Quality-of-life Q&A: Supporting Patients and Their Families Through End of Life and Bereavement
Thanks to generous donations, Roswell Park’s End of Life and Bereavement program is able to provide compassionate support for patients who have received a terminal diagnosis, as well as their families. The initiative has been supported by donations since its founding in 2002, and since then, the program has reached out to 12,000 patients and their families. Beth Lenegan, PhD, Director of Pastoral Care, tells us about her first-hand experience with this program.
Q: What does the End of Life and Bereavement program provide to patients and their families?
A: When a patient receives a terminal prognosis of six months or less, our staff contacts the patient and explains what our program does, and that we would like to help during this difficult time. If they are interested in the service, a staff member keeps in touch with the patient and their family, and offers them support from Roswell Park and pastoral care. When the patient passes away, we give whatever support is needed —we may go to the wake or hold the funeral service, and we then stay in touch with the family for one year and offer our bereavement services to the family.
Q: What bereavement services are available for families when their loved one passes away?
A: We hold a monthly grief support meeting for families, as well as four different patient remembrance services that offer a way for family members to celebrate their loved ones’ lives — including services specifically for pediatric patients and employees. From care notes, to phone calls, to holiday cards, we stay connected with the families to offer support and help when we can. Donated funds have also helped us create our own grief resource book that is mailed out to all of the families that we are helping, and we send out a grief holiday book to that is sent to each family who has lost a loved one, because we know it is a difficult time of year for them.
Q: How does this program help patients and their families?
A: Each patient gets something different out of this program. Some are trying to figure out why this is happening to them, others may have questions about the afterlife — and they might just need someone to talk to about those thoughts. The patients are often worried about how their families’ grief, and the families worried about what they are going to do without their loved ones — and we can play a supportive role with those concerns. The bereavement aspect of the program reminds families that we have not forgotten them or their loved one. It allows us to say, ‘we are here to continue our support of you.’ The remembrance services and grief program are a comfort to them, and the support groups allow families to meet others who are going through loss as well. There is a common bond there.
Q: How are donations helping the program grow?
A: This year, we are offering more grief support programs in the suburbs, including Niagara Falls and the Albion area, to help more families. We are also planning our first overnight retreat in May for families to talk about grief and the impact grief has on their life.
Q: Why is this program so imporant?
A: Death touches us all, and we all have experienced other people reaching out to us when we have lost a loved one. If we think about our own experiences — when we have been supported during a difficult time — we can understand how important this program is for our patients and their families.