Interview with Robin Fiorelli

Q: Through your work in hospice, what changes have you seen over the last years in the field of grief and bereavement?

A: Overall we now pay more attention to the variety of grievers in our society. For instance, how might the grief of a young widow differ from the grief of an elderly widow? What are the special issues faced by an adult child who has been orphaned by the death of both parents? How do we meet the grief needs of a developmentally disabled person?

One of the biggest changes has been an increase of knowledge and information about cultural differences in grief. Hospices have been working hard to reach out to underserved communities, understanding the need to learn more about how cultural differences affect grief and mourning rituals.

And these cultures teach us. In reaching out to African American communities, our hospice partnered with the Rainbow/PUSH Coalition. We went to churches and said, “Tell us about you and what you need from us.”

A plethora of literature now exists about cultural competence. In practice, however, we always need to find a balance. For example, we need to learn about Asian rituals, but must not use that information to stereotype about how every Asian person will react to grief.

We also have learned a great deal about helping children and teenagers grieve, with a greater understanding of how their grief reactions are based on developmental stages. We no longer keep kids away from grief. And we’ve found that one of the most effective ways to help them deal with grief is to go where they are, and work through the people with whom they can relate--working with schools, boys and girls clubs, even sports teams. And we can never underestimate the power that peers can have in helping other kids.

Another area where we’ve deepened our understanding is looking at individual styles of grieving. Someone may not shed tears at the funeral, but will have other healthy ways of grieving, such as journaling or visiting the graveside privately. These differences often break down by gender, but not always. If a couple has different grieving styles, this often can bring stress. The stress is not about the loss itself, but more about who is seen as grieving the “right” way.

Q: What are some of the common questions or misconceptions that you hear from people who are grieving?

A: In my experience, I am often asked, “Am I doing this right? I don’t know if what I’m feeling is right, or appropriate.” What we have to continue to do is provide assurance that there is no right way or wrong way to grieve. And no set time in which to grieve.

This reassurance can occur in a group setting as well. Being in a group can help to validate feelings that might not be “acceptable” -- a grieving person can learn by hearing others’ experiences that it’s okay to feel jealous, or angry, or relieved, as part of her or his own process.

Many have the notion that they need to “get over” their grief, say goodbye to their loved one and cut off their relationship from them and move on. Our culture envisions healing from grief the same way we think about healing from the flu. But what we have learned from those who are grieving is that relationships continue after a person’s death. Grieving people find great relief in knowing that it’s okay to look at photos, to set a seat at the table for Grandpa, and even to experience grief and sadness years after the death.

Q: What implications do some of these issues have on actual practice, either in individual counseling or in group settings?

One way we’ve incorporated knowledge into practice is in the development of more than 40 programs of “specialty memorials.” Examples include a Grandparents Memorial or one on Mother’s Day. For many, a memorial event that is focused around a specific theme adds meaning and power.

Since the attendees at an event like a Grandparents Memorial may include anyone from age three to an adult, these events allow us the opportunity to provide developmental and age-appropriate activities. For the younger kids, we may use artwork as a form of expression. For the adults, we may ask them to share a favorite recipe that was passed down from their grandmother and to talk about that connection. For teens, we often start by asking them to help with the young kids. It’s hard to get teens to talk about themselves, but we’ve found that engaging in the work that the younger kids are doing often leads to a greater willingness for the teens to make their own drawings or share their own responses. These memorials allow us to encourage and honor individual responses to grief and loss.

Q: How important is it to provide grief support for families before the death of a loved one, and what role can hospice play in offering that support?

A: One of the reasons why hospice is so important and effective is the knowledge it has in helping families deal with this anticipatory period. So much of the stress prior to a loved one’s death comes from the feeling that, “I don’t know what to expect.” Families may be very fearful about the physical process of dying. Hospice is able to allay many of the caregivers’ fears about what their loved one might experience at the end of life through simple education and support.

Another stress is emotional. A common statement from families is, “I’m not sure I will be able to make it through death and grief and loss.” Hospice professionals can say, “I am here for you.” We try to refrain from giving advice, but through experience can help to calm some of that anxiety and instill hope. In doing so, we can help empower them to prepare for life without their loved one.

Sometimes it’s helpful to ask a question such as, “How do you imagine it will be?” or “What do you think might be the hardest part for you?” The pain and the suffering associated with the loss cannot be taken away, but there is something so important about having faith in a professional whom you believe knows what she or he is doing and can walk you through it.

Many who have lived through grief have experienced a shift in priorities and values, and developed new and meaningful relationships. They may find new strengths and coping skills that they didn’t know they had. We hear people who say, “Now I know I can handle anything.” This is one of the gems of providing bereavement care, and it’s a gift to us.

Q: What are some of the emerging issues or concerns around grief and loss that you are finding in your community?

A: I think there has been more emphasis lately on the grief related to coping with natural disasters and public tragedies--the two most powerful examples being the Katrina disaster and 9/11. As you know we have just passed the fifth anniversary of September 11th. As a result, I have noticed the subject of 9/11 coming up more in both my personal and professional life--it’s as if our nation needs to reminisce jointly, to try again to make sense of, to mourn communally again those tragic moments. Lately there has been a lot of discussion generated about what is hospice’s role in public tragedies. Instead of being first responders related to grief, are we better at providing support for the longer-term grief effects of these tragedies? Are professionals trained in Critical Incident Stress Debriefing the best first responders? Should folks depend more on their natural support systems? These types of questions require ongoing examination and discussion.

Q: Professional caregivers who work in end-of-life care settings face unique challenges; staff turnover and burnout can be significant issues. What ways can organizations effectively support grieving staff and volunteers?

A: Because of the rewards of this work, we actually experience very little turnover among our bereavement managers and other bereavement personnel. It is critical to provide support to staff. I always try to remember that we are providing a service, but that caring for dying people and their families has a different emotional component than working in retail or manufacturing.

Support activities should be available for staff, but I believe strongly that these activities must be voluntary. Just as we discussed earlier regarding our patients’ loved ones, each hospice staff person also handles grief individually. We do not make rituals part of our team meetings, but do make activities available. We developed a Care for the VITAS Caregiver toolkit, which includes meditation, complementary therapies and guided imagery. And staff are always welcome to attend memorial services. Most importantly we need to let staff know that options are available, and that they can come to us to learn more when they are feeling burned-out.

Q: How important is the role of ongoing education for professional caregivers?

A: I do think it is important that hospice professionals stay knowledgeable about the latest advances in technology (for instance pain and symptom management) as well the current trends in management, in managing the terminally ill patient and family, and in grief theory and grief interventions.

With more than 40 hospice programs, our program-level bereavement staff are always reading, always learning, always experiencing—and we provide opportunities throughout the year to share and develop professionally together.

Q: As a long-time Site Coordinator for HFA’s annual “Living With Grief” Teleconference, what have been some of the benefits for your staff and your organization in participating in the program?

A: Where do I begin? First of all, we are committed to the annual teleconference because we believe that HFA consistently provides a quality, professional grief and loss educational opportunity for professionals. We feel honored to be site coordinators--to make the teleconference freely available to folks in the communities that we serve. It is a nice opportunity for us to provide education to our staff and volunteers and to allow attendees an opportunity to receive CEUs.

Second, I do believe the teleconference has given VITAS positive exposure in the communities we serve. We advertise the teleconference using flyers, posters and press releases, and we distribute these materials to a wide audience. This publicity has been especially helpful to our new programs--we’ve opened more than 20 over the past five years. Each year we get savvier in our process--compiling better mailing lists, and accessing a broader range of volunteers and community groups.

And the panel discussion at the end of the teleconference allows us a chance to promote our own staff who has an area of expertise, or to promote another professional in our community whom we respect.

My hope is that through hospice providers and through other community educational opportunities like the HFA annual bereavement teleconference, we are beginning to influence our culture’s attitudes about grief, particularly in seeing grief as a natural reaction to losing a loved one--instead of seeing grief as something maybe pathological, something that we need to heal from, get over and move on from as soon as possible. We learn from those who grieve, and it is a great gift that we receive in this work.

Read more about the bereavement services offered by VITAS Healthcare Corporation.