Supporting perinatal hospice & palliative care
Perinatal hospice and palliative care, a comprehensive model of care for parents continuing their pregnancies following a life-limiting prenatal diagnosis, is not expensive. But some costs for staff time and training are involved. If you would like to support this care financially, consider contacting an existing program — or a hospital or hospice that hasn't yet created a program — to ask if you can help with any needs, such as those listed here:
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Hospital foundation accounts earmarked specifically for perinatal hospice & palliative care (ask a hospital if they have an account that can receive donations or if they can establish one for this purpose, and/or offer to assist in fundraising)
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Grants to start programs
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In-house training by qualified professional organizations such as Gundersen Health System's RTS Bereavement Services (see "Conferences and training" on the Resources for caregivers page)
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Travel to professional training such as this seminar offered by the Columbia University Medical Center's Neonatal Comfort Care Program
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Online training such as that offered by the National Hospice and Palliative Care Organization, the International Children's Palliative Care Network, the End-of-Life Nursing Education Consortium, and the Royal College of Midwives (see Resources for caregivers for links)
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Certification in perinatal loss care from the Hospice and Palliative Nurses Association
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Staff time for developing processes and procedures such as templates for birth plans and advance care plans
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Supplies for memory-making and keepsakes, such as materials for preserving the baby's footprints
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Educational support materials for parents, such as brochures or books
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RTS Bereavement Services Perinatal Palliative Care Tool Kit for developing a program
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Photography equipment, training, or paid photographers for taking photos of the baby and family during their time in the hospital (services such as the trained volunteer photographers at Now I Lay Me Down to Sleep are not always available)
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Supplies for Child Life programs that support siblings before and after their baby brother or sister's birth
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Staff positions to maintain and grow a program (perinatal hospice & palliative care work is usually not full-time; it often is added to existing duties of a nurse, obstetrician, genetic counselor, hospice & palliative medicine physician, social worker or other health professional)
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Program visibility, such as brochures or websites
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Financial help for families for needs such as funeral expenses
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Research funding, to add to the growing body of medical literature about perinatal hospice & palliative care, parental outcomes, best practices, etc.
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In-house education such as hospital grand rounds presentations
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Travel and conference expenses for medical professionals with perinatal hospice & palliative care experience to spread their expertise
Raising awareness is also a way of supporting this care. Sometimes parents aren't given information about this option at the time of their baby's diagnosis and learn about it only because someone had previously shared information on social media. Much shareable information is on this website and also at facebook.com/perinatalhospice and on X under @perinatalhospic.
If you are interested in starting a program, some suggestions are here.
(Note: This website is maintained as a labor of love and does not accept donations or advertising.)
