Navigating illness or end of life can be overwhelming.
Below are some trusted resources all patients and their loved ones should have access to.Resources
Tools for documenting your wishes and making sure your voice is heard, even when you can't speak for yourself.
Healthcare Proxy / Medical Power of Attorney Designates the person who will make medical decisions on your behalf if you are unable to. Forms vary by state; hospitals will often ask you to complete a new one during admission.
Free NY State form: health.ny.gov/publications/1430.pdf
Living Will A written record of your medical wishes — what treatments you would or would not want — to guide your loved ones and care team before a crisis occurs.
Free option for individuals: freewill.com
Five Wishes An alternative to a standard living will that addresses the whole person: medical, emotional, and spiritual preferences in plain language. fivewishes.org
MOLST / POLST A medical order (not just a document) that travels with you across care settings and tells emergency responders and providers exactly what interventions you do or do not want. Completed with a healthcare provider. Learn more: health.ny.gov (search "MOLST")
Planning Ahead
Having the Conversation
The Conversation Project Practical guides and starter kits for talking with loved ones about end-of-life wishes, healthcare proxies, and what matters most. theconversationproject.org
StoryCorps A free app and national archive for recording and preserving personal histories and conversations with the people you love, in partnership with the Library of Congress. storycorps.org
Resources to help you start (and continue) the conversations that matter.
Resources to connect you with legal professionals and documents for your time in need.
Legal & Financial Support
Planning and Estates Law Project (PELP) Free legal support for end-of-life and estate planning for New York City residents, offered through the City Bar Justice Center. citybarjusticecenter.org/projects/planning-and-estates-law-project/
FreeWill A free online tool for creating a legally valid will, healthcare directive, or power of attorney. freewill.com
Finding Professional Support
Most people don't realize independent patient advocates exist until they're already deep in a crisis, whether that is a confusing diagnosis, a hospitalization moving too fast, a loved one in hospice, or the feeling that no one is explaining what's actually happening. An independent advocate has no institutional obligations, working solely for you, with the time and clinical focus that hospitals and insurance companies cannot provide.
If you are navigating a serious illness, whether it be your own or someone you love, having an advocate in your corner can mean the difference between feeling lost in the system and feeling genuinely supported through it.
What to look for: Advocacy is not yet a licensed profession in most states, so credentials and experience matter. Look for clinical background relevant to your situation, such as palliative care, oncology, elder care, and transparency about fees. An independent advocate should have no financial relationship with any hospital or insurer.
Greater National Advocates (GNA) A national directory of professional patient advocates. Search by location, specialty, and type of support needed. greaternationaladvocates.org
National Association of Healthcare Advocacy (NAHAC) The professional membership organization for patient advocates. Their Find an Advocate directory lists certified members nationwide. nahac.com
Recommend Reading
For Those Facing an IllnessThe Best Care Possible by Ira Brock
This book helps define what a “good death” looks like and analyzes the medical system failure to align better to meet patients where they are and with dignity and peace at end of life
Life After Diagnosis by Steven Pantilat
A guide to navigating care following a terminal illness, with questions and ideas to consider along the way
*Both of these are written by Palliative Care trained physicians who approach illness and human-centered care in an incredibly thoughtful way
For Those Grieving a Loss Grief is the Thing With Feathers by Max Porter
A short, almost poetic novel about navigating loss
Year of Magical Thinking by Joan Didion
A beautifully complex navigation to sudden loss
Blue Nights by Joan Didion
A second memoir further navigating aging and loss
Ram Dass“It is important to expect nothing, to take every experience, including the negative ones, as merely steps on the path, and to proceed.”