Resources Hub
End-of-life resources
End-of-life care is not a single decision; it is a sequence of decisions, often made under pressure, frequently involving family disagreement, and almost always made without enough information. These are the organizations I’d point families to first, for advance care planning, hospice and palliative care, end-of-life doulas, and the grief that follows.
Advance care planning
National Hospice and Palliative Care Organization: CaringInfo
The largest US nonprofit representing hospice and palliative-care providers. CaringInfo is NHPCO’s consumer-facing site: state-specific advance-directive forms, free, with state-specific instructions. The NHPCO national directory helps families find a hospice provider by county. If your parent has been told they may benefit from hospice, the NHPCO directory is where to start. nhpco.org · caringinfo.org
Five Wishes (Aging with Dignity)
Nonprofit publisher of the Five Wishes advance-directive document. Five Wishes is the most widely-used non-legal advance directive in the US. It addresses medical, personal, emotional, and spiritual wishes in plain language that most families can actually complete together. Legally valid as an advance directive in most states. fivewishes.org
Compassion & Choices
National nonprofit advocacy organization focused on end-of-life options and autonomy. Provides free advance-directive support and consultation, a state-by-state guide to end-of-life laws, and advocacy for medical aid in dying. The advocacy position is worth noting for context: Compassion & Choices supports medical aid in dying legislation, which families may want to know before using the resource. The advance-directive tools and consultation are useful regardless of where a family stands on that question. compassionandchoices.org
Hospice and palliative care
Hospice Foundation of America
Independent nonprofit focused on hospice education, family support, and grief. A useful complement to NHPCO for families who want a consumer-facing, non-provider-affiliated source. The “Living with Grief” programming and family caregiver guides are among the strongest free resources available for the emotional side of end-of-life care. hospicefoundation.org
Center to Advance Palliative Care: GetPalliativeCare.org
National nonprofit promoting access to palliative care. GetPalliativeCare.org is the consumer site, explains how palliative care differs from hospice (and why that distinction matters), what to ask a doctor, and includes a provider locator. Most families discover too late that palliative care is available much earlier in a serious illness than hospice, and that they don’t have to choose between palliative care and curative treatment. getpalliativecare.org
End-of-life doulas
National End-of-Life Doula Alliance (NEDA)
National membership organization for end-of-life doulas. End-of-life doulas are trained companions who provide non-medical support to patients and families through the dying process: presence, legacy work, vigil support, and family preparation. NEDA maintains a directory of trained doulas across the US. A less-known option that many families find valuable, especially when the patient’s needs extend beyond what hospice staff can provide. nedalliance.org
Where to start in a hurry
If your parent has been told they may benefit from hospice: your first call is to NHPCO’s CaringInfo at caringinfo.org for state-specific advance-directive forms, and the NHPCO national directory to find a provider in your county. Hospice is paid for by Medicare for patients with a terminal prognosis of six months or less. The families I’ve seen who started it early got more from it than the families who started it in the final week. Earlier is almost always better, not a resignation.
If you’re in the planning phase, not an immediate crisis: start with Five Wishes for the advance-directive conversation, and GetPalliativeCare.org to understand the full range of options before a prognosis forces the question.
After a loved one passes: the Hospice Foundation of America’s grief resources are a useful starting point. Your parent’s hospice provider is also required by Medicare to offer bereavement support to the family for at least a year after the death.