Pediatric Supportive & Palliative Care

Overview

Pediatric Supportive & Palliative Care at Mass General for Children (MGfC) supports children with chronic, life-threatening or life-limiting illnesses and their families by enhancing their quality of life. Our team offers support to children with serious conditions and their families anywhere along their illness course, including families facing pregnancies complicated by genetic disorders or congenital malformations. We work with your child’s primary and specialist teams to provide the best possible care. Our team aims to identify your family’s goals and values, ease distressing symptoms, optimize quality of life, and improve communication between care teams and families. We also help families navigate the best treatment choices for them and their child.

Our team is primarily an inpatient consultative service made up of pediatric palliative care doctors and a pediatric nurse practitioner. The Pediatric Supportive & Palliative Care team collaborates closely with your child’s care providers within MGfC as well as those in the community. Key providers we work closely with may include your child’s primary care physician, subspecialists, nurses, child life specialists, spiritual care providers, physical, occupational and speech therapists and many others.

While your child is in the hospital, their medical providers may invite our service to join your child’s care team. When your child is being seen in an outpatient setting, providers may also consult or refer children to our service. If you are interested in seeing if palliative care may benefit your child’s treatment, please call our office at 617-643-9079 and leave a message. We will return your call to determine if, and how, our team may be helpful.

Programs

MGfC Center for Courageous Kids

Our Pediatric Supportive & Palliative Care team, alongside the Coordinated Care Clinic, has received funding to create the Center for Courageous Kids. This center provides multidisciplinary, compassionate care for children with complex medical needs and life-limiting illnesses. The aim of the center is to improve the quality of life for these children and their families.

No Empty Bedsides

We are grateful for No Empty Bedsides, a volunteer fundraising organization providing financial support to parents and families of hospitalized children cared for by Supportive & Palliative Care. No Empty Bedsides assists with the cost of public transportation, parking fees, and backup care for the hospitalized child’s siblings. It helps to ensure that every child has a loved one by their side during a hospital stay.

Patient & Families Resources

Community Resources

Bereavement Resources

Community Resources

• Courageous Parents Network (CPN): Supportive & Palliative Care collaborates closely with the Courageous Parents Network. CPN is a destination created by parents, for parents, to support, guide and strengthen families as they care for a seriously ill child. Here you will find wisdom from fellow parents and pediatric care providers to help you be the best parent you can be to your child and children—and get through each moment. CPN has guides, videos, and podcasts available for families. Contact: Connect@courageousparentsnetwork.org  Website: https://courageousparentsnetwork.org/ 
• Department of Developmental Services (DDS): The Department of Developmental Services (DDS) offers services and supports for individuals with intellectual disabilities and children with developmental disabilities. DDS offers residential supports, services for families, respite care, and transportation services. DDS provides some of these services directly, and others are available from providers in the community. Applying early allows families to access supports as needed. Once a child turns 22 years old DDS will take over day to day services from the child’s school district. This often looks like day supports or a day program. Contact: (617) 727-5608 or DDSInfo@mass.gov  Website: https://www.mass.gov/orgs/department-of-developmental-services 
• Family Ties of Massachusetts: Parents of children with special needs often struggle with their emotions around the everyday challenges they face. This may happen at the time of your child’s diagnosis - and reoccur with a new diagnosis, as well as throughout the many transitions from infancy through adulthood. Contact: (800) 905-8437 Website: https://www.massfamilyties.org 
• Federation for Children with Special Needs: Provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. We are committed to listening to and learning from families and encouraging full participation in community life by all people, especially those with disabilities. Contact: (800) 331-0688 or info@fcsn.org  Website: https://fcsn.org/ 
• MA Department of Public Health Division for Children & Youth with Special Health Needs: The Division for Children & Youth with Special Health Needs at the Massachusetts Department of Public Health works with families, providers, and others to support children and youth with special health needs ages birth to 22 and their families. This includes children and youth with chronic medical, physical, developmental, behavioral or emotional conditions. Contact: Community Support Line at (800) 882-1435 Website: https://www.mass.gov/orgs/division-for-children-youth-with-special-health-needs 
• Parents Helping Parents: Does parenting leave you feeling stressed, alone, or overwhelmed? Any parent who is feeling overwhelmed, isolated, or stressed who would like free, confidential, and anonymous support may call. All Languages available. Contact: (800) 632-8188 Website: https://www.parentshelpingparents.org/copy-of-parental-stress-line 

Bereavement Resources

Bereavement Support for Adults

At Massachusetts General Hospital

• Mass General Bereavement Support Group Open to patients and employees of the Mass General and Mass General Brigham 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 leaders, Ellen McCarthy LICSW or Carol McSheffrey LICSW. Contact: Ellen McCarthy or Carol McSheffrey at (617) 724-8021.

In Your Community

• The Association of Death Education & Counseling’s website provides various online resources for coping with loss. The organization can make referrals to support groups throughout the United States. Contact: (847) 509-0403
• 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. Contact: (877) 969-0010
• 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. Contact: (800) 854-3402

Bereavement Support for Children and Teens

At Massachusetts General Hospital

• Club STAR: Sharing Together and Remembering
  A bereavement support group for children and teens
  What: This group is for children and teens in kindergarten through senior year of high school and their parent/caregiver who are grieving the death of a parent or sibling. The group provides opportunities to share experiences, create projects, and participate in memory making activities. There is a special group for parents/caregivers. This is a free program and new members are welcome at any time. This year we will be offering two groups- an in person group and a virtual group.
  When: The group meets monthly from October-June 5:30-7:30pm
  Where: In person at MGH Boston or virtual via Zoom
  Contact: Please contact Hillary D'Amato, CCLS at (617) 643-9276 or mghclubstar@partners.org for more information or to register.
  *Parking reimbursement is provided.
  This group is offered by the Mass General for Children Child Life Program

In Your Community

• Camp Angel Wings was developed for children and teens (6-15 yo) who share similar experiences with grief. The camp provides them with an educational, therapeutic experience that is also enjoyable. The camp helps counter a sense of isolation that children can feel after losing a loved one. Participating in activities such as swimming, focused arts and crafts activities, and small discussion groups can help children and teens explore their many thoughts and feelings about grief. It also encourages them to try new or familiar activities that help them feel good about themselves. Contact: (508) ¬973-¬3426 or campangelwings@southcoast.org 
• Camp Erin® Boston is a FREE, weekend bereavement camp for youth who are grieving the death of a significant person in their lives. Children and teens ages 6 to 17 attend a weekend camp experience that combines grief education and emotional support with fun, traditional camp activities. Led by bereavement professionals and caring volunteers, campers are provided a safe environment to explore their grief, learn essential coping skills, and make friends with peers who are also grieving. Eluna partners with bereavement programs in local communities to help fund, develop, and grow Camp Erin nationwide. For more information, please visit elunanetwork.org. Beth Israel Lahey Health at Home - Watertown, is home to the HEARTplay children's bereavement program and is the Boston area Camp Erin provider. Contact: (508) 309-5107
• Camp Kangaroo provides a camp experience and a supportive atmosphere for children (5-13 years) who have experienced the loss of loved one in the last two years. During their free weekend retreat, participants receive grief education and emotional support combined with fun camp activities that help them learn effective coping strategies. It gives an opportunity for children to find new meaning following the loss of their loved ones. Contact: Luisa Kcomt at (847) 692-1000 or LKcomt@Seasons.org 
• Care Dimensions: With its scope of services and staff, Care Dimensions’ grief support program is the most comprehensive in Massachusetts. Licensed bereavement counselors offer support groups and workshops for anyone who has experienced a death. Care Dimensions also offers individual counseling to people grieving the death of a loved one who was on Care Dimensions hospice service. Care Dimensions helps families understand what they’ve been going through, identify resources and provide options for learning more about grief and feelings, individually and in groups. They also teach people how to support and comfort others who are grieving. Services include: individual consultation and referrals, workshops and support groups, bereavement resources, community education programs and remembrance and tribute programs. Care Dimensions’ children’s program provides specialized support for children and teens, including Camp Stepping Stones, their summer family retreat. Contact: (855) 774-5100 or Grief@CareDimensions.org 
• Comfort Zone Camp: A Bereavement Camp for Children 7-17 who have lost a sibling, parent, or primary caregiver. Comfort Zone Camp programs are free of charge and include confidence building activities and age-based support groups that break the emotional isolation grief often brings. Comfort Zone’s programs are offered to children ages 7-17, and their families for the family programs, plus we offer young adult programs for 18-25 years of age. Held year-round across the country, our primary locations are California, Massachusetts, New Jersey, North Carolina and Virginia (HQ). We also partner with organizations to serve their local or specific communities through our Partnership and Community by Design Programs Contact: (804) 377-3430 or info@comfortzonecamp.org 
• HEARTplay℠ Program: Grief programs for children, teens, and young adults. HEARTplay is CareGroup Parmenter’s award-winning bereavement program for children, teens, and young adults who have experienced a death during their lifetime. Through conversation, music, movement, visual expression, writing, and storytelling, the participants share their feelings and experiences. This creative process invites new understanding about death and life and an opportunity for our participants to bond with others who are also experiencing a loss. HEARTplay groups are offered free of charge through the generosity of grants and donations. The groups are offered monthly or bi-monthly in Wayland, MA and Newton, MA. Registration is required. Contact: Jennifer Wiles at (508) 309-5107 
• The Carriage House, A Center for Grieving Children and Families: The Carriage House is a grief support center for children ages 3 to 18 years old and their families. It is the only program in Central Massachusetts providing children and teens a space to grieve the death of a loved one surrounded by peers also experiencing feelings of grief and loss. The first step in joining a Carriage House support group is a telephone intake, during which basic information about the family is collected. Each family is then scheduled for an orientation session at The Carriage House to better understand the program and how it runs. Interested families will then complete final paperwork and be assigned to age-appropriate peer groups as space is available. Contact: (508)753-5425 x6430
• The Center for Hope & Healing: Every person’s grief experience is unique. If you are grieving the loss of someone, we can help you toward a path of hope and renewal. The grief support professionals at our Center for Hope & Healing offer compassionate and individualized support for grief at any stage. We offer an expansive grief support group program and offer community programs like Camp BraveHeart for kids as well as remembrance events. Our grief support services are offered throughout Rhode Island and Massachusetts. Contact: 888-528-9077
• The Children’s Room creates safe, supportive communities so that no child, teen or family has to grieve alone. The Children’s Room offers hope and healing to children and teens ages 3½ to 18 who have experienced the death of a parent or sibling. We also provide opportunities for parents and caregivers to meet with each other and talk about their own experiences parenting a grieving child, and to give and receive support around their own grief. Our services include ongoing peer support groups, educational series for parents, teen programming, monthly arts-based family nights, and adult consultations. All of these services are provided free of charge. We also provide referrals and resources to families who are looking for additional grief-related services. Contact: (781) 641-4741or info@childrensroom.org 
• The Garden: The Garden provides support to grieving young people and their families following the death of someone close, including parents, siblings, other family members or friends. We run programs and host discussion groups geared toward helping young people identify and share their feelings, and to help them 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. The Garden runs two programs annually at its Northampton location, an 8-week session in the fall and a 10-week session in the spring. In addition, our services are increasingly accessible through area schools via guidance offices and other programmatic or incident-specific counseling efforts within each school or district. Contact: Shelly Bathe Lenn at (413) 582-5312 or slenn@cooleydickinson.org 
• The Good Grief Program: The Good Grief Program at Boston Medical Center has an illustrative history of providing exceptional care to children and families at a time when they may feel most vulnerable: after a child has experienced a significant loss. Although loss is an inevitable part of life; the experience of a significant loss such as death, divorce, or separation from a primary caregiver challenges us all, especially children. In the aftermath of loss, children need the support of caring adults to help them make sense of their loss, to support them in their grief, and to encourage their use of healthy and adaptive coping strategies. The Good Grief Program has acted as a steadying and supportive force for grieving families as they adapt and move forward in the wake of tragedy and crisis. The program accomplishes this work through a variety of efforts including offering developmentally informed, comprehensive consultation for caregivers supporting grieving children; providing grief-sensitive training and consultation for educators, schools, and other community agencies; and connecting individuals to grief resources and making appropriate referrals. The Good Grief Program seeks to equip families with the tools needed to process their grief experience and to promote lifelong resiliency. Spanish speaking counselors available. Contact: Maureen Patterson-Feder at Maureen.Patterson@bmc.org or Minelia Rodriguez at minelia.rodriguez@bmc.org or (617) 414-4005 
• Rick’s Place supports children, teens (5-18 yrs.) and their families after a loved one has died. Through facilitated peer support groups, Rick’s Place offers grieving children and their caregivers a safe place to remember their loved ones, honor their memories, and avoid the sense of isolation that such a loss can produce. At Rick’s Place, we know that grief is a natural expression of love for the person who has died. We do not try to make grief go away, but rather, children and families support one another on the path to healing during one of life’s most difficult experiences. Together, families learn to live on while living without. Contact: (423) 279-2010
• Wildflower Camp Foundation: The mission of the Wildflower Camp Foundation is to offer scholarship assistance for summer camp and enrichment programs to families in which a parent has died. It is our well-substantiated belief that this opportunity can provide a restorative experience both for the children and the surviving parent. Why camp, you ask? Because summers are the most challenging time for single parent families; while parents work, children need a safe, nurturing place to go. The experience of carefree summer days, the comfort of new friends and wonderful mentors, a break from the pain and stress at home is an invaluable experience for grieving children and a much needed respite for the surviving parent. Contact: (781) 861-1413 or info@wildflowercampfoundation.org  

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.

Brittany Kelly, NP
Nurse Practitioner, Pediatric Supportive and Palliative Care

Kristin Charest, RN, BSN
Nurse, Pediatric Supportive and Palliative Care