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

International Perspectives

Volunteerism in Italy:
An Interview with Claude Fusco Karmann

Ms. Fusco Karmann heads the Volunteer and Care Departments of the Milan section of the Italian League against Cancer as well as managing the Volunteer Training School. The Italian League, a national organization founded 70 years ago with 103 sections across Italy, has two main purposes: cancer prevention and health education, and providing assistance to persons with cancer. This non-profit group has had a presence in Milan for fifty years. Gianni Ravasi is the president of the Milan section and Laura Aguzzoli serves as director there. Due in part to the Italian League's lobbying efforts, the Italian government recently passed a law to fund palliative care and hospice through the national health system.¹

Ms. Fusco Karmann is in charge of the volunteer training and support effort as well as patient services at the Milan section of this organization. In the following interview, she speaks primarily about recruiting and retaining more than 700 adult volunteers who work in the Milan area to support the efforts of the Italian League. She also reflects on the idea of including adolescents in palliative care and hospice and whether this idea translates into the Italian health care setting. What follows are the edited comments from an interview with Ms. Fusco Karmann, which was conducted in French and translated by Associate Editor Anna L. Romer.² [Citation: Fusco Karmann C, Romer AL. Volunteerism in Italy: An interview with Claude Fusco Karmann. Innovations in End-of-Life Care, 2000;2(4), http://www2.edc.org/lastacts/archives/archivesJuly00/intlpersp.asp]

Tell us about the volunteer aspect of your organization.

In 1956, long before palliative home care came into being, several prominent women began a volunteer home care service. In 1984, we realized that we needed to upgrade and expand this traditional volunteer base with greater training and more structure so as to meet the goals of our organization.

Sixteen years ago, Marcello Tamburini, a psychologist who directs the Division of Psychology at the National Institute of Cancer in Milan, established this new volunteer program for the Italian League against Cancer. The new volunteer training school began with just ten students. We now train our own volunteers as well as those from neighboring associations without the necessary resources to do so. At this point, we have an army of volunteers to help us accomplish our mission. We have very few paid staff in each of the sections of the Italian League and it is thanks to the volunteers that we get our work done. We have approximately 5,000 volunteers across Italy, which includes a group of 773 volunteers right now in Milan. The exact number fluctuates, with an average of about 700 volunteers in the Milan section.

Our school has been quite successful in Italy. People consult us regularly about how it works and request information about the process of training volunteers. This interest led to the establishment of a second wing of the school—to train new non-profit volunteer-based cancer associations in management and organizational behavior. We run an annual course for all the Italian non-profit volunteer-based cancer associations and even the Swiss-Italian ones participate in our courses in order to improve their management skills and general preparation as a volunteer organization.

What do you mean by preparation?

We developed a course on management, communication and crisis management. This course has two sides to it; one side deals with the association from the point of view of its management and the other from the point of view of staff. We look at the same problem from the volunteer's point of view, from the patient's point of view—and try to answer some of the following questions. How does this problem affect all the people in it? If an association is in crisis, how does it resolve the crisis? If a group of volunteers is in crisis, what led to this situation? How does the group resolve the crisis? We always deal with problems on these two levels: systems management and the interpersonal level.

At the same time, we organized consensus conferences on the subjects that were of greatest interest to us, and in collaboration with participating organizations, we produced a curriculum for training volunteers as well as a code of conduct for volunteers.^3,4

Describe the volunteer recruitment and selection process.

During the year we receive about 400 volunteer requests from both the city of Milan and the province of Milan, a region of approximately 3.7 million inhabitants. We have a rather rigid selection process whereby about a quarter of these candidates are picked to go through the volunteer training process.

How do you select the volunteers?

There are two rounds of selection. When we receive a request to volunteer, we send out a letter describing the criteria for participation. Candidates who do not conform to our requirements do not come to the general information meeting.

What are the criteria for participation?

• Volunteers must be between 18 and 65 years old.
• We do not accept medical or nursing students or students training to be psychologists because we believe that in working in a professional health care team, the volunteer needs to be a professional volunteer, with a distinct role in every day life. We want the volunteers to be able to work as a team with fellow volunteers and with the caregivers from the health care team.
• We also ask that volunteers not have a close family member who is terminally ill with cancer. In that case, we fear that the volunteer may be coming to us in search of ways to care for his or her family member rather than with the goal of helping others. We prefer to support this person in his or her family caregiving and to help this person during this stage of the illness. Later, he or she can become a volunteer. We consider a family member ready to volunteer after a year of mourning.
• We ask that volunteers give us either two half-days of time per week, one long evening or one night per week. We don't set a time frame for how long they must volunteer. We generally replace 10 percent of our volunteers each year.
• Lastly, we do not wish our volunteers to be cancer survivors. There exist other self-help organizations made up of cancer survivors in Italy already. For ourselves, we thought it better not to recruit cancer survivors given that our volunteers often have to spend time with dying patients.

What is your reasoning here ?

There are already organizations for cancer survivors—breast cancer or throat cancer survivors—and these organizations have support groups for patients during rehabilitation after an intervention. We prefer to train people to provide support and companionship to patients at all stages of the illness. We seek those persons who are balanced and won't have to relive difficult experiences that they have already undergone with the risk of disrupting their equilibrium.

Once the volunteer applicants pass the initial criteria, do you have other steps to becoming a volunteer? How many of the 400 people who indicated an interest in volunteering remain ?

There are usually about 200 candidates left and only half of these are accepted as volunteers based on the test, the MMPI (Minnesota Multiphasic Personality Inventory) and the interview we do with each candidate. A psychologist interviews each candidate individually for an hour.

What are you looking for in the interview?

We are looking to understand the candidate's motivation. Why does this person wish to help patients suffering from cancer? We believe that this is one of the most difficult branches of volunteering and so we want to be sure that this interest is truly grounded in a spirit of solidarity with others. We wish to screen out those persons who are looking to resolve a personal problem or suffer from hypochondria, or might be drawn to volunteering because of a lack of interest in their own life.

We work on this all year long with our team of 12 psychologists, three of whom specialize in the selection process. Selecting the volunteers is a full-time job from October through December each year.

What kinds of people end up in your pool of 100 new volunteers each year?

Seventy-eight percent of our volunteers are women, 22 percent are men. And 45 percent of this group is between the ages of 40 and 50. Many of the women no longer have young children, and are not working outside the home. In Italy, we also have many teachers who only work in the morning. In addition, many people retire at a young age—say 50-55, and they no longer have anything to do. So, instead of playing cards in the cafe, they prefer to work as volunteers with us. In Italy, one can retire after a particular number of years of work, sometimes 20, or at a maximum after 35 years of work, rather than at a particular age, as it is in other countries. This policy has allowed many to retire at age 50.

Training

How many people do you train in Milan? How long does the course last?

Our annual training course is 32 hours long and we train 100 to 130 people per year.

Until now, the training took place during two 2-hour evening sessions per week, in other words, four hours per week over the course of eight weeks. This year, we are changing everything and will be trying to run the same curriculum in four full days of training from 9:00 am to 4:30 pm. The reason for this change is that many of the volunteers are coming from some distance and it has been difficult for them to come to Milan twice a week over two and a half months. This time, we will be running the training for a full day, one day per week, four times over the course of a month.

Please describe the course.

The course itself is designed to provide information and to encourage self-reflection on the key themes: death, one's attitude toward death and illness, the family, teamwork, the role of volunteers, and on ethical and spiritual aspects across different religious traditions. In Italy, we now have more foreigners so we are also including more information on diverse cultural and religious practices. The class lasts for two hours and so there is time for an introduction to the topic, a time for reflection, and then sharing observations on the topic. We are dealing with 130 persons, so we can't organize interactive working groups with simulations. We don't do small group work in the course; however, our psychologists have designed these sessions and have come up with ways of provoking discussion on these topics even in a large group, so, these sessions are quite interactive.

What kinds of exercises have they constructed?

For example, during the session about "the family," the trainer asks the volunteers to designate an animal to represent each member of their family of origin as a way of exploring their role in that family. They then ask the volunteers to repeat the exercise with their current families in mind. The hope is to get all the participants to reflect on family dynamics and the different roles family members play. To explore tacit assumptions about death and dying, the psychologist asks volunteers to brainstorm words that cancer, death, pain, illness, etc. evoke for them and then puts those words on the board. Later the group organizes these responses and discusses them. In this way, we hope that participants gain greater awareness of their own attitudes about illness and death.

The goal of the volunteer training course is to touch on all the key topics, which will then be revisited during supervision and practice. The training allows for a moment of making contact, for reflection on these themes and a summary knowledge of illness and palliative care. We cover these topics quickly and only attempt to give basic information on these subjects. Our main goal is to get volunteers to begin to examine their own ways of responding and their own role in the process of providing care to those near the end of life.

Volunteer Roles and Responsibilities

What kinds of activities do the volunteers engage in?

Our volunteers do all kinds of things. Three quarters of them offer some kind of direct care with patients. Some volunteers work in the hospital. We have 200 volunteers at the National Cancer Institute of Milan [a nationally prominent comprehensive cancer care center] as well as others in the three hospices in Milan and the surrounding area. We have also placed some volunteers in the oncology departments of two other hospitals. Some volunteers help out by transporting patients to and from the hospital for their radiotherapy or chemotherapy appointments.

We have two main roles for volunteers who are located at the Cancer Institute of Milan. The first role is that of guide and general source of information. These volunteers are in the lobby of the hospital and in all the departments. They accompany patients and families and give them any necessary information to facilitate their visit. The second group of volunteers in the hospital work on the wards, and help the hospitalized patients in a thousand small ways. They don't usually help feed patients in this hospital, but in others they do that as well. There is a third group of entertainment volunteers, who create performances of some sort for the patients every two weeks. They also spend time with patients.

Do the volunteers who are based in the hospital provide less psychological or physical help than those who provide home care?

No. On the wards in the hospital, they provide a great deal of informal psychological support. They go from room to room, speak with patients and attend to their needs. If a volunteer becomes aware of a social or economic need, they let us know. In the hospices, we have volunteers on duty 24-hours a day and they collaborate closely with the healthcare team, as well as providing bereavement support to the families.

If volunteers become aware of a problem with a patient in a hospital setting, whom do they consult?

If it is an urgent problem, they would come to me. But if it is simply an issue of communication or some specific interaction, then the volunteer will bring it up at the support/supervision meeting, which occurs every three weeks.

Do volunteers take on multiple roles or do they specialize and do one type of activity at a time?

Generally, the volunteers serve in one role at a time. We do ask that all volunteers help us with our fund-raising efforts, however. Otherwise, those who have chosen to work in the hospital stay there and if they want to switch settings, we do change their assignments, but we ask that they complete one year of activity in a particular setting before moving to another.

What is the distribution of volunteers across the different kinds of settings and tasks?

Approximately 580 volunteers offer direct patient or family contact; of those about 250 are in hospitals, 80 are transporting patients, 170 are doing some kind of home care, and 80 are involved in our 18 early diagnosis consulting rooms, which are situated across the province of Milan. The volunteers in this last group receive visitors and give information about our activities. The remaining 100+ volunteers help us in our offices and with our fund-raising efforts.

Volunteers and Home Care

Twenty years ago, we developed in partnership with the Floriani Foundation, a home care service for palliative care. When a patient is sick at home, volunteers can be part of the palliative care home care team, which consists of the doctor, nurse, social worker, physiotherapist, etc. We find it harder to recruit volunteers to do home visits. Our experience is that going into a family's home requires more particular skills. Families do not tend to request volunteers in Italy. Here, family is very present and able and willing to perform the tasks a volunteer might perform, so family members are less likely to request volunteer services. This means that when we do send out a volunteer, it tends to be in more extreme, sometimes difficult, situations. For example, a volunteer might be called in to help out in more dysfunctional family situations, where family members may have a drug addiction problem, or if the family is impoverished and does not have sufficient resources to deal with the illness. We send volunteers into some challenging situations and they need courage and stamina to handle them.

Is there any kind of stigma attached to receiving a volunteer to assist with home care given this situation you are describing?

No. If the nurse tells the family that the volunteer will be coming, that the volunteer is not asking for anything or demanding any kind of payment, and that we can guarantee the probity of the volunteer, it reassures the family. Families are suspicious of volunteers, so the nurse needs to explain what the volunteer can contribute and once the volunteer meets the family, we usually find that breaks the ice. Without the substantial contribution of volunteers, we would not be able to care for some of these patients at home.

So how does it work, in terms of the volunteer making home visits—does a volunteer go alone to the home and decide what needs doing?

The nurse assesses the situation, the nurse and the doctor that is, and then at the weekly team meeting, they review the situation and ask the volunteer coordinator to choose an appropriate volunteer. The volunteer then accompanies the nurse on the first visit to this family or patient. In this way, the nurse introduces the volunteer to the situation.

What kinds of tasks do the home care volunteers perform?

Volunteers do a number of things in the home. They offer psychological support, practical support and their presence can temporarily improve the family dynamics around the patient. The volunteer attempts to do what seems to need doing. If he or she finds a dying patient who needs someone to hold his or her hand, and no one else in the home is willing to do this, that's what the volunteer does. But if the volunteer sees that the house needs picking up, there is ironing or cooking to do, or children that need to be taken to school, or that someone needs to go to the drug store to pick up the patient's medicine, or some other errands need to be run, then the volunteer does them. Some volunteers don't like to see the physical side of dying and prefer not to help the nurse with the physical caregiving.

Are volunteers allowed to participate in caregiving?

Volunteers are allowed to help the nurse with physical caregiving, but cannot provide nursing care on their own. Those volunteers who wish to are allowed to help nurses move or lift patients, and bathe patients. Otherwise, volunteers may do anything that needs doing.

Do the volunteers participate in the weekly team meetings?

It depends on the team. Some teams have many members and it would be too much. Also, we already ask the volunteers to attend supervision groups every three weeks, so we don't want to fill up too much of their time with meetings. We prefer to have them invest their time in practical aid to patients. It is the coordinator who attends these team meetings and then conveys the information to the chosen volunteer.

How do these support meetings for volunteers work?

Ten to 12 volunteers take part in each support meeting, which occurs every three weeks. These meetings last about two hours.

Who runs these meetings?

The coordinator is also a volunteer who has been chosen by the group. One person assumes the coordinator role for two years and then it passes to another volunteer. The coordinator leads the first part of the meeting, which deals with practical matters and logistics. Then the psychologist leads the last hour and a half of the meeting. The psychologist works with the volunteers to choose topics to address over the year, which will deepen their knowledge and understanding of how to communicate with patients and families. The focus of these meetings is to deal with any issues that come up while volunteering with patients and families, to enhance volunteers' savoir être, i.e., way of being with patients and families through education and self-reflection, and to support volunteers engaged in this challenging work.

You mention that volunteers work in three hospices in the Milan area. Can you explain what you mean by the word hospice since it does not always translate literally.

I am using the word hospice in the English sense of the word. The hospices or palliative care centers are very recent in Italy. They currently care for a large portion of patients suffering from cancer and patients in the final phase of AIDS. These hospices are connected to palliative care home care teams, which are based in the hospital, for example, at the Cancer Institute of Milan. The Cancer Institute of Milan does not currently have a hospice, but rather has a four-bed palliative care service, an outpatient palliative care clinic, and a home care team. Recently a law was passed requiring that hospice and palliative care centers be available all across Italy. So, our volunteers work in a wide variety of settings. Here at the Cancer Institute of Milan, people come to have their cancers removed, some die and some are cured. It is an enormous hospital and we have 200 volunteers here.

Additional Support Services for Cancer Patients

I also direct the support services for cancer patients, quite apart from the volunteer services. We provide about 6,000 interventions per year to support patients. These services range from economic support, for example if the patient has lost his or her job, to social support, or help negotiating the system, such as acquiring sickness certificates, which give patients access to a set financial benefit provided by the national social security system for patients with cancer, who have undergone major surgical interventions.

Financing: Costs to patients

These services are free. Patients can pay an additional fee if they wish to have a private room when they are hospitalized or if they want to be hospitalized in a private clinic, or if they want a very particular treatment and have private insurance. Medication that is necessary for treatment of the cancer is covered for everyone.

So, you coordinate both the volunteer effort and the paid support services for patients and families.

Exactly. I get together with all the volunteer coordinators, which is a group of twenty persons, and we meet every month with a psychologist where we work on leadership skills, and developing an awareness of group dynamics. These coordinators are all volunteers themselves.

Is there a long tradition of volunteerism in Italy?

Yes, this tradition dates back to the 13^th century with Misericorde, which was the first Italian volunteer organization, which still exists today. We have a substantial religious volunteer force in Italy, which is involved in many areas of life. Our group, the Italian League Against Cancer, is a secular group.

How do physicians and nurses perceive the volunteers?

We did a study to answer this question and found that physicians and nurses accepted them very well.⁵ During the month of August [traditional month for vacation in all of Europe] when everyone goes away, all the remaining staff complain because there are no volunteers to help them. The volunteers are an additional workforce that is much appreciated.

Measuring the value of volunteer training and services

Have you evaluated the effects of volunteering on either the volunteers themselves or on the patients and families, in any way? What would you like to measure or evaluate?

We are very interested in questions of evaluation and finding a mechanism to judge if we are on the right path or not, or if we need to make a mid-course correction. We do evaluate our training courses by distributing anonymous feedback questionnaires. We ask the participants to assess the interest, their comprehension, the teacher's skills, the organization of the course, etc.

Volunteer Longevity

Each year we celebrate the contributions of our volunteers. To give you an idea of the commitment of some of our volunteers, each year at these festivities we give 10-15 medals to volunteers to mark their 20-year anniversary of involvement. Last year, we had 80 medals, 45 were for 5 years of activity and the rest were marking 10 and 20-year anniversaries of active volunteering. We are extremely proud of our program because we have some extraordinary volunteers. I admire them myself as I don't know that I could do what they do.

The Inclusion of Adolescents among Volunteers

What about the idea of incorporating teenagers into the volunteer effort in Italy?

I find the idea admirable. It is a good idea, but not practicable in Italy at the moment, as we have a law that requires volunteers to be at least 18 years old [the age of legal majority in Italy]. Volunteers must also be insured, and we could insure minors, but we couldn't legally have volunteers who are minors.

If it weren't for the law, would this kind of effort interest you?

I would have to say, I don't know. I have had young volunteers, those who are 18, 19, 20. And I realized that young people can have a very beneficial effect on elderly patients who are gravely ill. So, I have had some very positive experiences with young volunteers. But one of the disadvantages that we have noticed is that young people do not volunteer for long. They come, they stay for awhile, a few months, and then they leave because they are going to university or they fall in love and they stop volunteering ! It is true. We invest a lot of money in our rigorous selection process, and so we pay attention to these details. Over the course of 16 years of working with volunteers, I can only remember 5 or 6 young people, who were wonderful volunteers and remained committed over a longer period of time. I will never forget them. When a young volunteer is committed and continues to volunteer they are often better than more mature adults. They are more balanced, less fearful about what might happen to the patient and more fatalistic. They don't seem to be afraid of death, or don't seem to think of it and so they are able to face the task of keeping the dying patient company with a positive attitude, which benefits the patient.

Let me say, however, we have very few young people who show an interest in volunteering. I don't know that I could invest in a similar program, given our experience with attrition among this group of volunteers. It is interesting, however, and maybe this will inspire us to try something new to include young volunteers.

Given your long experience, including that with young volunteers, what would you advise others about the recruitment, selection and training of young people? Are there important differences in training, for example, compared to training middle-aged volunteers?

In recruiting young people, you have to make them understand that this is a serious activity, not just a pastime. You have to be deeply motivated to become a volunteer. So, you need to find a way to assess motivation and attract those young people who won't stop when they hit the first difficulties. I have had young people enter the program, take part in the raining, put on their volunteer jackets for the first time, go to their assigned department in the hospital, and come back down, turn in their jacket, and leave because they hadn't understood what this was all about. So, I recommend finding ways to promote reflection among the young volunteers so that they understand what they are getting into, and that if they commit to volunteering to work in hospice or palliative care, they make a commitment to stay involved for a period of time.

Would it be possible to have a less intensive training or selection process for the younger volunteers—in a sense what you are asking for is paradoxical. What the American hospice leaders who recruit young people have found is that often the young people don't know and can't know in advance what it is that they are becoming involved in. The act of getting to know these dying patients or even just doing useful things for these people seems to help some of these teens understand themselves and appreciate the potential of volunteering in new ways.

Yes, we could perhaps ask them about what they already know how to do, and find ways to call on those strengths. In the end, the training has to fall on fertile ground; it is not the training that makes the volunteer. A person decides to become a volunteer and the training can help improve some skills. So, if we started with what the young people already know how to do and inquired about their motivation to help others, then we could offer a shorter, less time-intensive training. It would then be just a question of getting them organized.

Would such a program be welcome in Italy?

That's a difficult question. I don't know. I would have to see the results of these American efforts. We are always learning from each other, so if the results seem to merit it, then we could also try something here. It is a new idea and it is hard to know how it would play out here.

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References:

1. See Using the STAS in a Palliative Care Unit in Cremona, Italy: An interview with Franco Toscani. Innovations in End-of-Life Care. 2000;2(1).[Return to International Perspectives]

2. I would like to thank Damien Botton, who transcribed the interview conducted in French and served as linguistic consultant to me in preparing the interview and then translating it.[Return to International Perspectives]

3. Fusco Karmann C, Gangeri L, Tamburini M, Tinini G. Italian consensus on a curriculum for volunteer training in oncology. Journal of Pain and Symptom Management. 1966;12(1):39-46.[Return to International Perspectives]

4. Fusco Karmann C, Tamburini M, Suprani A, Santosuosso A. The code of conduct of the volunteer. Supportive Care in Cancer. 1998;6(2):120-4.[Return to International Perspectives]

5. Fusco Karmann C, Tamburini M. Volunteers in hospital and home care: A precious resource. Tumori. 1994;80(4):269-72.[Return to International Perspectives]