End-of-life care is not a conversation most people want to have with their loved ones, but the best time to think about and discuss your healthcare wishes is during a time of calm—not in the midst of a crisis. While these conversations are often difficult, having them before an emergency means that decisions are made with clear heads, not with the emotions that a sudden illness or trauma can bring.
Advance directives are legal documents that spell out your wishes for end-of-life care, helping put into words the type of medical care you would want if you were suddenly injured or too ill to make decisions for yourself. The more people who know what your wishes are and whom you trust to make those decisions for you, the more likely it is that they will be carried out if the need should arise.
Yet despite their importance, only about 33% of Americans have completed advance directives, according to the National Institute on Aging. This gap between awareness and action often stems from discomfort discussing end-of-life care—but planning ahead can prevent confusion and conflict when critical decisions need to be made.
This article will help you understand advance directives, have important conversations with your family, and ensure your healthcare wishes are documented and accessible.
Jump Ahead
- What Are Advance Directives?
- Understanding the Health Care Proxy
- Having the Conversation
- Creating Your Crisis Communication Plan
- Additional Legal and Financial Planning
- Safeguarding Your Documents
- When to Review and Update
- FAQs
What Are Advance Directives?
Advance directives are legal documents that allow you to communicate your healthcare preferences and designate someone to make medical decisions on your behalf if you become unable to do so. These documents ensure that your wishes are known and followed, even when you cannot speak for yourself.
Generally, advance directives involve up to two documents: a Living Will and/or a Health Care Proxy. In New York State, unless the Living Will specifically names a proxy to act as your health care agent, a Living Will is extremely limiting. For this reason, we’ll focus primarily on the Health Care Proxy form, which effectively serves both purposes.
Who Should Have Advance Directives?
Every adult over the age of 18 should complete their advance directives. Once young adults are old enough to go away to college, they should have the privilege to choose their proxy and have a discussion about their beliefs and end-of-life wishes. These aren’t just documents for older adults—they’re important for everyone.
Understanding the Health Care Proxy
In New York State, the Health Care Proxy is the most comprehensive document for advance care planning. Unlike a living will alone, it both designates your healthcare agent AND documents your specific wishes, making it the single most important document for protecting your healthcare preferences.
The Health Care Proxy is a legally binding document that allows you to name your health care agent or agents and specify your preferences for medical care based on various circumstances. This person becomes your voice in healthcare decisions when you cannot speak for yourself.
What Decisions Can Be Addressed by a Health Care Proxy?
Through your Health Care Proxy, you can make decisions about:
- The use of dialysis and breathing machines
- Your wishes about being resuscitated if your breathing or heartbeat stops (Do Not Resuscitate orders)
- Hospitalization preferences (Do Not Hospitalize)
- Intubation (Do Not Intubate)
- Tube feeding
- Organ or tissue donation
Where to Find the Forms
You can download and print Health Care Proxy forms online. For New York residents, the form is available through the New York State Department of Health. Similar forms are available for other states through their respective health departments.
Having the Conversation
Starting the conversation about end-of-life wishes with family members is easier than you think. While more than 90% of people say having conversations about end-of-life care is important, only 27% have actually had these discussions with loved ones, according to The Conversation Project. The good news? These conversations become easier once you take the first step. By printing the Health Care Proxy forms from the internet, you have a tool in front of you to guide the discussion. This document helps you consider your own wishes and spell them out for others to follow.
Tips for Starting the Dialogue
- Choose the right time: Have these conversations during calm, quiet moments—not during a health crisis or family emergency.
- Use helpful resources: The Conversation Project offers excellent templates and conversation starters to help you begin the process.
- Be specific: Don’t just name your proxy—discuss your values, beliefs, and what quality of life means to you. Talk about specific scenarios and your preferences.
- Include multiple family members: While you’ll designate specific agents, sharing your wishes with other family members helps ensure everyone understands your decisions.
- Revisit the conversation: Your wishes may change over time based on your overall health and care needs. Keep the dialogue open and updated as your circumstances evolve.
Key Topics to Discuss
- What type of quality of life is important to you
- Life-sustaining treatments and your preferences
- Your feelings about organ donation
- Religious or spiritual considerations
- Your biggest fears and concerns about end-of-life care
- Who you trust most to carry out your wishes
Creating Your Crisis Communication Plan
It’s essential to prepare for life’s difficulties before you’re in the middle of a crisis. We all make better decisions when not operating in emergency mode. Research shows that patients with advance directives are more likely to receive care consistent with their wishes and experience better end-of-life outcomes. Family members also report less stress, anxiety, and depression when their loved one’s wishes are clearly documented beforehand. Having a crisis communication plan means putting important paperwork in order, assigning a Power of Attorney, and choosing an agent for your Health Care Proxy when you’re not feeling pressure or visiting a loved one in the hospital.
Why Plan Ahead?
Planning ahead provides several advantages:
- Reduces stress and confusion during medical emergencies
- Ensures your wishes are clearly documented and understood
- Prevents family conflicts about healthcare decisions
- Allows thoughtful consideration of your values and preferences
- Gives you control over your future healthcare
Essential Components of Your Plan
Beyond your Health Care Proxy, a comprehensive crisis communication plan should include documentation of:
- Emergency contacts and how to reach them
- Medical information (conditions, medications, allergies)
- Insurance information
- Location of important documents
- Your healthcare team (primary physician, specialists)
- Preferred hospitals or healthcare facilities
Additional Legal and Financial Planning
While advance directives focus on healthcare decisions, comprehensive planning should also address legal and financial matters. These documents work together to ensure all aspects of your care and affairs can be managed according to your wishes.
Last Will and Testament
A properly executed Will allows you to:
- Appoint guardians for your minor children
- Distribute your assets as you see fit instead of allowing the state to distribute them according to its laws
- Appoint an individual or entity to administer your estate instead of letting your loved ones navigate the process without guidance
Power of Attorney (POA)
A Power of Attorney allows a trusted family member or friend to carry out certain financial, legal, and business activities on your behalf. You can assign the agent specific powers and instructions, allowing them to carry out your wishes in your best interest.
A Power of Attorney must be completed when you have capacity but can be used if you become disabled or incapacitated, if you specify so. This document allows your loved ones to handle your matters directly in the event of incapacity without going through a lengthy and expensive guardianship proceeding.
Important Note: A Power of Attorney becomes invalid upon the individual’s death; at that time, financial and legal matters fall to the executor of the Last Will and Testament.
Preparing for Medicaid
If you anticipate potentially needing Medicaid assistance for long-term care, begin preparing early. Depending on the type of Medicaid (community versus chronic care), there are different “look-back” periods requiring either three months or five years of financial documentation.
Documentation to Collect
Consider purchasing an accordion file and start collecting copies of:
- Bank statements
- Proof of income (including Social Security award letters)
- Proof of insurance
- Asset documentation
- Deeds and property information
As time goes by, maintain the necessary look-back period by discarding the oldest documents as you add new ones. More detailed lists of required documentation can be found on your county’s website.
Professional Assistance: Elder care attorneys are excellent resources for information and assistance in planning for your future. They are specifically trained to work with Medicaid and understand the various rules and regulations that can affect your eligibility and planning strategies.
Safeguarding Your Documents
Completing advance directive forms is only the beginning—making them easily accessible is equally important. These documents do no good if no one knows where to find them when they’re needed most.
Distribution
- Health Care Proxies: At minimum, each designated proxy should have a copy of your completed Health Care Proxy paperwork.
- Primary Care Physician: Provide a copy to your doctor to include in your medical records.
- Easy-Access Locations: Keep copies in easy-to-locate spots in case they need to be accessed quickly:
- A central paperwork location in your home
- Your glove compartment for easy access in emergencies
- With a trusted family member or friend
- Digital Copies: Consider keeping secure digital copies that designated individuals can access if needed.
- Medical Alert: If you wear a medical alert bracelet or necklace, ensure it references your advance directives.
Tell People Where to Find Them
Having documents is only helpful if people know where they are. Make sure your health care agents, family members, and primary care physician all know exactly where to locate your advance directives in an emergency.
When to Review and Update
It’s vital that advance directives be revisited from time to time and updated as necessary. Your circumstances, relationships, and healthcare wishes may change over the years.
Times to Review Your Advance Directives Documents
- After a major health diagnosis
- Following significant life changes (marriage, divorce, death of a proxy)
- When your relationship with your designated agent changes
- After moving to a different state (forms may vary by state)
- Every few years as a routine check-in
- When your healthcare preferences or values shift
How to Update Your Advance Directives
You can always name a new proxy and update your wishes. Simply complete new forms and ensure all relevant parties receive updated copies. Destroy old versions to avoid confusion, and clearly communicate changes to everyone involved.
Frequently Asked Questions About Advance Directives
What’s the difference between a living will and a health care proxy?
A living will is a document that outlines your preferences for specific medical treatments in end-of-life situations. A health care proxy (also called a healthcare power of attorney) designates a person to make medical decisions on your behalf when you cannot. In New York State, the health care proxy is more comprehensive and effective because it both names your agent and allows you to specify your wishes, making it the preferred document for most people.
Can I change my health care proxy after I’ve chosen one?
Yes, absolutely. You can update your health care proxy at any time. Simply complete a new form with your updated choices and ensure all relevant parties receive copies of the new document. It’s important to destroy old versions to avoid confusion and clearly communicate any changes to your healthcare providers, family members, and the newly designated agent.
What happens if I don’t have advance directives?
Without advance directives, medical decisions will fall to your closest family members, typically in a specific order determined by state law (spouse, adult children, parents, siblings). This can create confusion, family conflict, or decisions that don’t align with your actual wishes. Additionally, your family may face difficult choices during already stressful times without clear guidance about your preferences.
Do advance directives expire?
In Advance directives do not expire. However, it’s wise to review and update them periodically—especially after major life changes like marriage, divorce, the death of your designated agent, a significant health diagnosis, or a move to another state. Some healthcare providers may request updated documents if yours are very old, though they remain legally valid.
Can my health care proxy override my wishes?
No. Your health care proxy is legally obligated to follow the wishes you’ve documented in your advance directive. They should only make decisions based on what they know you would want. However, this is why having clear, detailed conversations with your designated agent is so important—they need to understand your values and preferences to represent your wishes accurately in situations you may not have specifically addressed in writing.
Do I need a lawyer to create advance directives?
No, you do not need a lawyer to create basic advance directives like a health care proxy. The forms are available for free through your state’s Department of Health website and simply need to be completed, signed, and witnessed according to your state’s requirements. However, if you have complex family situations, significant assets, or questions about how advance directives interact with other estate planning documents, consulting with an elder care attorney can be helpful.
What’s the difference between a health care proxy and a power of attorney?
A health care proxy specifically addresses medical decisions, while a power of attorney (POA) handles financial, legal, and business matters. You need both documents for comprehensive planning. Importantly, a power of attorney becomes invalid upon death, at which point your Will’s executor takes over financial matters. Your health care proxy remains active as long as you’re alive but unable to make medical decisions.
Should I give my health care proxy to my doctor?
Yes, it’s important to provide a copy of your completed health care proxy to your primary care physician so it can be included in your medical records. You should also provide copies to any specialists you see regularly and to the hospital if you’re admitted. This ensures your wishes are immediately accessible when healthcare decisions need to be made.
Take Action Today
Don’t wait for a crisis to make these important decisions. By planning ahead and documenting your wishes now, you protect both yourself and your loved ones during what could otherwise be an overwhelming and uncertain time. When it comes to advance directives, the best time to plan is today.
Need Guidance? Creating advance directives and having these important conversations can feel overwhelming. Gurwin’s team provides support and resources to help Long Island families navigate advance care planning. Contact us to learn more about our family support services.
