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

An Interview with Sandra Mahood, BA Ed.

In this issue of Innovations, we are featuring another Circle of Life Award winning program: The Hospice of the Florida Suncoast. The May-June issue of Innovations offered an overview of the award and its winning programs. Read a description of the full range of programming at The Hospice of the Florida Suncoast. Hospice of the Florida Suncoast is a large organization with an average daily census of 1250 patients; currently 2800 volunteers serve in a range of programs. Located in Pinellas County, Florida where a quarter of the population is 65-years old or older, this hospice is unusual in the degree to which they have collaborated successfully with a wide variety of community institutions to integrate care of the dying into the life of the community. In this issue, we are highlighting their efforts to recruit high school students to support the activities of the hospice in a variety of ways.

Here Sandra Mahood, Hospice Volunteer Partnership Programs Coordinator, who directs the Hospice Teen Volunteer (HTV) Program, describes the challenges to recruiting and retaining teens as well as the benefits to teens and patients when this partnership succeeds. Begun in 1994, the Florida Suncoast HTV program is unique in its size and scope, with more than 250 adolescent volunteers. One of the secrets to these high numbers has been the successful collaboration with special programs in area high schools, which require service-learning in order to graduate. At those schools, students benefit from monthly, student-run hospice council meetings with in-services and opportunities to meet with other teens who are volunteering as a sanctioned after-school activity. All teen volunteers are linked to staff volunteer coordinators who run optional intergenerational monthly volunteer support meetings. Teens who do not attend high schools with existing programs depend on monthly phone calls with the volunteer coordinator as their main means of support.[Citation: Mahood S. The Hospice Teen Volunteer Program at The Hospice of the Florida Suncoast: An interview with Sandra Mahood, by AL Romer, Innovations in End-of-Life Care, 2001;2(4), www.edc.org/lastacts]

What inspired staff at the Hospice of the Florida Suncoast to recruit teenage volunteers?

In 1994, only six years ago, we took advantage of a grant opportunity. For the first time, the Juvenile Welfare Board of Pinellas County released some funds for intergenerational programming. Their goal was to encourage community members to give opportunities for different generations to get to know and serve one another. Our volunteer program had been just adults mainly older adults, retired people, or people who had been served by hospice. We had not had adolescents serving patients and families directly. Yet, we believed that there was a place for young people to serve in hospice, and so we applied for and received the funding.

Our goal was to find a target group of high school students and train them to work with patients in a variety of ways. We identified one high school that was right next door to our main office. This high school also happened to be a magnet school with a focus on offering students opportunities to explore a variety of careers, which seemed like a good match for a hospice given that we always work in interdisciplinary teams. We approached the administration of the high school to partner with us on this first grant. That first year we recruited about twenty students whom we trained and who then volunteered with patients at Woodside, our sixty-seven bed residential hospice. We saw that first group as a pilot. We wanted to see how bringing these two generations together would work.

In designing the teen volunteer program, early on we established an advisory committee. The advisory committee includes all the key stakeholders: hospice people, school people, nursing home people, parents, and students. I invited staff from the schools where we have the formalized programs; for example, the teacher who serves as the hospice sponsor or liaison. I also invited administration from the schools, such as an assistant principal, a parent representative, and student representatives from selected high schools. When the nursing homes became involved, we invited the activities directors to serve on the advisory committee and it has been a way for them to keep us informed about what works well and less well with teen volunteers. I also included people from other programs within hospice. So, the director of our child and family support program — that's the children's hospice and bereavement program. would be invited as well as someone from our hospice residence. Basically, we want to hear from all the people whom we need to be involved in order for the program to be successful. We need their involvement, their opinions, and their evaluation and help in planning.

What did you learn from the pilot?

We learned about a number of practical barriers: the need for transportation, structure, and supervision. During the initial pilot, we actually transported students to and from the hospice as a part of their school curriculum and all the students remained involved. After the initial pilot, we lost some teen volunteers because of the distance from their homes to Woodside.

We added the nursing home component during the second year. Most of the students have a nursing home in their neighborhood, and our hospice serves many nursing home patients. Having the setting close to home so that students could ride a bike or walk eliminated the barrier of lack of transportation. The option of volunteering in a nursing home has been a very good choice, especially for younger students.

We have learned that the nursing home or hospice residence can be the best placement for younger students. These younger volunteers often need some real structure and support in their volunteer setting. Going into a nursing home is a natural match because they can visit with the hospice patient or patients to whom they are assigned. However, there are other adults there, namely the activities director who can guide the teen to some other constructive activity if the hospice patient is asleep or indisposed at the time of the visit. So then it becomes a real win-win, because our volunteers, who are trained to go into the nursing home and support our program and our patients, can also be of help and visit other residents in the nursing home. And it gives the teen volunteers someone to consult with on-site because our volunteer coordinator can't be present in all of the nursing homes. The patient also benefits from this structure and support during the student's visit.

We've learned as we've gone along. We didn't start out with this current arrangement with the activities director. But sometimes a teen would go into the nursing home, and the patient would be sound asleep, or just not feeling very well that day, and the visit would be very short. And here is a student who has traveled to the nursing home, planning on spending an hour or two hours with his or her patient. Now that student can go and serve someone else. So this collaboration has worked very well.

We've also learned to allow students to volunteer in pairs. Teens are social. And sometimes they feel unsure of themselves, just like adults do, but even more so. Going into a new place can be daunting. Going with a friend can make students feel more comfortable and confident. Also, once they've gotten started, if one student has a time conflict, the other one can go. At first some staff were reluctant to send teens in pairs because of the concern that the teens would focus on each other and fool around. But that has not been the case.

Now that you have an established program, how do you recruit strong teen volunteers?

Students come to us in several ways. They might pick up a brochure at their high school or at a community center and fill that out. Or they or their parents might call the office to inquire about volunteering. They might hear about the program from friends and peers at school who are already working as hospice volunteers. Some teens are sent by juvenile court to perform a specific number of hours of community service.

What kind of screening is involved?

I do a telephone interview with the student using an intake form. I ask the student some of the following questions: How did you hear about hospice? Why do you think you'd like to get involved? What are your goals for this? What experiences are you looking for? Have you lost a close family member or friend within the last year? Do your parents support your decision to do this? Do you have transportation available to get to the training and to your placement? So we talk about their motivation and ability to participate. I talk with interested young people about their choices for training, and for placement after training, and then register them for a volunteer training class.

We ask any potential volunteer (teen or adult) who has lost an immediate family member or loved one within a year to visit with a hospice counselor to discuss this loss and where he or she is in the grief process. We understand that readiness is particular and no one time guideline works for all, so we altered our earlier policy of waiting for a full year of mourning before allowing people to volunteer. We also offer our bereavement services to newly bereaved potential volunteers.

What kinds of activities do juveniles sent by the court become involved in?

We assign all persons adjudicated to community service by the court — not just teens — to the thrift store. Most of these people have had traffic violations, a misdemeanor, or a minor kind of violation. They need to do X number of hours of community service within a very limited time period. They don't have the time to go through the necessary screening and training in order to work in the office or to visit patients. People sent to us via the court system don't handle money at the thrift store; they accept donations, put items out, and help load people's cars. But at the same time we take the opportunity to say to the person, "When you're done with your service, we'd like to tell you more about hospice. Would you like to come to a volunteer orientation class? Or a training class? Would you like to get involved?" And we have had people who have stayed afterwards and trained.

What kind of training do you do with teens?

We offer two levels of training. The minimum is a 3-hour orientation, which would prepare the teens to be involved in support kinds of activities such as working in our office or thrift store. For students who wish to have direct patient and family contact, we require an 18-hour curriculum called Patient and Family Support Training. Topics covered in the longer curriculum include communication skills, the interdisciplinary team, personal loss awareness, ethics and patient advocacy, information about standard precautions, special populations, pain and symptom management and the volunteer's role in spiritual care, psychosocial grief, and bereavement. Hospice nurses, social workers, volunteer coordinators and other team members participate in the training.

Volunteers complete a one-page written evaluation at the end of every training with two open-ended questions about the key messages and how to improve the training, and a Likert scale checklist about the content and process of the training. In addition, once volunteers (both teens and adults) complete the training, a volunteer coordinator conducts a one-on-one interview with that new volunteer. The goal of the interview is two-fold: 1. To assess the quality and effect of the training, i.e., what did this person gain from the training? Is this person ready to have direct contact with patients and families? 2. To assess the new volunteer's interests and skills so as to assist the coordinator in making a good patient and/or family "match."

I would say probably 75 percent are actively seeing patients or families and so are involved in some kind of direct service. The remaining 25 percent are doing special events, office work, thrift store kinds of things. Some of the teens do both kinds of activities — see patients but also work in an office, do a fashion show, or whatever. Of the 75 percent who are seeing patients and/or families, the majority are either in the nursing home or hospice residence. A smaller number are seeing patients and families in the home setting, most of the time to support children in those homes. We don't really have teens going into patients. homes and providing respite for a patient while the caregiver goes out, like the adults often do, and we generally don't have teens running errands for families. We never have teens transporting patients and families. Due to auto liability restrictions, volunteers have to be 18 years old to transport patients.

For a first visit, whether it is to see a patient in a nursing home or to visit with a child in his or her home, the volunteer coordinator or an experienced adult volunteer accompanies the teen volunteer. In the case of a visit to a child, it would be the social worker who already knows the child. This adult helps set the tone and establish what is expected from the teen as well as confirming the family's needs and expectations for the teen volunteer.

So in the home setting, it's mainly to see a child in that home, and most of the time it is a well child whose mom, dad, grandparent or sibling is a patient. Sometimes a teen volunteer will visit a child who is being seen by a counselor through our bereavement services because someone has died in his or her family. In these instances, when teen volunteers are paired with one of these children, the teen goes in to help with homework, play on the computer or just visit. The teen volunteer is spending time together with the child as a friend. We have had a very few instances, and they were really very carefully matched and selected, in which a teen has visited a pediatric patient.

We have the largest number of students in the nursing home program because that's the area of greatest need. There are lots of older patients who are lonely and really love having a young person come in. The hospice patients are dying. But the students assigned to a hospice patient might also drop in to visit other residents of the nursing home.

One particular activity in which teens have been integrated successfully is in conducting Life Reviews with patients. Teens interview patients about their lives and record their memories either on video or in a photo journal (scrap book) or in a written journal format. In fact, we're continuing to train for the video project because we're getting a lot of requests for that and for the photo journals. We're getting ready to do two more training classes this summer, and this time the teens are going to do the training. I'm going to be there just to watch and facilitate. The teen trainers will be teaching other teens about every step in the process: how to interview, use the video camera, etc.

Do you ever have more requests for specific kinds of placements by teens than you can accommodate?

The only area where we have more students who want to be involved than there are opportunities, thus far, has been in the children's hospice and bereavement program because, thankfully, most of our need for volunteers at hospice is for adults. For teens to be with kids is just a natural fit. They like that. They think it sounds like fun. Many of the teens in training ask to be with a child. What I say to them is, "That's good information. I need to know that that is really what you're hoping to do, but I don't want to promise you right away that you'll have a placement with a child. Would you be willing to go into a nursing home? Or into a hospice house?"

What kind of time requirement do you make on teen volunteers once they've been trained?

It's not a stringent requirement, as such. We really work with the students and their schedules. We do ask them to commit to going regularly, as in once a week, to visit a patient. But depending on how the patient is doing, and also the student's schedule, one week the student might spend an hour, and the next week he or she might spend three. That's okay. We work around the students' schedules, and also how the patient is doing.

What kind of documentation of patient contact do you expect of students?

When students make a visit, they fill out a volunteer report form, just as our adult volunteers do. That documentation then goes into the patient's chart.

Do the teen volunteers do that on-site?

Well, usually they do it at home and then mail it in. We give them the forms and return postage paid envelopes. It is a challenge, just as it is with adult volunteers. Some students are great about documenting. Other students we have to call, and remind, and follow up. By and large, they are fairly good about documenting.

What hospice staff members are involved in the support and supervision of teen volunteers?

I am the paid coordinator for the teen program. However, I'm not the only one who supervises the teens, because once we have recruited and trained them, they are placed on a team. So the teens also have the support of that individual team's volunteer coordinator. Because our hospice is so large (2800 adult and teen volunteers), we have fifteen paid volunteer coordinators.

What kinds of support and supervision do you provide teen volunteers?

We start out with more support and more structure. All of the teen volunteers, just like any adult volunteers, are placed on a team, either a nursing home team, a hospice house team, or a home care team, depending on where they are volunteering. The team volunteer coordinator is always the first person that the teen volunteer can turn to with questions or concerns. Initially, we place teen volunteers in a structured setting. either in our own hospice residences, or a nursing home — so the teen volunteer is not alone with the patient. In the beginning, I don't encourage teen volunteers to visit children in a patient's private residence or home, or to be involved in a life review project.

Because we have a range of ways teenagers participate, not every teen receives the exact same level of support. In a nutshell, all teen volunteers have a volunteer team coordinator who coordinates the efforts of adult and teenage volunteers in his or her area and offers a monthly support meeting. Realistically, not all teens attend these intergenerational meetings. The volunteer team coordinator will make a monthly check-in phone call to each teen, as a minimum baseline level of support. Many teens receive much more support and in fact benefit from monthly in-service meetings organized by the teens themselves at their high schools as an after-school activity.

What was once called community service is now called service-learning. The idea behind this change in name is to reinforce the bilateral nature of this relationship. When a student comes to hospice for instance, not only is that student providing a service to our patients and families, we are providing an opportunity for that student to learn from our patients and families, and from his or her own experience.

There are several individual high schools in Pinellas County where we have a large numbers of teen volunteers because we have developed alliances with the service-learning programs in these schools. These are usually schools with special programs. For example, there are two International Baccalaureate (IB) programs, which are for very bright, advanced students, who are taking college-level courses and graduate with college credit from that program. There are also two schools with a Medical Magnet Program for students who are interested in pursuing health care careers, so they have a health curriculum. The Medical Magnet Program is geared for all kinds of health related careers, everything from veterinarians, dentists, and nurses, to home health aides, and physicians, with opportunities to explore various health care career tracks. Students enrolled in those programs are required to perform two to three hundred hours of service-learning in order to meet program requirements beyond the academic requirements. There is a range because the IB program requires more hours than the medical program. In addition, all of the schools offer something called the Florida Academic Scholarship, which is an effort to encourage students to attend state universities in Florida. In order to be eligible for that scholarship, students need to do a 75-hour service-learning project.

So, these magnet programs with substantial service-learning requirements were natural partners for hospice. We've partnered with those schools in the past on some grants, to be able to provide opportunities for service. That is really when our program took off. That first grant that we partnered on was in 1996 and it was called Florida Learn and Serve. There's also an America Learn and Serve grant, which I think would be interesting to readers because there are opportunities for hospices to apply for learn and serve grants to start youth programs anywhere in the United States.¹

In these high schools where we have large numbers of teen volunteers, we are able to offer more substantive support. For example, in Palm Harbor University High School nearly one hundred students serve as teen hospice volunteers for The Hospice of the Florida Suncoast. That's our largest school program because this school has two magnet programs — an IB and the Medical Magnet Program. We have monthly on-site, after school meetings at Palm Harbor and in the other two schools in South County, which house the other two magnet programs.

These student volunteers call themselves the Hospice Teen Council. This group is a sanctioned high school group and the students run the meetings. They elect officers and a board, so they have a president and a vice president. The students plan the agenda for the meeting, with my involvement and with the involvement of a teacher who serves as the sponsor for this hospice group. Each high school with these large numbers of teen volunteers has a teacher who serves as a liaison to our hospice.

The purpose of these Teen Hospice Council monthly meetings is to provide a continuing education program geared to adolescents. I asked the students at the beginning of the year what else they wanted to know about and they helped choose the topics for training. We have had someone come in and do a workshop on therapeutic touch, with the goal of increasing the teens' awareness of complimentary therapies. We have had someone come in and talk about HIV and AIDS. Someone from our children's program came and talked about the children's program and bereavement services and how the students can help as teen volunteers.

The high schools have a sense of ownership about this program, which is very important. Each of these schools with a substantial service-learning program is willing to make contributions in kind. For example, they give us a meeting space for training and meetings. They help to find a teacher who would serve as a volunteer, and we register that teacher in our volunteer program because he or she is staying after school to do this without additional pay. So, the schools come to the table with resources and this contribution is essential to the success of the program.

If you have a lone student out in another high school, do you invite him or her to these meetings so he or she can get the benefit of this continuing education geared to teens?

Students from other schools are invited to come to Hospice Teen Council meetings at the schools with big programs, but many times what happens is that students from schools without special programs go to their own volunteer team coordinator's support meetings. Over the last couple of years, we've added two more high schools to our teen council program. This growth has been initiated by individual students who have said, "You know, I'd really like to have a formal group here, and I think I could help to recruit more kids if we had meetings."

Describe a Hospice Teen Council meeting. What does it sound like?

I invite the volunteer team coordinators who work with these teen volunteers to come to these meetings. For instance, we would invite the nursing home volunteer coordinator who supervises all the students who are placed in nursing homes. We would invite the home team volunteer coordinator because she's working with the students who are visiting children and families who live in their own homes, as well as the students who are working in the office. In addition, we would have the residence volunteer coordinator because she's supervising the students who are involved in the hospice residence program. The programs are brief — thirty minutes at the most. because the students have been in school all day. We've got a hundred students who are involved in service. When we have good turnout, we average 40 to 50 students, which I think is very good because the Teen Hospice Council occurs right after school so we're competing with after-school sports, clubs, and other activities. We meet in a large room for the presentation, there is an opportunity for questions or discussion, but then we'll break into groups, usually by team. It's a nice opportunity for the volunteer coordinators to connect with the teen volunteers and allows for some direct feedback about their placements at the school meetings. And from time to time, if we've got a big special event coming up, I would invite the special events coordinator to tell kids about it, and get them to sign up to help.

Each of the fifteen paid volunteer coordinators hosts a meeting to provide support to adult and teen volunteers, on a monthly basis. These are the meetings that every teen volunteer is invited to, whether or not that teen has access to the Hospice Teen Council after-school. Often the coordinator invites a member of the interdisciplinary team (IDT) such as a social worker or nurse, to come to the meeting and to do a workshop or to offer support to adult and teen volunteers. We make sure that we have evening meetings so that working people and teens can attend. Teens are invited and some individual students have attended from time to time, but they are not participating as much in these meetings as they do in the high school groups. One of the challenges we face is to support those individual teens who are from high schools with a smaller numbers of teen hospice volunteers, which do not have Hospice Teen Council meetings.

The relationship with the volunteer coordinator becomes the linchpin of support and supervision for those individual students who do not elect to come to the volunteer support meeting once a month. The volunteer team coordinator is keeping track of that teen. She is the person with her hand on the pulse of that particular student. She serves as a bridge between the teen volunteer and the IDT of which she is a member. The volunteer team coordinator is the person that the student is sending his or her documentation to, so she knows if the teen is seeing his or her patients or not and if the documentation is occurring. In the case of the nursing home volunteer coordinator, she communicates with the activities director to find out how things are going. As I mentioned earlier, we encourage telephone contact on a regular basis between the volunteer coordinator and all of his or her volunteers, including the teens. We ask each volunteer team coordinator to pick up the phone once a month and call each volunteer to ask, "How are things going? Do you have any concerns? Is there anything that you need?" That phone contact is crucial and can include an informal invitation, "Stop by the office if there's a day off from school, or after school." So, we try to give that support on an individual basis.

Another source of support for our teen volunteers comes from an entirely separate program at The Hospice of the Florida Suncoast, the Child and Family Support Program (CFSP). CFSP offers grief and bereavement services. They employ counselors whose job it is to work with children, hospice families, and non-hospice members of our community who have experienced the death of a loved one. In addition, every school in the county is matched with one of these hospice counselors in the event of a crisis to help school children who have some affiliation with a person who has suddenly died. whether the cause is homicide, suicide, accidental death or illness. So part of that counselor's job is to be available to students in the Pinellas County schools.

I want to be clear, these counselors are paid by hospice and they don't work at the school. They've simply been matched with the school so that school members know that if something happens at their school, they can pick up the phone and call hospice. In that event, the school will have access to a hospice counselor, John Todd, for example, and he will come and meet with the child or children in question. It's a wonderful service to our schools. The counselors have divided up the county geographically and each is responsible for a portion of schools, which might be a combination of elementary, middle and high schools. This system is wonderful because these bereavement counselors can meet and offer support within a particular school in which there may be a number of students sharing a common loss experience.

We invite these counselors to come to the Hospice Teen Council meetings and to be available to teen volunteers at their schools. These counselors extend their services to support the teen volunteers in the school. If I know that Michael is really close to Mr. Smith, and he's been visiting him and Mr. Smith has just died, I get that call from the team. Then, not only do I call and talk to Michael and his parents, but I call the counselor who's assigned to Michael's high school and say, "Could you make a contact?" I give him the information about the patient and teen volunteer, and how long they've been together. Then that social worker/counselor is available to that student — to talk over the phone, to meet at the school, to meet more than once if that's needed. That has been a wonderful connection.

Not all teens know when they need support or seek it out when they need it. How do you provide what you think they need?

Exactly. The counselors are very good at offering subtle support. They don't approach these individual meetings as, "Come and pour your heart out to me." It's more in the vein of, "Have you got a couple of minutes after school? I'd like to just chat with you for a few minutes." They make it as non-threatening as possible. I also make sure that parents know that this service is available because a grief reaction may be delayed. The student may be fine now, and in a month the parents may have some real concerns about what's going on. I want them to know that this service is there for their child.

I don't want to discourage other hospices that are small and wanting to start a program. One of the things I want to be very clear about is, we're fortunate. We're a big hospice, and we have resources for me to be full-time, and we have all these other people. But if your hospice has a desire to involve youth in service, do that. Start small. Recruit a limited number of kids. Train them. Then either someone who is already coordinating the adult program, or perhaps an adult who really likes kids could volunteer to coordinate this program and get it started. Or the hospice staff can write a grant, as they did at St. Thomas Hospice, to fund a teen coordinator.² The coordinator role is crucial and probably works best when it is a designated, paid person. You can start small. Place the teen volunteers in one setting where it is manageable for you. Be aware that hospice staff need to be prepared to explain the program to parents, to reassure them about what their children will be doing as well as to describe the kinds of training and support the hospice will offer teen volunteers. I have created a short checklist of key points to consider when starting a teen hospice program that summarizes some of the main points I am elaborating on in this interview: Issues to Consider.

What are the barriers or challenges to working with teens in hospice?

There is a lot of bias against teenagers, even good teenagers. A big part of my job is to be an advocate for these young people. And I don't mean to say this in any way of being critical of adults, but the teens. world is different.

For example, just yesterday I stopped in one of our service centers and a staff member expressed a concern about the clothing of a teen volunteer who was working there. The teen had on a spaghetti strap top and a skirt. Well, that's the fashion right now — that's what the kids are wearing. The hospice staff member asked me what we tell the teens during training about their dress. And I said, "I ask them to represent hospice well. And absolutely, if students dress in a way that is offensive, or vulgar, I would want you to address that, and I would follow-up and address it. But we also have to be respectful that their style may be different from ours." As we talked more, it was clear that in this instance, it was just a matter of how young people dress. We need to work with our staff to ensure that teens are understood.

One of the mistakes that I wanted to share with you relates to this prejudice against teens. We became so enthused about this grant opportunity, and so enthused that the school wanted to partner with us and students wanted to do this, that we didn't make sure that we had buy-in from our own staff and adult volunteers. We neglected to canvas them and find out if they thought this was a good idea. We assumed that they would be welcoming of these students once they came.

There is a whole piece of internal marketing of the program, which involves some staff training and volunteer training at the outset about how teens are unique, and how you can work with them best to help bring out the best in them, and what our responsibility is to them. Often working with the hospice is these students. first job experience. We are training them to be responsible and contributing members of their community.

So that's something that I would definitely say to any hospices getting ready to do this. It's not enough that just a few people who are in charge of writing the grant and coordinating the program are excited about it. You need to bring the rest of your staff on board as well.

What helped persuade other staff that recruiting teens made sense?

One of the ways that has worked best for us. is we have shared success stories of what teens can contribute to hospice patients and families, and what they can add to our program. We have shared those in a variety of ways. We have written articles in our newsletter. One of the most effective ways is to dedicate a whole staff meeting to the teens. We invited some teen volunteers to come and stand in front of the staff and to talk about their experiences with hospice patients. The teens spoke about how serving as a hospice volunteer had changed their way of thinking and their plans, and what it had meant to them. And when staff saw these kids and heard these stories, I saw their attitudes begin to change. It is almost as if you need to do a pilot program first, and have it work, before people really believe that it can work.

The calls that I get from volunteer coordinators from other hospices in the country, they all say the same thing: "Can kids really do this? I know kids can work in the office and help as fundraisers, but can they really visit patients? Does that work? Are they mature enough? Will they follow through? Do they document?" And these questions are all valid because people are concerned, and it's a new idea. I tell people the teen program resembles the adult volunteer program: Every teen who trains with us does not end up being the top volunteer. There are some students who come and they learn about hospice, they volunteer for a little while, put in their service hours, maybe, and then they're done. There are some kids who come and decide it is not for them at all, and do not begin to serve. And there are other kids who come, and it really has an impact; it becomes important in their life. I had one boy who was a drum major for his high school band. I called him one Friday afternoon, and he said, "I've got to run. I'm on my way to visit Carl [a pediatric patient he was visiting]. And I've got to do that quickly because I've got a football game tonight." He wanted to be sure that he made that connection with that child before he went to do a high school activity on a Friday night. I hear stories like that all the time. This experience becomes important in a busy teenager's life.

And in your 18-hour training where you have the direct contact, do you make explicit what the expectations and criteria for good performance are?

This is an area where we are still working. We need to be more clear about our expectations in our program. We wish we had done more with outcome measures and performance standards up front. At the moment, it is much more of an informal process. We ask the teens to remember that they are representing The Hospice of the Florida Suncoast when they enter a site to be with a patient. We ask people on-site to let us know how a volunteer is doing and the volunteer coordinators talk with each teen volunteer regularly. We ask for feedback, when it is appropriate, from patients or families. For example, "How is this going? Has the volunteer been helpful in the visits? Is there something that we could be doing differently or better?" However, the performance evaluation part of our program is quite informal.

We do conduct two different surveys of patients and families, which include an open-ended section for comments. We survey all our families approximately six weeks after the death of a patient about all aspects of hospice care. In addition, we send out a patient concurrent survey to about 50 percent of our patients shortly after they enroll in hospice. We have read positive comments about the contributions of teen hospice volunteers on these surveys.

Do you ever have a situation where you have a very enthusiastic teen, but you have concerns about this teen's ability to work with patients? What would you do in this instance?

Well, we do a couple of different things. If we're really concerned about the student, we ask them to start out in our office or in our thrift store, with the idea that in six months, we'd like to talk about an opportunity to visit with a patient. If we have just a little bit of a doubt but we think, . you know, this really might work, the student seems a little immature, but we ought to give them the benefit of the doubt, that's exactly what we do. We place them in a structured situation, usually a nursing home, and we make sure that the volunteer coordinator that supervises them, whose team they are on, knows about this little concern that we have and keeps a close watch on that student. And we have had that.

What do you mean by "a close watch?"

The volunteer coordinator talks with the activities director who is on-site, or the coordinator in a hospice residence. She asks how the volunteer is doing. For example, "Is the volunteer arriving on time? Is his or her behavior appropriate? Describe his or her communications and interactions with patients and staff." We keep track of each student's performance by asking those questions. The volunteer coordinator also speaks with the teen volunteer over the phone on a regular basis, and encourages the teen to attend regular support meetings. So we do have to rely on the staff who are in our residences, or the activities director or volunteer coordinator in the nursing home setting.

Your numbers have increased from 25 to 250 since 1994. Are there problems associated with having such large numbers of teen volunteers?

Yes. The program really began to grow in '96, when we first partnered with the school district on the Learn and Serve Grant. But we've had a large number, 200 or more, for the last couple of years.

The larger the program grows, the more we have to rely on individual volunteer coordinators to be in touch with the teens. I can't know what all 250 students are doing; whereas, in the beginning, one person could know all the teen volunteers and keep up with each one.

Our greatest challenge has been to get requests from teams for teens to be placed. So as the program's grown, our supply of teen volunteers sometimes is greater than our demand for their service! This is why we've attempted to be innovative and to brainstorm all the ways we can enhance what we're offering to patients and families. What are some things that kids can do that we haven't been thinking about? Part of this challenge may be concerns that still exist for our own staff about teen volunteers. And part of it may be concerns from patients and families. This is a chaotic time in their life and families may have reservations about the idea of a teenager coming into their lives at that point. Part of the challenge is that staff members are just really busy, and so they have not asked themselves, "What need could a teen fill here?"

A major part of my job is to bring the teen program, the teen volunteers, and the services they can offer to the attention of our teams through our volunteer coordinators. The volunteer coordinators listen at every interdisciplinary team meeting for ways teens could contribute to the care they are offering. In this way we generate requests for teen volunteers. We assign a teen volunteer, based on his or her interest, to a particular team; however, the patient assignment comes from the team once the coordinator finds a good match.

We haven't talked about outcome measures, and I understand that you don't really have any yet. But what would you like to measure? What aspect of the Teen Volunteer Program would you most like to document?

We've begun to think about documenting the impact of our efforts both on patients and families as well as on the teen volunteers. I think if we could measure the effectiveness of the life review project, the Lifetime Legacies Project, that would be powerful data. What difference did it make after that patient had an opportunity to review his or her life, and after a teen documented his or her story in a video, or in a journal? Did that process help that patient come to any kind of closure? Did it help the patient resolve any conflicts? What was the impact of this experience? We would love to measure that somehow.

We are equally interested in documenting the impact of contact with patients who are dying on the teens who volunteer. Do their attitudes about aging and about death and dying change as a result of the volunteer experience? Can we document skills acquired and career paths taken? Certainly, individual students have told us about how hospice has influenced their attitudes and career choices. What is the overall impact of this program on the teens?³

I do have one story that speaks to the question of the impact of the Life Review Process on our patients. We had a couple who had been married for over 50 years and the wife was a patient. They had traveled all over the world and had recently bought a sailboat and now she was too ill to sail. Two of our teen volunteers met with them to do a video Life Review. The couple engaged equally in the telling of their experiences as a couple, and when the video was done, it was beautiful. This patient responded to one of the patient concurrent surveys we send out, and I happen to have her comment: "Can't say enough good things about this place. Thought the video team was great — wished they could have had the teens on camera."

We received a letter from a parent whose child had been mentored by one of our teen volunteers, Michael Tibbetts, in fact, the brother of Emily who wrote one of the Personal Reflections. This was a situation where the father was a hospice patient and these two teens worked first with the son but in fact helped the whole family during this difficult time. Her letter is a real testimonial to what teens can contribute.

I would say that 75 percent of these students continue to volunteer, through high school. If they train as freshmen, they're with us for four years. If they train as sophomores or juniors, they're with us until they graduate.

To what do you attribute these teen volunteers' commitment?

These teens feel that they're doing something meaningful. They feel their work is important and yet volunteering is not a difficult thing to do. We do not have a specific time requirement. We offer a variety of choices, and they can change their tasks so they don't get bored. They can do one kind of volunteer work for a while and then say, "Oh, gosh. I've heard about Life Review. I think I'd like to learn about the video project." They can make changes within our program, and grow and learn. Teen volunteers tell me how they have learned things about themselves, that they have learned they are good at things that they did not know they were good at. It's also become — and this is going to sound sort of weird in a hospice setting — but in some of the schools, it's become, 'popular'. Being a teen hospice volunteer has become accepted. It's something that their friends are doing.

We have a lot of sibling volunteers. I'm having so much fun watching younger brothers and sisters come in when the older ones are getting ready to graduate. Some of the boys who volunteer come to us via a sister, but other times it's because their friends, who are girls or their girlfriends — somebody that they're dating, for the older students. are in hospice. And they're telling them that it's fun, and that we do really cool and fun things, "Come to a meeting and find out what it's about." It has really been a process of peer recruitment. Students are getting other students involved — that has made the program successful.

Any Final Comments?

I have to say that one unanticipated benefit of the teen program is that it has improved our adult volunteer program. Whatever we've learned from the teens often applies to our adult volunteers as well. For example, teen volunteers told us to make the training more interactive and fun. We found that adults appreciated the same learner-centered approach. The teens keep us on our toes — they bring in fresh ideas and energy that we all benefit from.

References

1. See Resources and Tools page for more information.[Return to Featured Innovation]

2. See Other Promising Practices for a summary of the St. Thomas Hospice Junior Volunteer Program.[Return to Featured Innovation]