy with, for example, morphine powder and water. In this way, we have made medication available to outpatients in a way that is more economical for the hospital and is free of charge to the patients.

Is the financial burden on poor people such that they may not fill prescriptions for medicines or they may not take the medicine in the prescribed doses, but rather will try to take less to stretch it out?

Yes, that happens. In our institution, we are able to alleviate that a little bit because of the wonderful job that is done by our pharmacy. But if you go to some other hospitals, which also are providing palliative care on an outpatient basis, they do not have morphine to give to the patients, and although they prescribe it, afterwards, all the possibilities that you just mentioned may happen.

But with your patients, do you feel you can be sure that they are taking the medicine?

Most of them, yes. The most important medicines are the opioids and their adjuvants (antiemetics, laxatives, etc.) and we can deliver that. Sometimes, when we use up the amount of medication that we have in the hospital, we have a hard time getting more, but I cannot complain. I'm glad of what we can get in this hospital. But our situation is not universal in Buenos Aires.

We did a survey two months ago, asking every pharmacy in the 33 hospitals of Buenos Aires about their medications. There are 23 hospitals that deliver oncology treatment. Of those 23 hospitals, 2 hospitals do not have morphine at all, and 5 hospitals do not have any oral formulation of morphine. Only five hospitals have some alternatives to morphine, let's say oxycodone, methadone or hydro-morphone. That is astonishing because you know that you have to have a strong opioid alternative to morphine in order to treat cancer patients and to deal with the side effects of morphine. As you can see, cancer pain treatment is not very well organized in the city of Buenos Aires.

Why is pain medication so hard to come by?

The problem exists at different levels. If we analyze the cancer pain management recommendations of the World Health Organization, we could say the barrier is insufficient health care provider education. There are many doctors that do not know how to prescribe strong opioids. We do not get thematic, systematic education on this topic in the universities. And until now, we have lacked a clear political policy and directives concerning the treatment of cancer pain from the Argentinean Minister of Health. Also, the cost of the different opioid medications is very high in Argentina. Morphine prices are higher here than in Canada or in the United States, because we have very high taxes on this kind of medication. So, with high prices, hospitals do not buy the medication.

How much free care do you provide, overall?

We provide free care to more than half of our patients. Even the patient who has prepaid health insurance may not be able to buy all the medications. Sometimes patients can afford a little bit and the rest we have to give them.

Does health insurance pay for home care?

It all depends. Home care here in Argentina is not generalized yet, so that is a type of care that is not really offered to everyone. That's a very big problem.

Do you have hospice care in Argentina?

No, we don't. We have been running this program since 1996, but we just put in the six-bed inpatient unit last month and it is the only unit where you can specifically deliver inpatient palliative care in Argentina, a country of 30 million people. So, there are no specific beds in the chronic care hospital or in the acute hospital, and there is no hospice institution in the country.

Last year the Argentinean Palliative Care Association did a survey and found only 25 supportive care or palliative care teams for all of Argentina, and most of these teams are in Buenos Aires. The teams are mainly composed of physicians and a nurse. A team is defined as being made up of at least two different professionals; usually it is a physician and a nurse, or a physician and a psychologist, or a physician and a social worker. Many of these people are not paid for delivering this kind of care. They do it for free. They come to the hospital and volunteer from 10 to 20 hours a week in a palliative care program. The physicians work in different hospitals and even if they do not have beds of their own, they provide palliative care to patients on the various hospital wards.

How is your palliative care program staffed?

We have seven physicians, most of them working part-time, from 10 to 20 hours a week. Two physicians, including myself, work full-time, 40 hours a week. We have six or seven nurses working with us, one on each shift (there are three shifts on Monday through Friday, and two shifts on Saturday and Sunday). In addition, a psychologist comes here ten hours a week. The social worker is from the hospital, and she attends some of the team meetings and sees patients or the family when we refer them to her. A hospital chaplain works very closely with us. He comes to our team meeting weekly, and sees patients two or three times a week.

How long do people stay on your palliative care unit?

In general, not very long. We try to do a short period of hospitalization, between three and seven days. But, of course, we can have people here for two or three weeks. We also care for other people in the different wards at the other hospitals in the city throughout the year. The length of stay in the wards is sometimes longer, generally because of social reasons. That means that people could be at home if someone could be there to take care of them, but home care may not be available and the family may have to work—so they are at the hospital because of social and economic reasons, not medical ones.

Where do people die—mostly at home or in the hospital?

In Buenos Aires, they mainly die in the hospital. That is primarily because, even if you would like to be at home, if you cannot get medication or you cannot have the professionals supervise your treatment at home, people have to come to the hospital. This is not the same in other areas of Argentina. In the provinces and in smaller cities, such as San Nicolas, where Dr. Roberto Wenk has run a palliative care program for many years and where you do have some delivery of home care, approximately 70 percent of people die at home. This is exactly the opposite of what happens in Buenos Aires. Here in Buenos Aires, approximately 30 percent of our patients die at home and 70 percent die in the hospital.

Additional Factors Affecting Quality of Life

What other kinds of changes are needed in order to improve patients' quality of life?

First, improving access to palliative care. That would mean increasing the number of teams, the number of specific beds, and access to treatment, and strong opioids, in a very cheap way. Also having programs that would allow people to be cared for at home, which would mean developing the home care program further. And in the general hospitals that do not have specific palliative care teams, we need some policies that could allow people to be cared for in a more homey environment, with the family included in the treatment. What I mean here is that the family should be included as part of the unit of care and in setting the goals of treatment. There are still restrictions on visits and other kinds of things like that in many hospitals in Argentina. Also, the program for the children needs improvement—in many acute care hospitals, the children are not allowed to go and see their parents.

Do you allow that in your program?

Yes. Patients have no visitation limits. One more thing that is very important is to continue to work towards preventing what we would describe as "overtreatment." For example, delivering treatment that is clearly too aggressive or futile, including the admission of some patients to intensive care units who would not receive any benefit from that type of care.

In Argentina, are there ethical and legal concerns about withdrawing or withholding treatment from dying patients that affect decision making near the end of life?

Yes. Mostly because of presumed legal reasons, or some ethical reasons, but the reasons are not discussed in a very deep way. There are many physicians who are afraid of legal consequences if they do not continue to treat a patient who is clearly at the end of his or her life.

How do you measure your success in helping people to have good quality of life, even as they approach death?

We do not measure it in a structured way. We do a lot of different things, such as assess satisfaction from a certain period of time, but we do not do this on a regular basis. We have not accumulated direct evidence of satisfaction, but indirectly and anecdotally we know we are having an impact. For example, more than 90 percent of the families of our patients return to the hospital some days after the patient dies. They come to return all of the patient's left over medication, and they come to tell us how important the palliative care was. It's a kind of ritual, but it is spontaneous. Generally, they tell us how important it was to feel that they were supported and what they think about the care.

Bereavement Support

What kind of bereavement support do you give to family members after a patient dies?

We offer them the possibility of bereavement interviews with a psychologist in our group, and we also send a letter, one year after the death of the person. But, I would say, fewer than 5 percent of people continue with bereavement support after the death of the patient. One of the goals of treatment for the patient and family before death, is to prevent complicated grief. The fact that after the death, fewer than 5 percent of family members return for bereavement support on a regular basis may be related to effectiveness of our interventions. However, we also know that families find hard to return to the same place where their loved one died. So if they need specific bereavement support after the death, we believe families prefer some other place. The problem with providing bereavement support in the same center where the patient died is that it is often difficult for the family to come back and relive all the memories in the place where they have been with the patient while he or she was still alive. It is one of the limits of what we offer; even if they felt good about the support we provided, it is hard for the family to accept bereavement support here.

Are there community-based bereavement resources where people can obtain support?

There are independent bereavement support groups now available, but they are not well-known, even though some of them have been going on for more than five years. They are very good and very professional.

As someone who is familiar with the Edmonton program, can you tell us how that model may have influenced the way you are providing palliative care in Buenos Aires?

It continues to be our inspiration in terms of organization, and how they view palliative care, for example, in terms of providing care, doing research, and being very critical of their own results in order to try to improve different things. It is really the program we follow here. We have implemented many of their assessment tools, not only the Edmonton Symptom Assessment Scale, but also another one called the Edmonton Comfort Assessment Form, which we use during the last days of life, when the patient can no longer communicate or provide any more information. We also use the Edmonton Functional Assessment Tool, and many of the tools they have. These tools have focused our assessments and have enabled us to analyze what we do on a regular basis.

Is there anything about the Edmonton model that does not work as well in your own environment?

No, I would not say that. However, there may be cultural differences, for example, in relation to communication. In Argentina, people have more difficulty talking about their diagnosis of cancer and a poor prognosis, even though we are seeing a huge change in public attitudes about this in recent years. But in Canada, when one has a diagnosis of cancer, it is stated very clearly. Often there is a discussion with the patient and family about prognosis from the very beginning, in a very open way. Here, this probably takes a longer period of time to accomplish. In this hospital, more than 70 percent of our patients know their diagnosis at the first interview with us. That is a major change from the way it happened ten years ago in Argentina. But you still have to be very careful in providing information about diagnosis and prognosis, to allow people time to cope with that, and to accommodate the psychological and the cultural issues.

Do people prefer that you tell a member of the family rather than themselves?

Sometimes. Maybe ten years ago, I would have answered, yes, 100 percent. Now we ask the patient, "Would you like to discuss all the test results with us and what we think about the illness, or would you prefer us to speak with your family?" Sometimes the family asks the physician to protect the patient and not tell the patient what is happening. In that situation, the team tries to spend some time obtaining the family's confidence, to show that we are respecting their ways of communicating, but also showing what we believe would be important for the patient to know. We try not to simply follow what the family orders us to do, but we would not want to directly oppose them at the outset by saying, "Well, we have another point of view, and we are going to tell the patient what we think he or she must know." So, we usually take our time and go more slowly in those circumstances. Thus, the disclosure of the diagnosis and prognosis to the patient may take one or two weeks, which may be slower than other places.

Improving the Palliative Care Program

How are you continuing to try to improve your program?

We are trying to get more financial support, both from the government and from private sources. We currently have substantial support from a private foundation, Federación Médica de la Provincia de Buenos Aires, or FEMEBA. It is thanks to FEMEBA that our program exists, really. In addition, government funding also supports our program because we are based in a public hospital. FEMEBA is a foundation run by a federation of physicians, who work in the province of Buenos Aires. These physicians decided to create a program to teach health care professionals in a variety of domains including palliative care. They have a very important program for palliative care training called Programa Argentino de Medicina Paliativa, which included the creation of our palliative care unit at the Tornú Hospital as a clinical practice training center for health care professionals. Our unit was born through their support. We also try to raise funds for items the unit needs through the help of volunteers.

Another important goal is raising funds for research. Sometimes it is not easy, but we know we cannot run an effective palliative care unit without being critical about the knowledge we have, so we would like to obtain new data or new solutions, by doing research. For example, we are doing some multicenter clinical research with Dr. Eduardo Bruera. We are doing some descriptive research using all the assessment we do on a regular basis such as analyzing the symptoms patients have, the consumption of different opioids, where and how people die, where they spend the last 24 hours of life, or how frequently we have to use sedation for the last 24 hours, and so forth.

Are you doing any research to learn more about the spiritual or psychological needs of patients or some of the other aspects of quality of life?

We are doing a pilot study looking at suffering and discomfort at the end of life, when the patient cannot talk. We are comparing the impression the family had about the patient's suffering in the last days of life with the impression of suffering the physician and the nurse who cared for the patient had. We don't yet have all the data, but based on preliminary findings, we have an idea about the family's impressions. It's really interesting, yet not surprising, that the family members still perceive a huge amount of suffering, even if they have had support and the patient had generally good symptom control, which may be related sometimes simply to the fact that the patient is dying. They usually say they felt, "Well, I think she's suffering a lot," and when we ask why, the reason they give is, "because she's dying." So, there is probably a cultural aspect to their perceptions, a belief that if you are dying, you are suffering. In addition, although we did not ask family members about their own suffering, I think that may be one of the keys to the problem, because in describing a high amount of suffering of the patient, they are may be describing their own suffering.

In general, we are finding that the physicians think that patients are suffering less than the families think they are, which is not a surprise.

Do you try to address suffering in patients?

We try, a lot, with mixed results. Sometimes we think some situations are going well, and at other times we have the impression that, even if we put forth a lot of effort, the situation is not what we would like it to be. In some situations, we can feel a little frustrated and we must recognize the limits of the care provided. Sometimes there is a history of family problems and psychological problems that makes it very difficult for patients at the end of life.

Standards of Palliative Care

What is happening in Argentina right now to bring about improvements in palliative care?

All the people working in palliative care in Argentina have done a lot of work with the government, and as a result, this year we are seeing the beginnings of a change. The Minister of Health is going to create a set of standards for the function and organization of palliative care services. If these standards are accepted, this could mean that palliative care services would become generalized in a certain way, and clinicians and programs providing palliative care would know what benchmarks they are supposed to be reaching.

The standards apply to three levels of palliative care. On the primary care level, the standards recommend that any professional who is working with a patient in an advanced stage of disease, and who can show that he is well-trained and experienced in providing palliative care be paid for that kind of care and work in what we call a functional team. That means he or she would work in a team created just for that patient, in liaison with different professionals. The second and third levels of care refer to the composition of palliative care teams. On the second level, the standards recommend that there be at least three specialties involved in patient care, for example, a nurse, physician, and psychologist, or nurse, physician and social worker. The third level of care is the most intensive, defined by a complete team of caregivers and an inpatient palliative care unit.

These new standards of palliative care, created with various medical and other health professional associations, led to the inclusion of palliative care in the obligatory medical program [PMO: Programa Medico Obligatorio] or the baseline level of medical assistance that all systems that provide care must meet. That is to say that palliative care would become a required program or service in health care institutions. This new requirement is going to be implemented soon, probably next month. If that happens, it will be a big step forward. It would make the provision of palliative care obligatory at all levels of health care, including both private and public practice and so insurance companies would be required to pay for it. This mandate would come from the Ministry of Health and would affect all Argentinean health care institutions, professional associations, and payers.

This new inclusion of palliative care in the PMO or obligatory medical plan was accepted by all the health care professional associations, but the College of Pharmacies just made an amendment, putting in some details concerning their own practice. Initially, palliative care centers were defined in relation to the four basic disciplines working in palliative care: medicine, nursing, social work, and psychology. The pharmacists were considered as playing a supportive role in the program. The College of Pharmacies, however, have insisted that they are not a support, but are an integral and essential component—one of the basic disciplines that needs to be involved. I think this amendment is good; they are very necessary.

The standards were approved, we have put forth this pharmacy amendment and this could be accepted next month. At the moment, it is unclear whether the government will support these palliative care initiatives with funding, but it seems that they would be obliged to do so. I think we are overcoming a very difficult situation and this initiative will help in creating palliative care teams and putting money into palliative care.

What encouraged the Ministry of Health to support the standards and an obligatory palliative care initiative?

The whole palliative care movement, the years of conferences and statements of people working in the different medical societies have paved the way for this initiative. The Minister of Health finally said, "Well, yes, this is a problem. We have to think about it and to improve what we are doing." They asked representatives from different professional societies—nurses, physicians, social workers, psychologists, Argentine Medical Association, Asociación Argentina de Médicina y Cuidados Paliativos, etc., and they created a commission to advise the Minister of Health on all the scientific issues. This commission created the standards for palliative care after one year of work.

In summary, what do you think would help improve patients' quality of life near the end of life?

There are many things. First, I would say that we have to recognize the differences among patients, and try to adapt treatment to the specific needs of each patient. In order to provide personalized care, we must continue to remember and respect patients' autonomy. We must do this, because in Argentina many practitioners still have a paternalistic attitude toward patients. In addition, we really need more education for health care providers in palliative care, and we have to do more to inform the public about palliative care, because strong public support would make it much easier to implement palliative care programs. All of this would enable quality new palliative care programs to develop and deliver a high quality of care.

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