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.