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

Using the STAS in a Palliative Care Unit in Cremona, Italy:
An Interview with Franco Toscani, MD

Dr. Franco Toscani has been a leader in the growing field of palliative care in Italy for almost twenty years. Here, he speaks about the use of Irene Higginson's Support Team Assessment Schedule, commonly known as the STAS, in both research and as an audit tool at the Palliative Care Unit he directs in Cremona, Italy. (Please click on the our interviewee's name to link to his biosketch and photo).[Citation: Toscani F. Using the STAS in a Palliative Care Unit in Cremona, Italy: An interview with Franco Toscani, by AL Romer, Innovations in End-of-Life Care, 2001;2(1), www.edc.org/lastacts]

To begin, please tell our readers what your clinical setting is like and what you do there.

The Palliative Care Unit is based in a middle-sized general hospital in Cremona, Italy, a city in a rural setting. This part of Italy is flat, like the Midwest of the United States. Our unit cares for a population of approximately 170,000 people living in our catchment area, including about 70,000 in the city of Cremona with the others in small villages. We are based in a hospital, but we also provide home palliative care. At the moment, we have no specialized inpatient hospice beds, but we hope that at the end of the coming year we will have some inpatient beds.

In the last 20 years, we have had no inpatient hospice beds in Italy, because our hospital organization and health organization didn't include hospice care. In Italy today, palliative care provides inpatient consultation for patients in hospital wards, outpatient service for patients who are ambulatory and can come here to the hospital, and home hospice care.

How many inpatient hospices are there now in Italy?

Now I think there are six or seven. There is one in Brescia, which is around 60 km from my city, and one in Milan. The oldest one is around ten years old, but it is a private organization and not a public hospital.

Would you say the prevailing model in Italy right now is palliative care units, which provide either outpatient or home care?

Yes, definitely.

What is your clinical specialty?

I am an anesthesiologist and I started with pain therapy. Around 20 years ago, I went to England to learn some techniques for pain therapy and for the first time in my life encountered the hospice model. This experience changed my life. That was at about the same time that most of the older palliative care services started in Italy. Prof. Ventafridda's palliative care service in Milan was the first, and the second was mine in Cremona. I started officially in 1982, one year after Prof. Ventafridda. I had begun caring for pain in cancer patients a couple of years before, but without any real knowledge.

Is your team in Cremona interdisciplinary?

That's right. We have two doctors, a colleague of mine and me, who are paid by the hospital, as members of the hospital's staff. We have three nurses and one social worker, who are also hospital staff. But we also have a private association, which gives us some resources that we use to pay other nurses and doctors and a psychologist for the home care. This association also provides some 40-45 volunteers who do counseling, as part of our home care services. So now, in the home care service, we have four nurses and one and one-half doctors, a part-time psychologist, and approximately 40-45 volunteers.

Are the palliative care services you provide available to everyone who lives in the area, as part of what the national health system offers?

In Cremona, the possibility to be cared for by our services is guaranteed for everyone and is completely free of charge. But it's not like this in most of Italy, because most Italian home care and palliative care were founded, like mine, through private association funds. So, palliative care services are not found everywhere.

Do patients get access to your services through a referral by a physician?

Yes. In Italy, the general practitioner can send patients to specialists or hospitals. And our services, like most palliative services in Italy, are actually specialist services. The services are based in the hospital, so the general practitioner refers the patient to our service like he would refer to any other specialist. So then, we provide care along with the general practitioner to patients at home; everything we do in the home is with the permission and assistance of the general practitioner.

Officially, we work as a team with the general practitioner. In reality, the general practitioner gives us free rein to care for the patient.

Can patients refer themselves for palliative care services, or does the general practitioner need to make that decision?

Well, they can decide that, and I think that no general practitioner would say no. Also, specialists on the hospital ward refer some patients to us. For instance, if a patient is in the hospital for some kind of therapy, and one of our colleagues thinks that the patient can benefit from our assistance, the specialist may consult with us.

Can you tell me why you chose Irene Higginson's STAS to audit the services you are providing and how you are using that measure?

Many years ago, I attended a congress somewhere in the north of Europe, where I met Irene Higginson and she presented the STAS (Support Team Assessment Schedule).¹ It looked very helpful, very good. Because we had no way of measuring what we were doing nor of standardizing the communication among the teams, we began using the STAS at my palliative care unit in Cremona. We also used the STAS as an outcome measure in a national survey to evaluate the care provided to patients in the last week of life.² So, we have used the STAS both for evaluation and for a systematic basis for discussion among the palliative care team to improve care .

Did you have to adapt the tool in any ways to fit the Italian culture and language?

Yes, we made a lot of changes. We started with the original STAS, which I believe had 14 items. And then we tried it with 17 items, but some items were not suitable for our local situation, because Italy is very different from England and very diverse. The situation can change; really, within 100 km there are completely different cultures. So, the STAS worked for me, but not necessarily for others in this country.

Which of the items in the STAS were most useful to you?

I can tell you what we're using. The names are probably not the same as in Irene's original instrument. We use the following items: Pain Control, Other Symptom Control, Anxiety, Family Anxiety, Patient Insight, Family Insight, and Practical Tools or Needs. Then we have Communication Between Patient and Family and Communication Among Professionals. We have split the last item in two, into Communication Between Professionals and Family, and Communication Between Professionals and Patient. We did this because we observed that sometimes there are conflicts in communication between family and patients. In Italy, many families wish to keep patients unaware of the prognosis and diagnosis. So, the patient wants to communicate with the staff about the illness, but the family doesn't want this to happen, so we have these types of conflicts.³

Then, we added two new items to the STAS for use in our palliative care unit. The first is the Family's Capacity for Understanding or Recognizing the Needs of the Patient. The second is Degree of Team Satisfaction.

What kind of training did you do initially to help your staff implement this tool and really understand what the patient thinks or what the family thinks?

We didn't do any formal training. We had a meeting and the team decided together to adopt this instrument. We read it, criticized and discussed it, made observations about it, and used it.

How many people at your palliative care unit use this tool?

Fifteen.

What does the team like about using this tool, and what do they, perhaps, have difficulty with in using it?

This is a very difficult question; there is a lot to say. I think that what the team liked most was that this instrument pushed us to audit our own practice. It was the first time we had organized an audit of what we do. This tool gave us a first rational way to criticize and consider our work. It was really very, very exciting and people were very happy to work with this instrument. We found that it was a very, very good way to work. The challenge of creating new items or eliminating other items was also a very interesting task. The team members felt that they were participating in something practical and useful.

Specifically, people felt that the STAS helped to organize our discussions, because prior to that, our discussions were very random. For instance, before using the STAS, we could spend one hour discussing one particular of a situation, and then we were out of time and we "ran over" other aspects of the care we provide. We felt that these less organized discussions were not a good, systematic way of working.

For which patients did you use the STAS?

All patients cared for at home.

Did you keep the record of the STAS in each individual medical record and then compare them?

Yes.

Did you use it as a tool to help you provide better care? For instance, when you observed a score not going down on a particular patient from week to week,⁴ would it prompt someone to say, "Something's wrong here. What can we do?"

Yes, of course, in some items. But, this is one of the criticisms we made of this instrument. Some items give you a very sensitive measure of changes in the patient. Some, however, don't give you this information in a very sensitive way. For example, if a patient has a problem in communication this week and has no problem next week, and no problem the following week, and again no problem the week after that, and then this week, the patient has a problem, that will give you the impression that something is happening. In contrast, the measure Other Symptom Control is much too broad. It should be much more precise. But if it is much more precise, it may be too time-consuming to use. That's one problem.

In one of the appendices of Irene Higginson's book, she does list a whole set of particular symptoms which can be added to the STAS.⁵ Are you using those as well?

No, I am just using the basic STAS. I would like to use the new instrument, the Palliative Care Outcome Scale (POS), later this year.⁶

To continue about the STAS, sometimes it does not run in line with our experience. For instance, we have used the supplemental or additional item on the spiritual aspect of care for about five years, but we have never had anything to say about this aspect of care. We have also had a chaplain on our team for many years, but probably, in Italy, spiritual habits are not the same as in the UK or the USA.

How do you try to evaluate the spiritual aspect?

Well, we actually have no idea how to evaluate it. I think that in Italy nobody has a very clear idea on this. We have very few professionals prepared and involved in spiritual care.⁷ For instance, we have had a chaplain who had experience in a hospice in London, but our organization of chaplains in Italy is very different. For example, it's not possible for a chaplain from the palliative care team to go to the home of a patient without permission of the parish priest. It becomes very complicated, as you can see.

Are these territorial issues?

That's right. And although Italy is a Catholic country, because of the particular position of the church in our society, it's very rare that someone will share his or her deep and private thoughts with the priest. Also, even people who claim to be religious often are not very happy to see a priest when they are seriously ill in the hospital. They may view a visit from a priest as worrisome or as a sign of bad luck. Visits from priests are associated with administering the sacrament of the sick, when the patient is unconscious. So, in my experience, priests are generally not welcome as a "carer" or a "friend" except in situations where the patient is actually dying. In Italy, most priests are not prepared for clinical, pastoral care.

Do you have any advice for clinicians working in palliative care services who might want to use the STAS to measure quality of care?

I am happy with the STAS. The most important advice I can give is to analyze and modify the instrument according to the actual situation, the actual culture, and the actual organization of the team. I don't think it's possible to import an instrument like this without any changes. Also, the process of changing the instrument is very important because it is an opportunity for understanding and thinking about what you're doing and for growing. Probably, the STAS alone is not sufficient for evaluating some situations; for instance, we are using a different instrument to measure quality of life.

What instruments are you using to measure quality of life?

We use the TIQ (Therapy Impact Questionnaire).⁸ That is the only quality of life instrument produced in Italy. My close friend, Dr. Marcello Tamburini developed this instrument and it was validated in a palliative care setting.

In contrast to the STAS, is the TIQ something that patients fill out themselves?

Yes. It is a self-report, but you can also ask the questions of the patients and write down their answers on the scale. We use the TIQ basically when we assess a patient or when new and different situations develop. We don't use a self-report instrument just to follow a situation that we can follow in another way because we feel that asking a patient to answer these questions is a burden. For most clinical analysis, our philosophy is that we check something only if we need an answer that can inform practical action. For example, we don't check blood cells just to know what's happening. We check the blood cells only if the patient has anemia, which could be caused by a loss of blood. So, we test his blood cells in order to see whether we should give him blood to help him recover from this weakness.

The same is true for our use of the TIQ. We would use it to inform not only a clinical intervention, but also a support or a psychological intervention. When we feel that there is something that we can do and we have access to what is happening to this patient, then we use the TIQ. However, the STAS audit is much easier, because it does not burden the patient. We also can use the STAS just for assessing and monitoring the development of a project, because this is a burden for us, but not for the patient.

Do you do the audit and report on your findings on every patient on a regular weekly basis?

Yes, every week. We hold two meetings for the entire team every week. In the first meeting, we discuss the STAS results.

How many patients do you have every week?

The prevalence is 12 or 13 patients per week, on average. Our team cares for 300 or 400 patients a year.

As you think about measuring quality of care and helping your staff do the best job they can do, what are your most pressing concerns right now?

I feel that evaluation and audit are critical. We have to evaluate what we are doing. Palliative care was bred within medicine because it looks promising and good, but you have to demonstrate that it is good, and you also have to give the instrument to others so that they can criticize what we are doing. We can't accept that palliative care is good by definition. This is the difference between science and something else. I don't know whether this is the case in the United States, but in Italy, this is a very critical point, because we are still seeking legitimacy with most of the other disciplines in medicine. So, one of our most important needs is to evaluate what we are doing. Especially at this moment, because two months ago, our government made a very large investment of money to provide palliative care throughout the country. So, we also have to demonstrate to the government that the money is well-used, what we need, and whether the funding is enough or not. So, I think we need to start a lot of studies for assessing the quality of the whole process. I don't think the STAS is enough for this. Probably we will have to develop or use some other instruments. This is one of the projects we are starting in the next weeks.

How much money did the Italian government allocate to establishing palliative care services throughout the country?

450 billion lira or roughly 238 million dollars. This is just a start-up investment in palliative care. This money was targeted for building and repairing hospitals, but now it is being allocated for building hospices. So this money is not sufficient to establish palliative care services, but in the government's next budget cycle, the need for more money for the organization of work and so on, will be discussed.

Which is more important and pressing now, from your perspective, developing good instruments, staff training or changing how people think?

Probably all! You have to remember for Italy, although palliative care actually is not young, officially it is just a baby, born two months ago, and we have a lot of resistance against palliative care. So, first of all, we have to assess palliative care because we have to demonstrate to our government what we are doing. Then, we have to demonstrate to the other specialists that we are doing something that no one else is able to do, in other words, that it is a necessary discipline. It is probably too early in Italy to speak about a palliative care specialty, although that is the direction we are going in.

But first, we have to persuade people to care, to speak about, and to work with the dying. We have to persuade people to accept the concept that people must control what happens to them when they are dying and that there must be open communication between clinicians and patients. We have to change the mentality, which is very, very different from that of Northern Europe or the United States. For instance, we now are creating a lot of hospices in Italy, because the government gave funds for that, and so in the future, probably every hospital will have a hospice, but what about the mentality? What about this hospice if the mentality of the people does not accept it? People say, "Oh, that is the home for dying. No, I don't want to go there, because people go there and die," or something like that. So, we have to change how people think about dying. Here in Cremona, we have had some success in changing how people think about dying, because we use volunteers and we have been working here for many years. But what about in a place where suddenly a service like this or a hospice starts up, where nobody is used to thinking about this? This is a very important point, because it can make the difference between starting and stopping forever.

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References:

1. To access a copy of the STAS, please go to Innovations' Resources and Tools page in this issue, where we have a link to Marcello Tamburini's Quality of Life Assessment in Medicine website. Readers can download the complete STAS and registration information from that website for free. [Return to International Perspectives]

2. Peruselli C, Di Giuilo P, Toscani F, Gallucci M, Brunelli C, Costantini M, Tamburini M, Paci E, Miccinesi G, Addington-Hall J, Higginson IJ. Home palliative care for terminal cancer patients: a survey on the final week of life. Palliative Medicine. 1999; 13:233-241.[Return to International Perspectives]

3. To read more about this issue, see the International Perspectives department in Innovations in End-of-Life Care, Vol. 1, No. 1, 1999 "Communication, Truth-telling and Advance Care Planning" found in the Archives which are accessible from the homepage of this website. [Return to International Perspectives]

4. In the STAS, where the names of each item refer to a potential problem, such as "patient anxiety" or "pain", a lower score on the 0-4 scale on a particular item indicates fewer problems or (0) indicates an absence of problems in that domain. [Return to International Perspectives]

5. Higginson IJ (ed.). Appendix B: Definitions and ratings for individual's symptoms which can be added to STAS. In Clinical Audit in Palliative Care. 182-186. Oxford: Radcliffe Medical Press, Ltd., 1993. [Return to International Perspectives]

6. Hearn J, Higginson IJ. On behalf of the Palliative Care Core Audit Project Advisory Group. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Quality in Health Care. 1999; 8:219-227.[Return to International Perspectives]

7. For more information on this topic, see the Featured Innovation in Innovations in End-of-Life Care, Vol.1, No.6, 1999, "Spirituality in End-of-Life Care", found in the Archives which are accessible from the homepage of this website. [Return to International Perspectives]

8. To access a copy of the TIQ, please go to Innovations' Resources and Tools page in this issue, where we have a link to Marcello Tamburini's Quality of Life Assessment in Medicine website. [Return to International Perspectives]