v27 · IMPACT Grant Project 2025
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NORA — Navigating Our Roadmap for Advance Care Planning. At your own pace, on your terms.
Welcome to NORA, Navigating Our Roadmap for Advance Care Planning. NORA helps you to think through important healthcare decisions and make sure that your wishes are known.
Learn how advance care planning works
Can you make your own health decisions?
If you need someone to decide for you
Choose someone to speak for you
Document your treatment preferences
Share your wishes about donation
Plan for after-death wishes
Define what matters most to you
Where you see yourself on the care horizon
Turn your wishes into medical orders
Review everything in one place
1. A health condition that carries a high risk of mortality AND either negatively impacts your daily function or quality of life, OR excessively strains your caregivers.
2. Any condition that could severely affect your life expectancy, quality of life, or limit your activities of daily living.
3. A progressive condition that may get worse over time. For example: cancer, heart disease, COPD, chronic kidney disease, or progressive neurologic illness (Parkinson's, stroke, Alzheimer's disease).
4. Whether or not you have a serious illness, advance care planning is valuable for everyone.
5. Your path through this guide may differ based on your health situation, but every step is important.
Patients with serious illness should consider all of the decision-making steps in the Advance Care Planning (ACP) process. This includes the Health Care Proxy, Living Will, Organ Donation, End of Life Arrangements processes and portable medical orders such as MOLST/POLST.
Patients who do not have serious illness should consider planning ahead while healthy and completing a Health Care Proxy, Living Will, Organ Donation, and End of Life Arrangements.
A physician (MD or DO), physician associate (PA), or nurse practitioner (NP) can help to clarify your situation. A nurse, social worker, and/or Spiritual Leader can support you through this process.
Websites:
New York State Department of Health Advance Care Planning
health.ny.gov/community/advance_care_planning
New York State Attorney General Advance Directive
ag.ny.gov/publications/advance-directives
Generally, an adult patient is presumed to have the capacity to make medical decisions. You are presumed to have the ability to make your own health care decisions until your health care provider determines, to a reasonable degree of medical certainty, that you are incapable of making medical decisions. It is flexible, task-specific, and can fluctuate based on illness, medication, or time of day. New York has specific requirements for determining incapacity caused by mental illness or developmental disability. These requirements are beyond the scope of this app.
The four abilities for capacity include:
Can the person comprehend the basic facts, diagnosis, and proposed options or consequences?
Does the person recognize how these facts and choices apply to their own personal situation and life?
Can the person logically weigh the risks, benefits, and alternatives of the choices?
Can the person clearly communicate a consistent choice or decision?
Anyone can experience a medical crisis that can inhibit their ability to make medical decisions. Understanding these definitions reinforces the importance of Advance Care Planning. The goal is to make sure someone you trust can speak for you.
A physician (MD or DO), physician associate (PA), or nurse practitioner (NP) can help to clarify your situation. A nurse, social worker, and/or Spiritual Leader can support you through this process.
If you're unable to make your own decisions and don't have a Health Care Proxy, New York law (FHCDA) provides a way to identify a legal surrogate — someone who can speak for you.
Under New York's FHCDA law, your surrogate is identified in this specific order:
1. Your spouse or domestic partner
2. Your adult child (18 years or older)
3. Your parent
4. Your sibling (18 years or older)
5. A close friend (with documentation of the relationship)
6. If no surrogate is available — your doctor, with another doctor's agreement, may make decisions.
7. Surrogates may only make decisions based on your religious or moral beliefs, or in the absence of those, your best interests.
A physician (MD or DO), physician associate (PA), or nurse practitioner (NP) can help to clarify your situation. A nurse, social worker, and/or Spiritual Leader can support you through this process.
NYS Advance Directives: ag.ny.gov — Advance Directives
This process exists to protect you. The goal is for someone who knows you and your wishes to speak on your behalf when you are unable to do so.
Steps in the HCP process:
1. Health Care Process is completed
2. The patient becomes unable to understand the risks, benefits and alternative to medical treatment due to illness or injury
3. Formal medical determination by a qualified medical provider that the patient lacks the capacity to make health care decisions.
4. Official activation by the qualified medical provider who documents the determination in the patient's medical record which officially turns over decision making authority to the named HCP/agent
5. The HCP/agent assumes the role to make treatment decisions based on the patient's known wishes or best interests.
6. Deactivation (when applicable): the proxy automatically ceases to be active once the attending medical provider determines that the patient has the capacity to make their own medical decisions
A physician (MD or DO), physician associate (PA), or nurse practitioner (NP) can guide this process. A nurse, social worker, and/or Spiritual Leader can support you through this process.
NYS HCP Form: health.ny.gov/publications/1430.pdf
A living will is a written statement of your specific health care wishes in the event you become unable to decide for yourself. It is recognized as a legal document, and it requires two witnesses; it does not require a lawyer or notarization. It may include specific directions about withholding or withdrawing life-sustaining treatment should you have an incurable or irreversible mental or physical condition, with no reasonable expectation of recovery.
A living will often addresses: resuscitation, mechanical ventilation, antibiotic treatment, transfusion of blood products, hydration, artificial nutrition, dialysis, and/or invasive procedures. You can opt in or out of any of these; there are no right or wrong answers.
A living will should communicate your wishes, but it is not an actionable medical order. If you require hospitalization, you or your health care agent may be asked to detail your wishes so that they can be converted to an actionable medical order, such as a MOLST/POLST.
Before making decisions, it helps to understand what these treatments involve. Tap each to learn more.
CPR involves chest compressions and rescue breaths to try to restart the heart and breathing. It may include electric shocks (defibrillation) and medications.
A breathing machine (ventilator) pushes air into your lungs through a tube placed in your throat or through a mask. This can be short-term or long-term (including tracheostomy).
Nutrition and fluids delivered through a tube (feeding tube) or an IV when you cannot eat or drink on your own.
Dialysis filters your blood when your kidneys can no longer do so. It typically requires treatment several times a week at a dialysis center or at home.
Breathing help through a mask — not a tube in your throat. Used when you need some assistance breathing but not full ventilation.
You can say YES or NO to any of these — there are no right or wrong answers.
A physician (MD or DO), physician associate (PA), or nurse practitioner (NP) can help you to define your wishes. Nurses, social workers, and/or your Spiritual Leader can support you through this process.
NYS Living Will Template: ag.ny.gov — Living Will
Organ donation is a voluntary, legally binding gift that allows you to give an organ or part of an organ to be transplanted into someone who needs it because of organ failure or severe disease.
Why does this matter?
The demand for organs far exceeds the available supply. This leads to lengthy wait times, worsening health, and preventable deaths. Hundreds of people die or become too sick for a transplant before an organ becomes available.
Uniform Anatomical Gift Act:
New York's Uniform Anatomical Gift Act (UAGA) is part of Article 43 of the New York Public Health Law, and it governs organ, eye, and tissue donations as well as anatomical gifts for medical research and education.
Deceased Donation:
Deceased donation is when organs are donated after the donor dies. People of any age and medical history may be eligible to become donors. Few diseases automatically prevent you from becoming a donor.
Living Donation:
In a living donation, a person donates an organ or part of an organ to someone in need. The organ may be directed to someone the donor knows (directed donation), or it may be given to someone the donor does not know (a nondirected or altruistic donation).
The Donation Process:
In New York State, consent for donation is confirmed by enrollment in the NYS Donate Life Registry, by family, or by the person with decision-making authority for the potential donor. Anyone 16 years old or older can enroll in the Registry.
Whole body donation:
Joining the Organ Donation Registry does not authorize a whole-body donation to a medical school for the purposes of education. Whole-body donation programs are associated with teaching hospitals at colleges, and you must plan this with those institutions.
A physician (MD or DO), physician associate (PA), or nurse practitioner (NP), nurse, social worker, and/or Spiritual Leader can help you to define your wishes.
New York State Department of Health Organ Donation and Transplantation
health.ny.gov/professionals/patients/donation
New York State Donate Life Registry
donatelife.ny.gov
Associated Medical Schools of New York (AMSNY)
amsny.org/anatomical-donations
Shortly after death, someone must pronounce the death. A legally authorized entity, such as a funeral home, cremation organization, or anatomical donation program, then transports the body. In a suspicious death, the Coroner or Medical Examiner may assume custody of the body. Making these plans and preparations in advance relieves emotions and financial stress for your loved ones while ensuring your wishes are met.
This involves the disposition of human remains by burial or by cremation without a formal viewing, visitation, or ceremony, except for a graveside service.
If you have not, then your appointed agent should have a copy of your end-of-life plan, any funeral pre-arrangements, your will, and your military discharge papers (DD-214), if applicable.
An Arrangement conference is a meeting between you and the funeral director during which you choose the services and merchandise you would like. Services and merchandise can include, but are not limited to, floral arrangements, memorial service arrangements, an obituary, a casket, an urn, burial, and cremation. This may be with your next-of-kin or appointed agent if it occurs after your death.
Under New York State law, next of kin have primary rights over a person's bodily remains. Public Health Law 4201 allows you to appoint an agent to oversee your final wishes, regardless of other family relationships. This agent will have first priority over next-of-kin and should be someone you trust to follow your wishes.
This document from the cemetery establishes your right to bury the deceased in the plot. Store it in a safe place because it is difficult to replace.
A social worker and/or Spiritual Leader can help you to define your wishes. A licensed Funeral Director can help you finalize your arrangements.
New York State Attorney General Funeral Services — Know Your Rights
ag.ny.gov/publications/funeral-services
New York State Department of Health Consumer's Guide to Arranging a Funeral
health.ny.gov/publications/0704
New York State Department of Health Appointment of Agent to Control Disposal of Remains
health.ny.gov/forms/doh-5211.pdf
This is the most important conversation in your care plan. You'll talk with your care team — including your family and care partners — about what matters most to you.
What gives your life meaning in physical, social, emotional, and spiritual terms?
It's completely normal for your care goals to shift over time as your health changes. This is a shared decision between you, your family, and your care team. You can update anytime.
That's okay. You can come back to this step anytime. There's no rush — what matters is that you're thinking about it.
1. There are no wrong answers — only what matters most to YOU.
2. Your choice determines which care pathway you follow next.
3. Longevity Focus → life-extending treatments, Health Care Proxy, Living Will, EOL Arrangements.
4. Functional Focus → treatments to maintain independence, Actionable Medical Orders.
5. Comfort Focus → symptom management, Terminal Care, Organ Donation, Actionable Medical Orders.
6. End of Life → hospice-level care, Terminal Care, Actionable Medical Orders.
7. Your goals can and will change over time — you can update them anytime.
8. This is a shared decision between you, your family, and your care team.
Your physician (MD/DO), physician associate (PA), or nurse practitioner (NP) leads this conversation.
Your nurse, social worker, or chaplain can support you.
Deciding About Health Care — A Guide for Patients and Families: health.ny.gov/publications/1503.pdf
Tap your position on the line below. The description for that focus will appear.
When focused on longevity, you are focused on living for a long time and you want all available treatments to extend life.
When focused on function, you are focused on remaining independent and as functional as possible and you want treatments that will help you to do so.
When focused on comfort, treatment is focused on symptom management and treatments that maintain or improve quality of life.
End-of-life care refers to the support and medical care provided as death approaches. Generally speaking, people who are dying need care in four areas: physical comfort, mental and emotional needs, spiritual needs, and practical tasks.
Defining a care goal is a foundational step in medicine that ensures your treatments match your personal values, lifestyle priorities, and medical reality. This person-centered approach empowers you to steer your health journey while relieving the emotional burden on loved ones who may be asked to make care decisions for you.
1. Aggressive medical management and possible surgical intervention.
2. Full resuscitation: CPR, intubation, vasopressors if needed.
3. Artificial nutrition and hydration if you can't eat or drink.
4. Hemodialysis, blood product transfusions, and other interventions as needed.
5. Your care team will regularly check if the treatment burden is worth the benefit.
6. If your goals change, you can switch to Function, Comfort, or End of Life focus anytime.
1. Functional focus means quality of function matters more than maximum survival.
2. You define what "functional" means to you — there's no standard definition.
3. You may try treatments on a trial basis to see if they help.
4. Nutritional support will match your functional goals.
5. Therapy services help you maintain or regain abilities.
6. If your situation changes, you can switch to Longevity, Comfort, or End of Life anytime.
1. Comfort focus means prioritizing how you feel about extending your life — including where you want to be (home, inpatient hospice, hospital, skilled nursing facility).
2. This typically includes DNR/DNI orders (no resuscitation, no intubation).
3. You may choose to decline artificial nutrition or hydration.
4. Your spiritual, emotional, and cultural needs are central to your care.
5. Your family will be supported throughout this process.
6. You can change your mind and switch focus areas anytime.
End of Life:
1. This pathway focuses on hospice-level care — comfort and peace.
2. No life-prolonging treatments will be given unless you change your mind.
3. Support for your family (care partner/caregiver support) begins now, not just at the end.
4. Legacy planning is available — letters, recordings, ethical will.
5. Cultural and religious practices will be honored per your wishes.
6. Your care team is here for you and your family and loved ones every step of the way.
Terminal Care:
1. Terminal care is the final phase of the care journey.
2. The focus is entirely on comfort — not extending life.
3. Medications for comfort (pain relief, anxiety relief) are adjusted as needed.
4. Communication with your family is continuous and transparent.
5. Your hospice team coordinates all aspects of care.
6. Bereavement support for your family continues after your passing.
A physician (MD or DO), physician associate (PA), or nurse practitioner (NP) leads this conversation. Nurses, social workers, and/or your Spiritual Leader can support you through this process.
New York State Department of Health Center for Hospice and Palliative Care
health.ny.gov/facilities/hospice
Advance care plan: a checklist for the future
magazine.medlineplus.gov — advance care plan checklist
Medical/Physician Orders for Life Sustaining treatment (MOLST/POLST) turn your care goals into official medical orders that follow you everywhere — hospital, home, nursing facility, and with EMS.
A portable medical order (MOLST/POLST) is generally for patients with serious health conditions. A portable medical order would be appropriate if the patient wants to avoid or receive any or all life-sustaining treatment, if the patient resides in a long-term care facility, if the patient requires long-term care services, or if the patient might die within the next year.
The patient or other decision-maker should work with the physician, nurse practitioner, or physician assistant who will issue the orders.
Please view the Glossary for a full explanation of each of these terms.
When the patient has no pulse and/or is not breathing. Choose: Resuscitate (CPR) or Do Not Resuscitate (DNR).
Life-sustaining treatment when the patient has a pulse and is breathing. Choose: Intubate or Do Not Intubate (DNI).
What level of treatment do you want? Choose: Full Treatment, Limited Treatment, or Comfort Only.
Specific treatments to be provided or avoided based on your goals and condition.
Transfer preferences: Yes, Limited (comfort only), or No (remain in current setting).
Feeding tube or IV fluids: Yes, Trial Period, or No.
Antibiotic use: Full, Limited (comfort only), or None.
Dialysis if kidneys fail: Yes, Trial Period, or No.
Additional orders or specific instructions from you and your provider.
1. Your provider will review your Goals of Care decision with you.
2. Together, you'll complete a MOLST/POLST form — this turns your wishes into medical orders.
3. The form covers: resuscitation (CPR), medical interventions, antibiotics, and artificial nutrition.
4. Your provider makes sure these orders match your Living Will, HCP, and Goals of Care.
5. Both you (or your surrogate) and your provider sign the form.
6. Copies go to: your medical chart, you and your family, and EMS if needed.
7. This form is reviewed and updated whenever your health changes or you move to a new care setting.
Remember: Resuscitation and life-sustaining medical interventions can be highly invasive and can result in other medical complications. They do not cure underlying serious illness. Unlike what is portrayed in the media, only a small percentage of people survive after requiring CPR. Choosing to forgo resuscitation does not mean you are giving up on medical care.
First responders can legally follow these actionable medical orders in a crisis. Without actionable medical orders, they are required to resuscitate, stabilize, and transport patients to a higher level of care. A living will can provide the health care team with your health care wishes, but it is not an actionable medical order, and they are not legally bound to follow it.
A physician (MD or DO), physician associate (PA), or nurse practitioner (NP) leads this conversation and places the medical order. Nurses, social workers, and/or your Spiritual Leader can support you through this process.
New York State Department of Health Medical Orders for Life-Sustaining Treatment (MOLST)
health.ny.gov — MOLST
NYS MOLST form and guidelines
eMOLST electronic registry
Share this summary with your healthcare provider at your next visit. They can help you complete or update any documents based on your preferences.