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The Pediatric Palliative Care Service at MassGeneral Hospital for Children offers treatment intended to optimize quality of life, promote healing and comfort for children with life-threatening illness, and provide support for families whose child faces a serious, chronic or potentially terminal disease. By honoring the ways in which a child finds comfort, joy, autonomy, independent communication and safety, we use our medical knowledge to put our skills and technology to the service of the child and the family. One of our primary goals is to relieve patients’ symptoms and keep them as comfortable and pain-free as possible, whether or not a curative treatment is being pursued.
The support we provide includes:
The Pediatric Palliative Care team conducts weekly rounds during which cases and issues relevant to the care of children with chronic and terminal illnesses are discussed, such as pain management, caregiver grief and discharge planning for palliative care patients. These rounds are attended by the palliative care Interdisciplinary Team (IDT) made up of staff from nursing, child life, social work, chaplaincy, palliative and psychiatric medicine, and family advocacy. All providers involved in the care of children facing terminal illness are invited to attend IDT rounds, whether or not the child is formally followed by Pediatric Palliative Care.
The Pediatric Palliative Care team works closely with each child’s primary team including, among others, his/her:
At 5 weeks old, Natalia Boidi was rushed to the emergency room where doctors diagnosed her with SMA, a rare genetic disorder in which the nerves in the spinal cord slowly die off. After months in the PICU and a novel treatment called Spinraza, Natalia can breathe on her own and is learning to stand - things that were once almost impossible with her disease.
When coming to MGHfC for treatments, Mike Doiron transported his daughter, Ava, 8, in an adult-sized wheelchair that was too big for her small frame, making the trips uncomfortable. When Ava passed on last summer, Doiron brought his idea for child-sized wheelchairs to two MGHfC Family Advisory Councils. In July 2017, MGHfC debuted its new fleet of wheelchairs throughout the Yawkey building.
This past spring, MGHfC introduced the Purple Butterfly Project to honor the lives of babies who were part of a multiple pregnancy and passed away. The stickers also serve as a reminder to hospital staff of the family’s loss.
For NICU staff, August 2016 marked 10 years of providing care for MGHfC’s most fragile patients and their families in a new space. The new NICU first opened in August 2006 and became a sacred space where staff and families shared life’s most difficult and beautiful moments and formed long-term bonds with one another.
Jeanne MacDonald, MD, cares for MGHfC's most fragile babies in the Neonatal Intensive Care Unit, some of whom receive palliative care for serious, chronic and sometimes life-threatening illnesses. This year will mark her third consecutive Boston Marathon running for Pediatric Palliative Care.
Story in Wicked Local about Dr. Pat O'Malley's work in pediatric palliative care.
After 31 years, Patricia J. O'Malley, MD, retired as MGHfC's longest-serving attending physician in Pediatric Emergency Medicine to dedicate her time to the Pediatric Palliative Care Service.
For pediatric nephrologist and marathon runner, Avi Traum, MD, running for the Pediatric Palliative Care marathon team means being able to give patients with cancer, like Zoe Meinen, a better quality of life.
On Patriot's Day, MassGeneral Hospital for Children (MGHfC) physicians Jeanne MacDonald Avram Traum will run the Boston Marathon in support of MGHfC’s Pediatric Palliative Care Service as part of the Miles for Mass General program.
At MassGeneral Hospital for Children, interns and second-year residents have an opportunity to practice the art and science of good communication in the longitudinal curriculum’s Communications Workshop.
Ben Siedman loved decorating the Christmas tree with his family every year. One year since his death in 2014, Ben's mother shares the importance of the little words that made a big difference when Ben and his family spent time together during the holidays.
For marathoners Jeanne MacDonald, MD, of the MGH Neonatal Intensive Care Unit, Catherine Chapin, MD, a pediatric resident, and Kevin Timulty, a Braintree police officer, giving back is part of their everyday jobs.
Karen Livernois writes about the care her daughter Yvie received at MassGeneral Hospital for Children and Dr. Avi Traum's request to run the Boston Marathon in memory of Yvie.
Mass General Bereavement Support GroupOpen to patients and employees of the Mass General and Partners Healthcare community. This 8-week group is for people who have experienced the death of a loved one within the past 1½ years. The fee is covered by most insurances and Medicare. For any questions, to refer or to schedule a pre-group screening interview, please contact the group leader, Marie Herbert, MSW, LICSW, at (617) 726-8199.
The Compassionate Friends Organization dedicated to assisting families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive. There are chapters located across the United States and internationally. (877) 969-0010
Association of Death Education & Counseling Their website provides various online resources for coping with loss. The organization can make referrals to support groups throughout the United States. (847) 509-0403
Hospice Foundation of America The Hospice Foundation offers support and education about death, illness, and the process of bereavement to those who are grieving personally or professionally. They offer referrals to grief support groups throughout the United States and also sponsor an annual 'Living with Grief' teleconference series, a monthly bereavement newsletter, as well as other publications. (800) 854-3402
Club STAR: Sharing Together and Remembering A group for ages 5-18 and their parents grieving the death of a parent or sibling. The group meets from 5:30 – 7:30 p.m. on the first Wednesday of the months of October-June at Mass General Hospital. Club STAR is organized by the MassGeneral Hospital for Children, Child Life services, and the Social Service Department. To register, please contact Hillary D’Amato, MS, CCLS, at (617) 643-9276 or email@example.com
Grief Group for Children & Teens An expressive support group on grief and loss for children and teens 7-18 years old who have experienced the death of someone close to them. Two groups, separate rooms, divided by age group. Facilitated by Cara McAuliffe, MS, CCLS Child Life Specialist, MassGeneral for Children at NSMC and Cammy Adler, LCSW, CCLS / Kristen Goodhue, MS, CCLS Child Life Specialist, Care Dimensions. Cost: FREE; Wednesday's 5-6:30 p.m.beginning September 21, 2016, Location: MassGeneral for Children at NSMC, 57 Highland Avenue, 1st FL., Salem, MA.
Jeff’s Place Offers free, bi-monthly, open-ended peer support groups for children ages 3-19 and their caregivers who are coping with the death of a loved one. All groups are facilitated by professionally trained volunteers under the supervision of a clinician. Individual and small groups are held in Framingham, Mass. Large groups are held in Wayland, Mass. (508) 276-3225
Comfort Zone Camps Camps are offered free of charge to children ages 7-17 who have experienced the death of a parent, sibling or primary caregiver. Comfort Zone Camps create an environment where grieving children can have fun and break the isolation death often brings, while learning valuable coping skills for their daily lives. Typically, campers attend at least 3-6 months after the loss or any length of time beyond. Camps generally are held on weekends from Friday-Sunday afternoon.
The Dougy Center for Grieving Children & FamiliesThe Dougy Center is headquartered in Portland, Ore., but its website offers tools for children, teens and young adults who are grieving a death. Search the site for grief centers staffed by trainees throughout the country. (866) 775-5683
The Garden: A Center for Grieving Children and Teens The Garden at Cooley Dickinson VNA & Hospice in Northampton, MA, provides support to grieving young people and their families. The programs and discussion groups are geared toward helping young people identify and share their feelings and begin the healing process. Parents and guardians meet separately for a chance to discuss their own concerns as the family unit navigates the grief journey. There is no charge to the families, and the funding is provided through development activities led by the program coordinator and advisory board. The Garden has served over 400 families since it was founded in 1998 by Barbara Weiner-Dubeck. Contact firstname.lastname@example.org for information about programs.
This is not a full list of resources available to you and your family. If you have questions about the resources listed or would like more information about bereavement support, please contact the Mass General Hospital Social Service Department at (617) 726-2643.
We are grateful partners with No Empty Bedsides, a volunteer fundraising organization providing financial support to parents and families of hospitalized children cared for by MGHfC Pediatric Palliative Care. No Empty Bedsides provides assistance with the costs of public transportation, help with parking fees, and backup care for the hospitalized child’s siblings. It helps to ensure that every child has a loved own by their side during a hospital stay.
We are proud partners with Courageous Parents Network, a website designed to support and empower families whose child faces serious illness, and to enlighten caregivers about the lived experience of these families.
Pediatric End of Life CareOnline CMEThis interactive activity explores the role of pediatric palliative care. Specific tools are provided to empower the clinician to initiate end of life care discussions with patients and their families, aid the family in advance care planning, and support the family after the death of their child. Concepts will be illustrated through interviews depicting families’ struggles with end of life care. Videos were provided by the Courageous Parents Network. Learn more.
MGHfC Palliative Care Service
Yawkey Center for Outpatient Care
To schedule an appointment with a MassGeneral for Children pediatric specialist, please call 888-644-3248 or complete our online appointment form to request an appointment.
Physicians may call 888-644-3211 or use the online referral form and the Access & New Appointment Center will call your patient within 1 business day.
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